Baby Dellinger

Who Knew??

2009-09-10T22:46:00.003-04:00

First off, to any of you who have emailed me wondering why I don't always update on this blog, it is because I post most of my quick updates on Facebook nightly (almost anyway?). There is a "Praying for Ned (PFN)" group that anyone can join to receive the updates. I mostly reserve my blogging for anything I consider to be of particular interest or that has brought me greater understanding.

As a quick update- Ned is doing pretty well now. We have had a difficult time clearing the last MRSA blood infection, but if his current blood culture remains negative through tomorrow, we will say that he cleared on Tuesday and he'll need to run 10 to 14 days on the antiboitic course from that date. The antibiotics are causing him some severe diaper rash, so we're really working on his southern hemisphere and praying about that!! Otherwise, he is up all day, playing, laughing and learning to make some sounds around his trach!! Every minute with him (and both of my children actually) now I can truely consider a blessing in each moment. I am so thankful to be able to spend time with them....can't wait to get in the bed and snuggle Jack in just a minute!

So I had a friend email me this week and made an off the cuff remark about how it never says anywhere in the Bible that "God won't give you more than you can handle"...WHAT??? I was comletely shocked!! How could something that never existed become such a commonplace saying and belief among Christians. And what does it say about us as a Christian body that we, for the most part, have no idea that the concept isn't Biblical? I have spent some serious time researching this and the only promise that comes close is in 1 Cor 10:13 ...and I quote, " For no temptation (no trial regarded as enticing to sin, no mattert how it comes or where it leads) has overtaken you and laid hold on you, you that is not common to man (that is, no temptation or trial has come to you that is beyond human resistance and that is not adjusted and adapted and belonging to human experience., and such as man can bear). But God is fiathful and He will not let you be tempted and tried and assayed beyond your ability and strength of resistance and power to endure, but with temptation He will also provide the way out, that you may be capable and strong and powerful to bear up under it patiently."

For me, trials and burdens are completely different. There is a connotation that comes along with the fall to temptation that carries a sense of responsiblity; however, when you just have burdens and trials in life, they are often completely out of your control both in prevention and restoration. I believe my friend was very correct when she said that God gives us more than we can handle all the time so that we will surrender and become fully reliant on Him so that He can be an active part of our lives working in us and through us. I certainly know that He has given me more than I can handle many times and I have made it clear to Him that I can't take anymore!!But, there is more than survial in these times, there is growth to be found there. I am just praying that in these times, I can keep my eyes focused on Him so I don't miss whatever it is that He is trying to show or teach me.

Perspective

2009-08-04T23:03:00.002-04:00

I find it odd how your perspective on any given situation changes from time to time, or moment to moment based on your current situation or past experiences. Living in a hospital is like entering some sort of alternate universe where time is completely relative. You never know if you have been here for two week or two months or if one of Ned's episodes has lasted 20 minutes or 4 hours. In fact, Everything in a hospital is relative. I'm never sure how to answer extremely easy questions like, "how are things going today," or "How are you feeling about his current condition". It just depends on the point of reference to which I am refering??

I always find that in a hospital, my perspective about myself changes. I honestly live my life with me at the center of my universe. Of course, when I say "me", I include MY children and all MY interests and MY responsibilities. But here, all of MY problems can't so easily be exaggerated in my mind. There have been times here, when I find it difficult to pray for my son. It isn't that I don't believe the Lord wants me to lift my son up to Him, but it's just that I think so much about how much Jesus taught us to love our neighbor as ourselves and how can I sit here and see the suffering of others and not be moved to share in their heartache as well? I know that our situation with Ned is extremely difficult, but there are so many other parents who are facing terrible circumstances with their own children and the hurt in this place is so intense. I look in the faces of other mothers here and I wish so much to be able to take their pain away because I know the unbearable the burden of their fears.

I have been so very frustrated with the lack of progress in Ned's condition lately; however, recognizing the trials of others here has helped me to be thankful for the healing he has received so far. I am just asking that as you lift Ned up in prayer (I know many of you do often and I praise God for your dedication), please pray healing over this entire unit. This is a place where miracles are seen as often as tragedy; but, somehow, it seems the fear of an unwanted outcome has set the tone around here. Thank you all for your continued support- as you have added Ty and Camilla to your prayer list, also add the baby in room 13 who had to be placed on ECMO today.

Much Love and Many Blessings,

Betsy

In Preparation

2009-07-22T21:20:00.002-04:00

I know I had promised to update more frequently as of last week; however, Ned's week really went downhill last week and the recover has been an effort. Last Thursday, Ned was diagnosed with pneumonia and MRSA sepsis. It initiated such a vascular balancing act that we got very close to a point where I felt we may have to let him go. It just so happened that a last ditch effort by his doctor at the moment returned him to the upswing- Thank the good Lord for Dr. Primis!!

One thing I really wanted to share was how I have know that God had prepared me for this situation with Ned. On the Saturday prior to Ned's accident on Sunday, I dropped in my parent's house to let their dog out while they were out-of-town. I picked a book off the shelf called "The Hiding Place." Nothing flashy or fancy about the book, in fact it looked ages old, but it caught my attention. I read much of the book prior to bed and then woke at 2am and finished it before Sunday school. That is extremely out of character for me. I never awaken during the night unable to sleep and I haven't read a book in a day since, maybe, college (actaully more likely to have been in the interest of meeting a due date). In my opinion, the book is profound.

The jist of the book is that there are these two sisters who assist Jews in the underground effort to escape Nazi rule. Their father has taught them all this Biblical truth all their lives and they use his wisdom as teaching tools in the concentration camps (true story). The lesson I most took away from the book was their ability to thank God and give glory to God regardless of the situation at hand. As soon as Travis handed me Ned that Sunday, although he was blue and not breathing, there was within me somewhere a small voice reminding me that if God was present in the Nazi concentration camps, then He was present here; if He could work miracles there, then he could work them here. The truths in that book have allowed me to remain focused on the positive and to give thanks to God for the small things we have or little blessings received. It also leads me to be thankful for the annoyances in life!!

I now know why I grabbed that book and why I stayed awake all night reading it. I needed to know that God's grace and mercy sometimes takes the form of fleas (you'll have to read it)!

Much Love....Good Night,

Betsy

The Journey Continues

2009-07-15T22:08:00.003-04:00

There is certainly a part of me that had hoped never to post on this blog ever again. I had basically used this format as an outlet to express, not only Ned's current medical condition, but also, how the Lord was working in my life and heart through those situations. I was definitely living in a place where I assumed all those times were behind me. There was a part of me that was missing feeling the closeness of the Lord in my life, but I wouldn't have opted to return to a critical care unit to rekindle the relationship?

On Sunday, July 5, Ned nearly drowned in the bath. Since then he has been at Levine's Children's Hospital in Charlotte and is in critical condition. I am at a complete loss for how I feel about our current situation and about my sick child. I am completely and utterly wrought with guilt. I have apologized to Ned a million times in that hospital room and to my Savior for being so irresponsible for such a precious gift in my life. I am coming to a greater understanding of guilt and its crippling affects on the spritual lives of people.

I have always thought that I understood why people who had made terrible "lifestyle choices" had a difficult time letting go of their guilt and accepting the forgivness of Jesus; however, my "understanding" was extremely abstract and distant, at best. Guilt oppresses you in a very internalized approach. I don't feel like I deserve to take my guilt to the cross and lay it down, and for that matter, I don't want to. I don't want to feel better while my son is struggling to live in a hospital bed. The most difficult concept for me to grasp at the moment is that I have never "deserved" to take my burdens to the cross....it was never a priviledge I had earned for any good merit or behavior. When you have to watch your children suffer for your misgivings, you desire to suffer as well. I know every parent in the world will tell me that it could have just as easily been their child, but it wasn't....it was mine. It's not that he went under that haunts me at night, it's knowing that when he couldn't help himself, he was desperately wanting and needing me to rescue him and I never came.

I am asking everyone to pray for Ned. I am praying for his peace and comfort....that is what I most desire for him. While every fiber of my being wants him back on my hip, clinging to my shoulder, I most want him to feel the peace of God. I have more that I would like to share about how God prepared me for this latest journey, but I don't have the endurance tonight to relay it...hopefully tomorrow. Much love and many blessings!

Betsy

What a Difference a Year Makes!!

2009-01-23T22:51:00.003-05:00

Who can believe that Ned turned a year old this week? I have spent much time reflecting on his life and our journey this week. While I often find myself frustrated with not being able to resolve Ned's GI issues, I am amazed at how far he has come. I have read back over this blog around the time of his birth and in some ways, I vividly remember that life and being that person and in other ways, it seems like I'm reading about someone else's life? Ned's life has not only deeped our faith he has strenghtened our character. We have endured a process that has taught us patience and we have learned that joy is completely independent of of your situation at any given moment....the absence of hardships doesn't guarantee joy, nor does the presence of hardships squelch it. Every day, I look at my family and my children and my heart is completely overwhelmed at the life God has granted to me.

I think often of how precious life is. In the past year, I have gained a better understanding of what it is to receive eternal life and the life more abundant. I used to believe those terms had different references, but now I understand that our eternal life starts NOW...it is the life more abundant. For some reason, I used to related eternal life to the life in heaven after you die, but I now believe that Jesus meant for us to have that life beginning now. It has been difficult for me to hang on to that life in the past year specifically since we brought Ned home from the hospital. Once his medical care was completely my responsiblity, I had a hard time not attempting to control every detail and micro-managing his care. It is a real effort for me to continually place his care and the feet of my Lord and allow him to completely restore Ned's body. Until I read back the past week, I had practically forgotten that "complete restoration" was my original prayer. I had come to a place of trusting God with the details and the timeframe, but continually praying for and believing in, complete restoration. I am working myself back to that place of surrender with God. Although Ned was a much sicker baby at that time, I lived in greater peace.

I don't have any birthday pictures as of yet. My parents are out of town this week and since the grand parents are the only people invited to the party (to prevent germ exposure), we're delaying the party till they return. Ned has no idea it is his birthday, nor does he eat cake, so we don't feel like there's any harm in delaying.

I'm not sure if I have mentioned it yet, but Ned is saying "mama" all the time now (Meanwhile, Jack, age 3, has started calling me Mom...like he's 15?)!!! We can't get him to say anything else, but he has gotten some teeth so maybe that will help with his speech. I though he would never get teeth, but a couple of weeks ago, he had four come in within a 3-day span of time. It wasn't Ned's most pleasant week, but he looks so much older all the sudden. He started to get the two outside upper teeth first and I was so afraid he was going to look like a vampire, but the center two popped right in there....thank goodness! His pediatrician told me not to worry about the teeth being out of order, apparently Ned "didn't get the manual". I assured Dr. Cerjan that Ned apparently missed manual distribution day, because he hasn't followed one protocol yet!

Other than the lingering GI issue, life is good and I'll post with some birthday party pictures once we have the little shin-dig! Much love and many blessings!

Travis, Betsy, Jack and Ned

So Sorry!!

2008-12-23T21:55:00.003-05:00

I can't say I know how time has gotten away from me so over the past several months other than to say we have been on a rollercoaster with Ned's feeds. It has consumed our lives to say the least. He still really isn't tolerating his feeds that well, but after a failed surgical procedure in Charlotte, we have taken him back to Chapel Hill where we feel like we'll eventually get to the bottom of it. He is currently down 2lbs. and just can't take very much volume at a time at all. He is refluxing and having bile in his tummy again. Everyone is certainly perplexed about what is going on with him, but I am hoping for some resolve in the near future. He is a completely different child when he is feeling well. I hate to see how he struggles and seems to be in pain during every feed. It is such a dread for me to have to start his feeds and he cries from the beginning like he knows it is going to be painful. Please pray that the Lord will grant Ned some rest and will heal whatever it is in his little GI tract that is so whacked out at the moment.

When he isn't eating, Ned is very affectionate now and laughs and smiles all the time. All his seriousness has somewhat disappeared. I'm going to post some recent pictures of him and Jack and I'll update after Christmas. I hope everyone has a very Merry Christmas and very blessed New Year! You have all played a very important role in our 2008 and I am thankful for your continued prayers and support.

Much love and many blessings,

Travis, Betsy, Jack & Ned

Surprise, Surprise!!

2008-10-31T13:42:00.002-04:00

I know everyone is astonished...I'm quite shocked myself!! Ned has had an eventful week, so I really had to share. We'll cover the good news first:

Ned has made major strides in his physical therapy this week. He is rolling onto his stomach (assisted), and tolerating it very well. He's even moving his little legs like he want to go somewhere. He is also holding his weight on his hands and knees. I suppose he'll be wanting to start crawling soon, I'm just not sure how we're going to manage that since he's connected to feed and oxygen all the time. That will be a little project for me. Ned has also been sitting up all by his self this week. He doesn't sit very long, but his endurance and strength is definitely improving. I've been so proud!

On the downside, we're back to gagging and yacking up spit again...not tolerating feeds. I'm starting to think it is another stomach ulcer? The doctor called in some medicine for it yesterday so I guess we'll just see how it works? Please pray about it. I'm so hoping he can continue to tolerate and stop the spitting up so we don't have to change is feeding tube to the one that keeps him on continuous feeds....that may really slow him down as far as mobility.

Travis and I have been asked to be a part of the radio-thon in November to help raise money for the UNC Children's Hospital. I am so excited to be able to share with people and raise awareness for CDH, as well as, praise the doctors and staff there who were so wonderful with healing Ned and in their treatment of him.

Please keep the three CDH babies currently in the hospital in your prayers (links to their websites are above): Nayeli in San Fransico, Carter at Duke and Lizzy Jo at UNC.

I hope to post some Halloween pictures of Jack and Ned, but it all depends on Ned's mood this afternoon.....it hasn't been all that pleasant this week.

Much Love and Many Blessings
Travis, Betsy, Jack and Ned

Just Can't Get Into the Swing of This

2008-10-27T23:15:00.004-04:00

I'm sure nobody will believe this, but I have the best of intentions of posting on this blog everyday, but, somehow, it just isn't making its way into the routine very well. I'm gonna keep trying though...so bear with me.

So, what we finally determined was ailing Ned several weeks ago was pleuricy and a stomach ulcer. By the time we caught both he was on the mend and has been doing much better. No more screaming his head off night and day...it has made life much more peaceful! Just in the past several days, he has started that y

acking again and I'm starting to think that was more related to the stomach ulcer and possibly, he has another one. His white blood count and platlet count has risen quite high again...I'm hoping to talk with his GI docotor tomorrow to see if this could all be related and hopefully find a cause for the recurring problem.

Ned is growing though...currently weighing in around 18lbs...he's quite the heafty one. He is starting to sit up better, rolls to both side and endures tummy time a bit better. He is mostly interested in standing though.....I told him it was okay if he skipping the crawling, but it was essential that he learned to sit on his own. He's not seeing my point of view at the moment so we're facing off over that one. He is also completely obsessed with his tongue and sticks it out when he grins (I would love to post a picture, but the camera light is way to distracting for him to ever maintain the smile during a photo).

Other than that, things have been pretty "routine" around here, although that isn't a word I would use to describe our household at all anymore. Tonight, Jack stuck the head of a miniature spiderman up his nose...it got stuck. It put him in a little panic in the bath when he had to tell me it was up there...we eventually blew it out...really gross stuff! As you can see, we're currently in the "super hero" phase.....

Please pray for baby Nayeli and Carter. They were both born recently and are working their way through recovery. Also there was a mom being induced at Chapel Hill today (no website)...her little name is Lizzy Jo, how cute! I'll update everyone on her condition as soon as I hear something. These families are facing a very tough battle, they need your constant prayers because they need the presence and foundation of their savior.

Anyone want to take bets on how long it will take me to post again? I'm gonna aim for Friday?!

What a Rollercoaster....

2008-09-10T21:29:00.002-04:00

I knew when we were in the intensive care units that they expected Ned's healing process to be like a rollercoaster....lots of ups and downs. Somehow, I feel like the ride has gotten much more bumy since we have gotten home. Not that his condition is in any respect as critical as it once was, but Ned is having a hard time maintaining a "well" status.

For the past month he has been battling several respiratory respiratory viruses which have finally developed into a pneumonia. I think he is past the worst of it...he just continues to struggle with a nasty cough, low-grade fever and lots of extra secretions which he isn't that capable of handling well. I'll be so glad when he isn't yacking and gagging up stuff out of his lungs. He's quite a pitiful site during those little episodes.

Other than that, we met with another feeding therapists while in the hospital last week. After working with him and looking at the results of his latest swallow study, she thinks he is very teachable as far as eating goes. That was very encouraging news to us, so I'll start working with him closely until the feeding therapist in our area returns from maternity leave. I would like to hurry things along, but I think it is important that we work with a therapist who is similar to those he has worked well with in the past.

It's just such a new kind of life with everything up in the air all the time, but I am continually reminded about how blessed we have been to be able to keep Ned here with us. It is so difficult to know all these other children who are coming into the world who aren't meant to stay here. It always puts my problems and Ned's medical issues back in perspective. Please continue to pray for these precious children and their families.

Hopefully, I'll get some simblance of a routine again soon so I can begin updating regularly again. I'll also try to take some updated pictures of the kids.

Much love and blessings to you all!
Travis, Betsy, Jack and Ned

Minor Set Back

2008-08-05T09:49:00.002-04:00

Well, we returned home Friday afternoon from another week-long hospital stay. Apparently my affection isn't enough for Ned....he seems to want to continue to return to that hospital environment he learned to love so well where all the nurses are constantly fawning over him. I'm not quite as entertained by these little "field trips", but at the moment it looks like we've crossed another little hurdle....yoohoo!

Ned's diagnosis from his hospital stay is still a bit of a mystery. We originally took him into the ER because his respiratory rate and heart rate were pretty elevated and his breathing looked labored. By the time we got into the hospital, his O2 sats were dwindling, so I'm thankful we took him when we did. God's direciton overruled my natual tendancy to believe things will pretty much work themselves out and to avoid hospitals at all costs......good thing! That was about the extent of his symptoms? He did have a slight (99) fever at the hospital that night, but never again. His white count was way up there at 30,000 where it has pretty much remained even after a full course of IV antibiotics so they've pretty much ruled out infection. At one point last week, they was some talk of leukemia, but they ran some extra labs on Thursday that ruled that out. When it was first mentioned, I started thinking "surely he won't have leukemia....I just don't think I can take that kind of stress right now." But God reminded me that His power and provision is endless and He has provided so well for us so far, why wouldn't I trust Him now? Still....very thankful the tests came back negative.

So, other than still requiring a tiny bit of oxygen and his white count staying up there, Ned seems great. The best news is that yesterday at the doctor, Ned finally made it onto the bottom of the growth curve!!!! We have been trying to get back on the normal curve since April!! He weighs a whopping 14lbs. 10oz. He looks so much better with each pound he packs on. We're still not eating by mouth and our constant return trips to the hospital are really putting a kink in the feeding therapy sessions. If all goes well, we should begin next week!

Ned has started to laugh and smile much more and is quite the tickleish little fellow. He and Jack are so precious together, I can't hardly stand it. Things are moving right along and we're working on some developmental skills like sitting up and grabbing toes....major goals and objectives. I so appreciate everyone keeping up with Ned and continuing to pray for his progress.

Please continue to pray for April and Russell VanDyke. They are still coping and working their way through the loss of their son, Seth. If you want to take a look at the little cutie....here's the link: http://www.youtube.com/watch?v=TbraxnhvEeI

Love and Blessings to you all,

Betsy, Travis, Jack & Ned

A Tribute to Seth

2008-07-16T19:51:00.002-04:00

This morning around 1:15am, Seth Vandyke was called home to the arms of our Lord. It is with such deep sadness and regret that I relay this to you all. My heart is broken for a precious family who has watched their son fight the hard fight with CDH. I know, without question, that God chose his parents, Russell and April, for this very special child because He knew that Seth would need extraordinary parents to see him through his short, yet highly purposeful existance. I thought today how much I will enjoy seeing Seth when I get to heaven. I have no doubt that he will have more to share about how Jesus worked in him and through him in his three week lifespan.....he'll be able to hang right in there with the story telling of all the old saints. I know God has been holding Seth and guiding him every step of the way until he led him home to a place of peace, comfort and joy.

Please keep April, Russell and Seth's brother Nash in your prayers. They are walking through a very deep valley where most of us only every tread in our worst nightmares. But they will also experience a peace that most of us will never have the priviledge of feeling. I know God is smiling down on this family with such pride for their never-ending faith and enduring dependence on the their Father. I am praying that even during this time, they will feel the hand of God in their lives and know, beyond a shadow of a doubt, that this was His very best plan...maybe without fully understanding, but with complete trust.

Tonight, I will put my little CDH babe in the bath. I will wash his little body and inspect his little scars. I will again be so poiniently reminded that his life is more than a blessing....it was a miracle handed to ME? Everytime I think of April, I will be reminded of what a gift I have received and what a responsibility I have in being a good steward of the children God has placed in my care. I hope that the light and life I see in Ned will always be a constant reminder to me that God entrusted me with a life full of purpose and that will inspire me to raise him in a way where he can fulfill his potential.

Please continue to pray for Russell, April, and Seth. They need to feeling the healing power of prayer and scripture at this time.

Thank you....love you all so much!

Betsy, Travis, Jack and Ned

Jigity Jog.....

2008-07-02T21:14:00.008-04:00

Home Again, Home Again.....We are so very thankful! I will have to say that this hospital stay was the most taxing on me personally. I know that sounds completely insane since Ned was completely stable and the surgery wasn't the life or death type, but he had to endure so much pain and discomfort this time and watching it for 6 entire days straight just about sent me to the psych ward! We have just been really spoiled being in the intensive care units where modifications to care are made immediately when there are any signs of intolerance. Following the issues with the narcotics, we went through a whole other ordeal attempting to get him on a feeding schedule that his little tummy could adjust to. On the weekends with few people around, such change takes an act of congress. He cried more in the past week than he has ever cried in his entire life combined. I may be the only mother in the world who would prefer that her son be in an intensive care if he is going to be hospitalized at all?

Enough of that....we're home and he is doing great. As of today, Ned is back up on full feeds, but is still being fed continuously. Our goal is to increase the calorie concentration of his feeds (he has lost about a pound and a half over the past week and needs some serious fattening up) and then transition him to bolus feeds (which is how normal people eat....large volumes over short time periods about every three hours). It may take us a while because we don't want to push him at all and risk compromising the nissen again? As you can see from the picture above, Ned is elated to be back home. In fact, he cried until we exited the hospital and then he settled down quite a bit....like he knew! The only issue we are having with him at the moment is that he has developed a severe "mommy complex" and I can hardly leave the room without him crying. I'm hoping when we go on vacation, he'll be around Travis all day for a while and loose a little of his obsession for me.....not all of it...just a little bit.

I just wanted to update everyone and let you know how great everything went. I know I have said this a gazillion times, but I have the most compassionate surgeon in the world. In fact, he came by the hospital on Saturday just to check on Ned.....he is a precious man! I just thank God that He placed him in our path and used him in saving Ned's life.

Please continue to pray diligently for Baby Seth. I believe God will respond as His people pray. Seth is on a difficult road, but there is no path or place from which God cannot redeam and restore us....just ask anyone who has been spared by the transforming grace of Christ!

Much love to you all!
Betsy, Travis, Jack & ned

Sweet Relief

2008-06-27T12:14:00.004-04:00

Rest finally came to little Ned last night around 10pm. It was an extremely long up hill battle yesterday trying to get his pain under control. The problem stemmed from the fact that his narcotic tolerance is extremely high due to living in a drug enduced state for months on end and that they can't start IV drips on the floor on children as young as Ned....that needs to be done in an intensive care unit. The NICU isn't supposed to bring children back into their unit after discharge....it's part of the way they control germs and infection and the PICU is always really slammed full with extremely sick children. Ned really isn't nearly sick enough to be in the PICU, but his pain was starting to cause him some real respiratory problems which I feared may send him back to the PICU for good cause?

Yesterday afternoon, he started to have some real signs of respiratory distress. He was needing more and more oxygen support and his O2 stats were slowly, but steadily decreasing. I called in my nurse and asked her to page surgery. Our surgeon was in the OR and the responding surgeon began trying different doages of the morphine and fentynal.....nothing. He continually kicked and screamed to the top of his lungs. This had gone on since 4:00 on Wednesday afternoon and he was so exhausted and in so much pain that he was too tired to breath and he was guarding his abdomen and only taking really shallow, really labored breaths. He looked terrible. Dr. Adamson got out of surgery and came by....agreed that Ned seemed to be in a bad way and suggested that we try him on one more medication (a muscle relaxer, not a narcotic) to see if that had any effect. If not, he said we would do whatever we needed to do to get him on some higher doses of pain meds. Once we started the muscle relaxer, Ned we completely to sleep for about 10 minutes, immediately woke up screaming. I paged the on-call surgery resident twice, when he didn't come immediately, my nurse paged Dr. Adamson at home. He called down to the PICU and the attending fellow said she would handle Ned's pain management without moving him to the unit.....yeah!!!!

When Bridget walked in our room last night, I have never been so thankful to see a human-being in my life! I felt like, "Thank you Lord"...here was somebody who knew my son and understood his addiction and tolerance levels. I told Bridget that I was so thankful that somebody who believed in drugs was finally here! It took an unbelievable amount of drugs to get him to sleep. After she gave him his first round of ativan and fentynal, she came back to see how he was doing...Ned just looked at her like "what else do you have?". They finally put him back on a Fentynal drip and he went to sleep around 10pm. He has been out like a light ever since. I know the child has to be completely wiped out. He is back down to .2 on his oxygen where he had gotten back up to 1.5 liters. I feel sure he'll come back off completely once he comes out of this little comatose state he is currently in.

Thank you all for all your prayers, they were much needed and felt over the past two days. I think we're over the hump and should start working on the feedings soon and try to make our way back home in the next couple days!

I just got back from visiting Russel and April, Baby Seth's parents. Seth is still stable on ECMO. The surgery team is re-positioning his ECMO cannulas this morning as they had shifted just a bit. Please pray, pray, pray for him and his family. Please ask God to work a miraculous healing in his little body like only He can do.

Much love to you all!
Betsy, Travis, Jack & Ned

Lucky Number 7?!

2008-06-26T14:45:00.002-04:00

Well, we have gotten past what I truely expect to be our final surgery. We still don't have a good idea about what caused the first nissen to fail, but this one went off without a hitch. Dr. Adamson secured the stitches with (I think he said polyester) material to help scar tissue grow and more strongly secure the wrap? For some reason polyester doesn't seem like a surgical material to me...maybe I am remembering it incorrectly? They tested the nissen to ensure that a feeding tube would pass through the now narrowed opening. It went through easily where there was some obstruction last time. Maybe that had to do with the problem, only time will tell. Please pray that this procedure will hold up so Ned can begin to learn to eat like normal....that would be amazing!

In the meantime, Ned needs prayers for relief from pain. He has built up such a narcotic tolerance, that they can't seems to get him comfortable following the surgery. Now that he's out of the ICU's, they can't put him on any kind of a narctoic IV drip and the one time doses of drugs just aren't touching his pain. He has been extremely worked up all night and really hasn't rested much at all since his surgery. Please pray that his pain will subside so that the amount of medicine he is allowed to receive will sufficiently allow him some rest.

Please check out Baby Seth's link and continually pray for him and his family. He was born yesterday (delivery was scheduled for tomorrow) and he is having a difficult go of it so far. The surgeons put him on ECMO yesterday afternoon just hours after his birth. His parents are holding up beautifully so far....what a testiment to the sustaining grace of our Christ! Seth showed some signs of improvement this morning....baby steps, but progress all the same! Just please pray that his body will get the rest it needs for his lungs to begin to function better!

I'll post more when Ned is resting better. Right now, I'm cramming between scream sessions....love to you all!

Betsy, Travis, Jack & Ned

Many Needed Prayers

2008-06-14T23:16:00.002-04:00

Just to clarify the heading, Ned is doing fine. He is still refluxing pretty severely; however, we have been able to manage it somewhat with the use of probiotics and continuous feeds. We're simply waiting for the 25th to repair the nissen procedure. I am really hoping that once that is complete, he will begin to make some progress on feeding by mouth. I have tried him several times on spoon feeds, but it seems to get to a certain place in his throat and up it comes. I am very encouraged that he is willing to try. I so hope he'll begin to eat a little soon! Even if we're still supplementing him through the g-tube at night, I sure would like to get back to work at some point. I really miss working....just getting showered and out of the house, living in somewhat of a routine and interacting with other adults during the day. I know this is just a season so I'm trying to focus on finding my way where I am and learning to praise God for the place in which He has me. One day, when Ned is going off to college or getting married, I'll look back on this time I have with him and be grateful. Although it isn't what I would choose right now, I certainly don't want to squander it as if it isn't a valuable experience.

On to the prayer request....other than surgery and eating prayers for Ned, there are several other families who are really walking through the fire right now. I'm not sure how many of you have kept up with Baby Skyla's blog. Skyla had the same two major defects as Ned and has struggled with complications from the repairs since her birth last October. I am deeply saddened today as Skyla has lost her fight. My heart is so burdened for her mother. I truely believe that God allowed Skyla to return to Him as she had served her purpose on this earth and He wanted to shelter her from any further suffering. Having said that, I don't know that it will give her mother any peace or comfort at this moment. She has been completely devoted to Skyla and has been her strongest supporter, ally and cheer section. Please pray for her family and specifically her mother, Kristy. I would love to say that I can't imagine what they are going through, but the truth is that I have imagined it in my head many more times than I care to recall. I can't begin to know the surreal reality that is consuming them, but I believe that they must be feeling completely crushed by the realization of all their fears and now facing a sense of loss like none other.

Also, please keep in mind that one day this week may be the day that Baby Seth makes his debut. Please pray that the Lord will lay his protecting hand upon little Seth at this very moment, that He will ordain Seth's birth and use the miraculous healing of Seth's body to speak into the hearts of others. Please keep his parents, April & Russell, in your prayers throughout the week. The unknown, when it relates to your children, is a very dark place to be. I am praying that they will feel the Lord guiding them and holding them granting peace throughout Seth's healing. They are both such beautiful people, I look forward to seeing what a precious child the Lord gives to two such people.

That's all for tonight. I believe in this prayer group and God's faithfulness to respond to your requests. I attribute Ned's life to each and every little prayer that was lifted up in his name. There is much power here and I'm hoping it can now be used to bless others.

Much love to you all!
Betsy, Travis, Jack & Ned

Way Past Due

2008-06-02T22:26:00.002-04:00

I realize that it has been forever and a day since I have updated the blog. The only reason I haven't kept it up very well is that we haven't installed high-speed internet access at our house yet and my verizon card is slower than dial-up. I think we'll be online in the next couple days; however, I have received several emails questioning Ned's progress. This may be short since my patience can't withstand this slow pace, but once we have our computer set up, I'll keep this blog up much more regularly again.

First, for the good news! Ned is growing by leaps and bounds. He weighed 8lbs. 12oz. when we left the hospital on 04/15 and today he weighed in at 11lbs. 8oz. He is getting quite chunky and it's completely cute. We have been meeting with an army of specialists since we got home and so far, they are all amazed at his progress considering his medical history. Everyone that enters our home or meets with us calls him a complete miracle and I agree knowing they have no idea how true their statements are. His developmental progress hasn't been terribly dealyed, amazingly, and we hope to have him back on track in about a month. I'm sure he isn't loving me because I'm like a drill sergeant!

Ned still isn't taking anything by mouth, and at the moment it appears that it will be at least a month before we can even begin to make any progress. His nissen procedure has failed....confirmed today with an upper GI test back in Chapel Hill. They are planning to repair it on the 25th of this month; however, he probably won't work on feeding by mouth very much until that is fixed. With all that in mind and knowing that teeth are soon to make their grand debut, I have decided to hang up on the nursing. It was a difficult decision for me, but my time is getting extremely strained with keeping up his feeding and supplies, along with pumping supplies, house cleaning, Jack and work. Something has to give and that seems like the most logical responsibility to relinquish especially considering that I have a stock pile which will get hime through a couple more months anyway.

This surgery at the end of the month will be Ned's seventh surgical procedure. While this sounds overwhelming at first, I am looking at it as God's perfect completion. In the Bible, the number seven signifies His completetion and, often times, rest (as in the Sabbath). In many circumstances, the seventh means "finished" and many verses surrounding the sevenths say "It is done". His promises and the truth in His living word have carried us though this and will see us through.

I apologize for the delay and I'll keep up better in the future....and I'll post pictures when the connection is faster. Thank you all for the continued love and prayers that have been poured out on our family.

In His love,
Betsy, Travis, Jack & Ned

2008-05-18T23:14:00.003-04:00

We have been home for several days and are finally starting to get settled in! Thursday and Friday were pretty hectic just trying to get Ned in a routine and get our hands around all his care. He has settled in wonderfully, we really couldn't have asked for a better transition. Our biggest hurdle has been trying to get everything moved in and cleaned up in our house. We've also run into a coule of glitches with things not functioning properly while trying to get cable and phones and such as that installed over the weeknd. As of tonight, I feel safe saying "I think we have made it over the hump"!

Our most difficult part of bringing Ned home was the actual ride from Chapel Hill. We think he may have been a little car sick. I'm hoping he'll do better on the trip to his pediatrician tomorrow? Otherwise, he spent a couple of days looking around a bit bewildered but has now settled down and is acting like his old self. With one exception....he is trying to nurse a little bit. He still isn't taking any volume to speak of, but he is attempting to suck and swollow without gagging. For him, it is a huge improvement!

We've been so busy that I have hardly had time to reflect on how God brought us to this end. All I can think of in my head is that we have finally arrived to the only place I have wanted to be since last August...at my own home with Travis and my two boys. Above is a picture of Ned at home.....he looks like he's posing for the SI swimsuit additon with his hand cocked behind his head!

I just found my computer tonight so I'm going to sign off for now. I'll give better updates tomorrow!

Last Night in Chapel Hill

2008-05-14T22:53:00.002-04:00

I joined Betsy in Chapel Hill tonight to find our little man sleeping soundly after his mom gave him a bath. In order to ride home with Betsy and Ned tomorrow, I needed to catch a ride up here and as you know, it's not a short trip. My good friend at work, Mark, graciously volunteered his time after a hard day's work to drive me up here then back to Gaston County. It's people like that and many others that God has placed in our path that has made this journey bearable. Tonight at dinner, we thanked God for the journey He has put us on, and of course for the miraculous healings He has dealt little Ned.

It is bitter sweet tonight, as the day we have been waiting on since August of 2007 is finally here. Tomorrow, we will bring Ned home healthy and intact. We know the road ahead is not going to be the easiest, but our Savior has shown His healing might, and we will continue to trust in Him during the years to come, with both our children and Margaretta. While we are so excited to get home, it is still hard leaving the many nurses and doctors that have been Betsy's friends and family while I was home working. These people mean so much to us, and we are taking every opportunity we can to tell them this. While I'm bloggiing, B is writing notes to many of these special people. I'm sure tomorrow will be a tear filled farewell also. It seems it won't be for long though, b/c we already have a follow up appointment scheduled for June, so that reunion will be special I'm sure.

Well, we've got a big day tomorrow, and with Ned passing all his "go-home" tests, and Betsy passing all her "go-home" tests as well, with flying colors I might add, it looks like we'll be ready to roll tomorrow some time. We owe our good friend Kelly and Moose a debt of gratitude as well, as they have allowed B to live in their apartment since they've gone home to Cville, and for this we are very grateful.

Thank you all again for the visits, cards, Sun-drops, and especially the prayers along the way. Please continue to lift my family up, and please let us know if there is anything we can do for any of you.

Love and God Bless,

Travis, Betsy, Jack & Ned

The Date Has Been Set!

2008-05-13T20:49:00.002-04:00

We're going home on Thursday!! I can't believe it..... just seems like a dream! I'm a little afraid to completely get my hopes up, but it looks like a go. I had to say goodbye to some of my nurses today and I had a difficult time letting them go and knowing that they had to let my son go. They have invested a lot of time and energy into Ned's survival and progress. They have become my friends and the only family Ned has really known. As much as I am ready to get back home and to our normal life, the people I have met here will be dearly missed.

Most of our days are now being spent getting prepared for home. I have trained on the feeding pump that we'll be taking home. Ned began bolus feedings today and seems to be tolerating it rather well. The feeding change is a big adjustment for his belly, but he looks like he's going to make his peace with it. Ned passed his carseat test with flying colors. What that basically means is that he sat in his carseat for 3 hours without any problems....he actually slept through the whole thing. I can only hope he does the same for the road trip on Thursday!

The doctors have been so good to get everything set up for us at home. They have tracked down a pediatrician, and all my specialists in Charlotte. I will return to Chapel Hill for follow-ups with our surgery team, but everything else will be handled out of CMC. Ned's general surgeon told me yesterday that he and the heart surgeon were high-fiving in the hallways about how well Ned has done and how he's going home. That melts my heart that they are so excited about Ned...such truly beautiful people.

As an aside, baby Charlie has made it through his CDH repair this afternoon. His hernia didn't end up being that severe and they were able to close the whole without the use of a patch. They are planning on peforming his first of several surgeries to repair his heart defect on Friday. Please keep Charlie and his family in your prayers. They are still struggling to get their minds around everything and they have a long road to hoe.

I want to thank you all again for all your prayers and encouragement over the past 4 months and even prior to that. I know everyone will want to see Ned and I so wish we could have a big coming home party, but until we meet with some of his specialists, we're not sure how they are going to want us to handle germ control. I'll keep everyone posted on what they think his immune system and lungs can handle and as soon as we can have company, I'll let everyone know. Until then, I'll keep the blog updated so everyone can continue to track Ned's progress. I know you all have a lot of time and emotions invested in our little man as well. Love you all and can't wait to see you soon!

Much love and many blessings,
Betsy, Travis, Jack & Ned

2008-05-11T22:47:00.002-04:00

The past couple days have been a bit slow and a little surreal and nostalgic for me. Ned continues to do well. We are working on getting him back up to full feeds which we should reach that goal by tomorrow afternoon. The home health equipment company will be delivering the feeding pump we will take home on Tuesday and we'll be trained on how to use that specific piece of equipment. I'm not sure if we'll leave here on Tuesday or Wednesday, but they are projecting one day or the other! They also hope to get Ned on bolus feeds pretty quickly which means that we'll pump him full of food over like 30 minutes then he'll have 2.5 hours where he is completely wireless!! At the moment, the only cord which remains is the feeding tube so he feels so free to me, it's amazing! When I went to pick up my friends new little girl the other day I felt so awkward because I wasn't sure what to do with my free hand that didn't need to be managing cords while lifting....I felt so incapable of holding a normal baby....I think I'll get used to it though.

I'm sure some of you remember that I mentioned meeting a girl named Kelly who was pregnant with a little boy, Charlie, who had been diagnosed prenatally with CDH and a heart condition. Charlie was born last Friday and has done pretty well over the weekend. They hope to perform his CDH repair on Tuesday if things continue to go well. Please keep him and his family in your prayers. Kelly is having a really difficult time at the moment and hasn't slept in 4 days.

Happy mothers' day to everyone...I'm going to celebrate mothers' day later this week when we're all together....FINALLY. Who can believe that this time next week I'll be home with both my boys? I love you all!

Betsy, Travis, Jack & Ned

PS- If anyone is looking for a night of good clean fun....please purchase and play "Cranium"....I have laughted my head off playing tonight!

The Pain After A Successful Surgery

2008-05-07T23:08:00.002-04:00

Betsy and I arrived to the hospitol around 9am this morning to hang out with Ned a little while before they were to take him down to the OR. Dr. Adamson came in about 930 and said they were several hours behind schedule and that it would be around noon. Our nurse finally carted him down to the OR around 11:30. We went down to the cafeteria to get some lunch around 1:00pm, where we saw our surgeon eating lunch. Betsy asked him "What are you doing here", and he advised us they were just getting the anesthesia going and that they couldn't start without him. We later learned that he told our nurse that we "busted" him eating lunch. I don't know what we would do if God hadn't blessed us with such a wonderful surgeon. It has been such a relief to have such a wity, kind-hearted, and talented doctor in charge of all of Ned's surgerys. Anyway, the surgery was a success, and Dr. Adamson was pleased that he was able to get enough stomach twisted and turned to insert the G-tube along with performing the nissan procedure. This was our best case scenario going in, and there was a back up plan, but thankfully we didn't have to go to that.

We joined Ned back in his room around 500p and started a 5-hour process of trying to get him relaxed. In all Ned's past surgeries, he has come back to the NICU with breathing support of some kind, and they were able to have him on some pretty heavy doses of narcotics to alleviate most of the pain. Today, however, he came back to the NICU with no breathing support because he's been off of it for some time now, so they can't give him as much pain medication after this procedure. Kids that young tend to "forget" to breathe sometimes when they are that sedated. Ned was in what looked to be excruciating pain, and that is a very hard thing to watch. We were so helpless. The best we could do was just hold him, and pray to our God to alleviate that pain, which we have done, for hours. Finally, about 10pm, we thought he was settled down enough for us to run downstairs and grab a bite to eat. We sat there and talked about plans to stay the night rocking him, but as we returned to the NICU, our nurse informed us that he was sleeping, and seemed pretty calm at the moment. She assured us that she would call to wake us if she needed the reinforcements to come back tonight to try and soothe him the best we possibly can. Prayerfully, our good Lord will continue to comfort our child during the night.

The upcoming days seem to be ones of education as we will learn how to take care of Ned's G-tube and start to feed him with it. This is a very exciting time for us, as the doctors and nurses talk more and more of "going home". When they first mentioned us going home yesterday, it was the most incredible feeling, and along with it, came somewhat of a panic. I am going to go home tomorrow, and try to make sure at least the inside of our house is truly going to be liveable. I imagine I could just get the master bedroom in working order and be pretty safe, b/c all Betsy has talked about has been how she can't wait to pile up with Jack and Ned in the bed and just "be".

Another side note is that tonight should be our last night in the 'ol Ronald McDonald House. Our friends Kelly and Franklin will be heading home to C-ville with their new bundle of joy, Emily, for the summer and Betsy is going to stay at their apartment for the next few days, until we are discharged and take Ned home, which the doctors are still tentatively planning for the beginning of next week.

Please continue to join us in prayer, that Ned's following his G-tube surgery will be alleviated, and that we will be able to come home with him next week. What a miraculous journey this has been, and what blessings God has bestowed upon us! Thank you all for all you've done.

In Christ's love,
Travis, Betsy, Jack and Ned

2008-05-06T14:25:00.006-04:00

The greatest news is that we are scheduled for Ned's final surgery (I know I've said this before) in the morning around 10am. He will receive a feeding tube (not sure which kind yet), then it should be a short road home! The attending doctor said today that they hope to have Ned back up to full feeds by Friday and home early next week! I am so excited I can't even begin to put it into words.

I am completely falling more and more in love with my little Ned every day! He is getting such a personality and we just spend each day playing games and working to overcome developmental delays....he thinks they're all games though! Last night I got to give him his first real bath! He loved it....see pictures below. For anyone who may not know me well, I love for kids to get a bath every night so this was a monumental event for me. I think that soaking in that little tub was really soothing and relaxing for him....I'm sure he slept better and felt like a new babe! The water was somewhat dirty for someone who has never stepped one foot outdoors. It just goes to show that a sponge bath really doesn't clean someone very well at all!

I have thought so much the past several days about how I can so clearly see God's glory thorugh all of this specifically from my hindsight view. I have been reflecting back to Genesis 33 where Moses requests to see God's glory and God only allows him to see His glory from the backside after he has protected him in the cleft of the rock. That is exactly what I have experienced.

God protected me in many ways other than just allowing Ned to survive. God held me and protected me from encompassing fears in situations on days when I should have felt like I was staring death in the face...I didn't feel it encroaching on us as closely as I should have. He kept me from succumbing to hopelessness and from feeling overcome by my circumstances. As I look back at where we have been, I never fully realized the danger through which we walked. And when I reflect on all the ways in which I have bore witness to the glory of God, it is overwhleming....from this view...hindsight that is.

I have seen His glory through my husbands heartfelt prayers, through my mother's and Travis' mother's loving eagerness to ease the stress of our situation by running up and down the roads on any given weekend and raising my son the rest of the time. I have seen God's magnificance in the medical staff that has been used to heal Ned, not only by their knowledge, but by their almost maternal insticts about my son and his condition. I have seen God's glory in the many, many emails and cards I have received from so many blessed people who have lifted my son up before the Father. I have witnessed God's grace by my co-workers who have without hesitation or complaint picked up my slack at work and done a wonderful job and by my Dad who had not only allowed me to be absent, but also encouraged me to re-organize my work efforts to put Ned's well-being first. As I look back at the path we have taken, I see God's glory shining all around and I feel "favored among men" to have been chosen to receive this blessing in my life and to have been able to experience God so poignantly. I am reminded of the following lyrics to Third Days' "Show Me Your Glory"

When I climb down the mountain
And get back to my life
I won't settle for ordinary things
I'm gonna follow You forever
And for all of my days
I won't rest 'til I see You again

Please keep Ned in your prayers tomorrow morning. Our wonderful surgeon, Dr. Adamson, hopes to be able to perform the g-tube and nissen procedure, but it just depends on how he feels about Ned's anatomy once in the operating room. Please pray for his continued widsom and discernment. Thank you all for all your love and concern. I apologize for being a couple of days behind on the posts? When I go home for the weekend, I really fall off on the blog entries.....so sorry. I'll try to do a better job once we're all back home! Love and blessings to you all.

Betsy, Travis, Jack & Ned

2008-04-30T09:06:00.004-04:00

We have had some pretty uneventful days, and for that, I am extremely thankful. Ned had his reflux test yesterday. Again, it showed he had reflux, but what that will mean for his surgery is unknown. I expect that Dr. Adamson, our surgeon, will come by this afternoon sometime since today is a surgery day for him. As a matter of fact, it was supposed to be our surgery day, but I think we're tentatively on the schedule for next Wednesday.

Ned continues to gain weight and look really great. I am starting to work with him on sitting up, rolling over, finding his feet and still learning to suck. He is starting to enjoy our structured and purpose driven "play time". I can't wait to get over there this morning because, like all babies, morning is his most playful time.

I can't think that I have that much more to share, or either I'm just cutting short because I am in a rush to get to him? Anyway, please pray for his continued progress and development. There are also two babies whose families are in the house who could really use your prayers today.

Talisa, who was born in March, I think, was given an hour to live after birth. She has been doing extremely well until yesterday. She started retaining fluid and they are going to have to do surgery today to try to relieve that. Please pray that this surgery will put her back on track to recovery. She has wonderful parents who are really pulling for her survival. How interesting is it that the mom's dad was the trumpet player for James Brown? Very cool.

Logan, is 9 months old and has a genetic disease that affects his bowel. He will eventually need a liver and bowel transplant, but at the moment, he has been unable to rid his body of infection for the past 2 months. His parents are atheist, kinda- they believe in the power of a god, but don't believe in God? Anyway, nobody is praying for Logan. That has broken my heart to think that little boy has struggled so and no one has been lifting up prayers for him. His father isn't the least bit interested in being talked to about salvation, but I do enjoy talking to him. He is a marine who has gone on two deployments into Iraq. I am so grateful for what he does and the life that his sacrifice offers me here at home. He knows that I believe in a God who is only accessible through the saving power of Jesus. Believe it or not, it came up in conversation in a way where we weren't discussing his beliefs at all. Anyway, Logan has been battling this infection for some time and making no progress, please pray that he can overcome it.....

Much love and many blessings to you all!

Betsy, Travis, Jack & Ned

Quick Update or Lack Thereof?

2008-04-27T22:15:00.002-04:00

I would like to be giving everyone a rundown of how we expect our last weeks in Chapel Hill to play out at this point; however, I really have no idea. As of Saturday morning, the infection in Ned's central line (which is like a deeper IV) was still there so this morning they removed that line. The infection wasn't growing out from his other blood cultures so it is likely that it was just in that line. He remains on antibiotics and we'll just have to see how this affects our surgery schedule which was set for Wednesday. In the back of my mind, I'm hoping we'll move forward on that date, but my more discerning common sense tells me to forget it. I should know more tomorrow.

Ned went to nuclear science for his gastric emptying test on both Thursday and Friday...both attempts were unsuccessful. I wasn't the least bit surprised. When they explained to me that they had to take him off any feeds for six hours, then take him down to a test where they would inject 20mL's of radioactive fluid into in stomach, I thought....there's no way. He can hardly tolerate 20mL's of breast milk on continuous feeds, I somehow knew pushing large volumes of radioactive dye in at one time would go over very well. Needless to say, he puked some of it up both days and they have scrapped that study altogether. As far as I know, they are still planning on performing a repeat upper GI study tomorrow to decide about whether or not he'll need the nissen procedure.

Other than there being no real end in sight, things are going well. Ned has been a bit tired lately, I think it's just from fighting off infection. He has been really sweet about laying up on my shoulder and even starting to tolerate some tummy time! I'll start working with him again tomorrow on that and feeding. I have talked to so many people this weekend who have been praying for Ned and it just continues to completely overwhelm me. Specifically children who pray and are interested in seeing me because they get a real sense of who they are praying for. For me, that is the most touching. My heart melts to see kids, from toddlers to teens who make a point to tell me how much they love praying for Ned...Wow! The encouragement couldn't have come at a better time when I was starting to look more toward home than toward God. I am reminded that His purposes are so much greater than mine. His works are for good and they are for the multitudes. I thought it would be such a blessing if Jack and Margaret learned some things about God and His ways through all of this, but, as usual, His plan has been exceedingly abundant.

I love you all!
Betsy, Travis, Jack & Ned

Still Up In The Air

2008-04-23T22:05:00.006-04:00

Well, Ned's fever subsided late last night (or early this morning, depending on how you look at it) and hasn't returned thus far...praise God for that. At this point the cultures are still growing and the docs aren't sure if his fever is from the MRSA or if he just has some other infection. I think the antibiotics they are using seems to be knocking it out whatever it is, but they'll know more certainly tomorrow. In the meantime, we have now been moved to a quarintine room within the NICU. You have to gown up and wear gloves in there at all times. Our attending doctor says this hospital policy is crazy since probably every nurse in the NICU is a MRSA carrier, but that's the policy. Now I sit in a silent room alone wearing gloves and an oversized robe all day with little Ned. I can't wait to get home! On the bright side, it is quiet in there so hopefully, Ned will get accustomed to a quiet room for sleep? Assuming we can knock out this infection, we still plan on performing his last surgery a week from today. Ned will have the GI motility study tomorrow and a repeat upper GI study to look at his reflux early next week. I'm just praying that this infection clears quickly and we can stay on track. Also, if anyone knows any good books, I've really got some time right now.

I am so thankful for all your prayers concerning Ned's temperature last night. I again found myself laying hands on this child and praying until I couldn't keep my eyes open. I often wonder how many times I'll find myself in this situation with him. Understanding my own lack of control gives me a greater sense of urgency when praying for Ned. If I were completely honest with myself, I would be every bit as devoted to all my prayers because although I feel like I can control other areas of my life, I actually have no control there either! I am trying to prevent myself from praying that God will stick to the given timeframes so that I can remain flexible to His time, but I'm having a difficult time not trying to discreetly mention it to Him every so often. Like I need to remind Him that I am getting weary and a little homesick. He knows. But everytime I look at little Ned while the nurses give report (a run down of Ned's medical history) to a new person on duty, I am reminded by their reaction how wonderful God has been and what a precious gift He has givnen me. It never fails that every new nurse Ned has automatically starts calling him a "real miracle baby" and I absolutely have to agree. My doctors said today that they were actually amazed that Ned has spent such a long time period in the hospital and been to so many areas of the hospital and just now picked up his first infection and that he seems to have overcome it so quickly. God has made even Ned's "bumps in the road" easier than expected. I am so thankful.

Below are some pictures of Jack and Ned's first encounter....sorry for the delay. I'm going to have to say this was the most joyful experience of my life. I'm not sure how much the delay played into my emotions, but something about my two babes meeting for the first time gave me such a feeling of wholeness that it was completly overwhelming!!!

Big prayers!!

2008-04-22T23:31:00.002-04:00

I'm running back over to the hospital tonight....they just called and Ned has spiked a fever of 104. The NICU tested all kiddos for MRSA today and Ned came back positive as a carrier. At the moment, they aren't sure if the fever is response to the MRSA, another infection or a virus. They are in the process of growing out cultrues, but results will take up to 48 hours. They have started him on two broad spectrum antibiotics. I'll update when I return tonight, just please pray that this passes....I have been so thankful not to have encountered any infection thus far. Just pray that what they have started him on will knock out whatever he has? Thank you

Technical Difficulties

2008-04-22T00:21:00.002-04:00

I know I promised to post pictures and video footage of Jack and Ned's first encounter, but I've hit a few snags. For one, there will be no video footage because apparently the "record" button on our video camera isn't working? Not sure if that will be repairable or a reason to replace the thing. It picked a fine time to flake out on me though. I did get a couple of really sweet photos of the two of them, but I have momentarily misplaced the adaptor that downloads the images from my camera to the computer. My best guess is that it is somewhere in my car, but, at the moment, that is like saying it is somewhere on the North American continent....it's may take a serious search effort to locate that....it will be at the top of my priority list tomorrow!

As for an update, Jack was more impressed with Ned than I expected. I really thought he would be completely disinterested in him. He was pretty taken with little Ned, the only downfall is that Jack doesn't have a graceful bone in his body and everytime he tries to touch or hug or kiss Ned, it more resembles a football tackle than any showing of affection. Poor little Ned is going to have to bulk up quickly in order to survive Jack! I was also extremely shocked that Jack seems to be highly protective of Ned. The nurse went to change Ned's diaper or something and he cried a little bit. Jack acted kinda mad at her and said, "Hey, what are you doing to my baby Ned" in a not so friendly tone.

Ned is continuing to do pretty well over all. As of today, he was weighing in at 9lbs. 3oz. so he finally surpassed Jack's birth weight!! Dr. Woods said today that she expects him to back on the growth chart when he is around 4 1/2 months old (He's 3 months today). He'll in the bottom range as far as a weight percentile, but he'll at least be on the chart. I don't think he's behind as far as height goes. I haven't asked, but I know he has practically outgrown his 0-3 mos. clothing so that seems about right to me.

Ned is back on the OR schedule for 04/30, we're just not exactly sure what procedure will be performed. He is having two GI tests between now and then that will help them determine what will be best. I'm really hoping for a g-tube rather than a j-tube and I think since his reflux has been so much better, that is a real possiblity now. Other than that, we are just working on some development things lately. I am trying to teach him to nurse....the doctors have been really supportive of that and I have been surprised because they can't quantify his feedings as well with nursing. I'm thankful though because he seems to take better to nursing than to the bottle- still no major progess in this area though. He has gotten much better at being held up on my shoulder and lying on his side. These seem like such little things, but for him, it's pretty big progress. We are getting into a little bit of a routine.....trying to nurse every 3 hours and taking a bath at 6pm and to bed by 7:30. He is sleeping all night so, of course, the night nurses think he is the best baby ever!

I Promise to post pictures tomorrow. I'm still praying Ned will really start eating and maybe we could go home completely wireless?

Love you all!
Betsy, Travis, Jack & Ned

The Results Are In......

2008-04-17T23:08:00.002-04:00

The MRI test was sucessfully performed this morning and the results came back showing that Ned's brain structure is perfectly normal!!! Praise God, Praise God!! He went down for the test around 9am so when I still hadn't heard anything around 4:30 this afternoon, I slipped out to the main desk where Dr. McCaffery was working on a computer. I asked him if he thought it was possible that we may still get the results in today? He said, he was just looking them up then he glanced up and at and said "normal". I jumped around in the hall and Dr. McCaffery and I were giving high-5's. When I reported back into the room, all my nurses were estatic with the news. My little man has a bit of a wandering eye, but no brain defects. For the first time in 9 months, I finally feel like there is absolutely nothing looming over me at the moment and it feels great!

Ned had a couple of visitors come by tonight who haven't seen him in some time. One of the respiratory therapists fromt he PICU and the neonatologist that I saw at UNC during my pregnancy. Both of them were shocked to see Ned off of all oxygen and growing and looking so great. Dr. Ruma, my neonatologist, was even more astounded when he learned that Ned had also been diagnosed with the aorta coarctation and had been through that repair surgery as well.
We made it through another day of no spitting up.....it's a miracle. I mean, he is on reflux medications, but he has been on reflux medications. He has never been one day without spitting up multiple times, now he has been multiple days without spitting up one time. It is great and God is good.

I am going home tomorrow to get a couple things done for work and to pick up Jack. We are planning on spending the weekend in Chapel Hill. We're going to join in the March of Dimes walk in Raleigh with some of the hospital staff on Saturday and we're going to go with some of our nurses to a music festival on Sunday. And the biggest event of all this weekend is that Jack and Ned will finally meet!!! I'm so excited to see how Jack will react to finally seeing Ned face-to-face. I'll video it and try to upload it to the blog next week!

I'm heading to bed now....busy day and a big weekend ahead. I love you all for praying my son well!

Betsy, Travis, Jack and Ned

Much to be Thankful For!

2008-04-16T23:43:00.002-04:00

Who can believe it, but today little Ned came completely off ALL oxygen...praise God! So far, he has done extremely well with it and it so so nice to have one less tube/wire attached to his little body. He also had another day of no puking....it was wonderful. He actually had on the same outfit tonight as I put him in last night around 9pm. He has never worn one outfit for a full 24 hours. His laundry typically piles up faster than anyone else's in the family because he spits upon himself so often. He also did a really great job laying up on my shoulder today. We're working on this so he can learn to roll over on his belly. You can imagine a child that has had three surgeries on his torso area isn't really keen on "tummy time" so we're slowing forcing Ned to reconcile himself to it....I think it may be working. I tried to work with him on feeding today...still no real progress there. He doesn't seem to get that process yet, but we'll try again tomorrow.

All in all he had a great day. He was alert most of the day and was really talking. When I say talking, what I mean is that he makes duck-like sounds. It's not the typicaly cooing of a baby. Ned kinda quacks at you when he tries to talk. I'm not sure why that is? It may be the easiest sound to make since his diaphram is needed to make noise? I have no idea, but the nurses and I get a real kick out of imitating him. As expected, Ned isn't that entertained by the whole thing. I am now having to hold the child all day long- he is extremely spoiled. When I put him in his bouncy or bed to go pump or eat, he cries until I return. It's very sad, I know. I am also aware that this is going to make my life at home more difficult when we get there, but that is just the monster I have created by wanting to hold him every second since they have finally allowed me to do so. He'll eventually want to get down and explore in life....I'll just snuggle him until then.

We have rescheduled the MRI again for tomorrow. I'm not sure of the time yet, but please keep it in your prayers. I realized this week that I have much to be thankful for and we have been blessed beyond measure so I'm not in the same fearful place as I was last week. I really would like for the MRI results to come back normal though. They are trying a more high-powered drug on Ned tomorrow to attempt to get him zonked out for the test. Maybe that will do the trick. At any rate, I bet I'll be able to put him down to eat tomorrow....he'll never know I'm gone. I'm going to try to work with him on his feeds first thing in the morning because he'll be so out of it all afternoon, it will be impossible.

That's about it for today- what a great day! Please continue to pray for Ned's MRI and his feeding progress. Also, for those of you who keep check on the other CDH baby links, they have a lot going on. There are several babies who are needing surgeries and others who have some serious impending reflux issues. Please check them out and continue to pray for their families as well. They have all be really good to continue to pray for and follow-up with Ned and his progress. They have also been a wonderful source of support and informaiton for me throughout this whole journey.....as have all of you!

I love you all!

Betsy, Travis, Jack & Ned

Thankful for Rest

2008-04-15T23:27:00.002-04:00

When Travis and I stepped into Ned's room this morning, it was noticably quiet. The oscilating vent (typcially sounds like a go-cart engine) which was supporting the little boy in the back corner last night was turned off. It was an erie silence. I witnessed such loving kindness from the doctors and nursing staff today as they prepared that little, young family to let their little boy go. They had taken him off the vent so that little mama could have some time to snuggle her precious child in her arms for a while. They took them into a private room where they could spend their last moments with their son in private. Some of the nurses brought their cameras from home (which are much higher quality than the NICU cameras) and took lots of pictures so they would always have some family photos. They had called "Now I Lay Me Down to Sleep" (great organization, if you want to look it up), but they weren't sure if they were going to be able to make it in time. It turns out that the professional photographer showed up so the family will recieve double the pictures. They made that little boy and his family their top priority when they had nothing left to offer them but love. It was a true picture of Jesus in action. They went out of their way and picked up each other's work load to lavish acts of kindness of these very desperate little parents in their time of struggle. While it was heart wrenching, it was truly beautiful as well.

While I was feeling very bogged down the past several days with impending tests and set backs, today I have been overcome with a feeling of thankfulness. I suppose it began last night as Travis and I listened to the doctors explain to the family that their baby probably couldn't survive through the night. They asked, "to what lengths do you want us to go to keep him alive?". From across the asile, I wanted to yell, "to great lengths.....do whatever you have to do." But that little mother, who couldn't have been over 20, contemplated all the options and weighed what she believed would be beneficial and what may just be too painful and stressful for her young son to endure. I admired her courage and selflessness. As I internalized the situation, I wondered if I too could have removed my emotions enough from that situation to be that analytical....I doubted it. I have just felt a real need to continually thank God that He didn't lead me down that path....that Ned's fate didn't include a round table discussion with all the doctors about Baptisms, burial clothes, choices of funeral homes and determinations on how to spend out last moments with our child. If I ever feel overwhelmed by a test, procedure or surgery again, I will go back to that moment when I knew how very blessed we were.

The thanksgivings continued this morning when I checked in with Ned's nurse and she said he hadn't spit up all night. In fact, he didn't spit up, throw up or reflux all day long. He gagged about 3 times all day, but it was very anti-climatic. I have just been so thankful that my little man got a day of rest. He really needed it.....he was starting to look a little sickly again. He had lost a couple ounces over the past 4 days, but tonight he headed back in the right direction with the weight again! If we continue like this (please pray that we do), I'm sure we'll wait another 2 weeks before we perform the final surgery for the feeding tube. I'm still uncertain what kind of feeding tube he will receive, but we'll just wait and see. I am only sure that all the prayers about Ned's refluxing certainly have given the child a reprieve...thank you all so much!!! I think we should just mostly be hanging out most of the week until the end of the week when we're going to try for the MRI again.....so if you can keep that in your prayers as well....I hate to keep piling on the requests?!

I love you all for praying for our family so faithfully. When we are in times of struggle, I can feel your prayers carrying us through the darkness. You cannot imagine how your words of encouragement move me and how the inspired Bible verses I recieve speak to me in my moment so perfectly. There are certain spiritual experiences that are cornerstones for shaping your relationship with Christ....this will certainly be one of mine and each of you will have played a very real part in the works that God is performing in my life daily. So if you ever get to a place in your spiritual walk where you feel like God doesn't use you, think of me and know that He has, He does and He will.

Much love and many blessings!

Betsy, Travis, Jack & Ned

Suffering for Perfection

2008-04-15T00:19:00.003-04:00

The past few days have been extremely tough for Ned and us. Betsy was home this weekend while Robin came up to stay with Ned. It all started when they went to do try the MRI on Friday for the 2nd time, and didn't get him sedated in time to make the appointment, so Ned had two days of drugs for naught. Over the weekend, his reflux troubles increased rapidly, to the point where they cut his breastmilk intake from full feeds down to 5 mL an hour and switched him to continuous feeds. Upon Betsy's arrival back in Chapel Hill on Sunday evening, he was still wretching and spitting up terribly, so they decided to try and get a central line IV access back in, in case they needed to give him nutrition from something other than the milk feeding tube. This turned out to be fruitless as they couldn't get the line in his neck because of all the scar tissue from having lines there before. A different nurse practitioner also failed to get a line in on Monday morning, so they wheeled Ned down to the operating room to put in a central line in his groin surgically, which was a success. They also put one in his head on his scalp for additional access if needed. His reflux has been pretty minimal today, but we're waiting to see what he does tonight and tomorrow, because he was fairly sedated from the surgery for the remainder of the day. He is currently getting about 10mL an hour on continuous feedings and they started giving him sugar water to supplement this.. They still have no idea what caused his major reflux problems as of late, but we're just praying that we've gotten through this.

As for the feeding issues we are having, we are still waiting on the doctors to decide which course of action to take. The surgeon who put the line in this morning mentioned that he thinks his stomach may be too small to actually get a G-tube in, as well as perform the nissen procedure (to cinch the opening between his esophogus and stomach not allowing him to reflux) or to put in a J-tube which is basically taking that same area of bowel they just put back together, making a Y out of it, and bringing one in out of the belly for us to be able to feed him directly into his bowel, bypassing his stomach. Either way, they are wanting to wait 2 more weeks to give his stomach/bowel area time to completely heal and scar up since his last surgery to put his bowel back in. This is of course, if they can control his reflux until then. Dr. Adamson came by today and spoke with us, and said he is going to get with the radiologist who did the X-rays this morning, to see exactly how big his stomach is before rushing to a decision on which feeding access procedure to perform.

We have both been struggling as of late, as we feel we've kind of hit a road block, and Ned's progress is either at a standstill or backsliding some. This is a very scary and uncertain time. I have found myself really struggling with everthing. As I left work around lunch today to drive up, I discarded my usual radio stations for some silent, alone time with God. I prayed that He would get my son and my family over these hurdles. I said I know this is all in God's perfect timing, but as He all too well knows (because I've been telling Him), we are tired and weary. I know I'm weary, and I know Betsy is weary, because being in that hospitol day in and day out drains you. I know our strenght is coming from the Lord, because it's impossible to humanly do what we're (she's) doing. Anyway, in addition to this, I also prayed that if He wasn't finished here, if He would have me or her do anything for anyone else, to make it perfectly clear. We also prayed this over dinner (if you call 9:45 dinner). We got back to the hosptiol about 10:15pm, and there was a young couple who's baby was across from Ned in the NICU. As we watched our big guy rest, we overheard the doctors talking to the parents of this very sick baby who is maxed out on the ventilator settings he/she is on. I immediately thanked God that the doctors never had the conversation we were hearing with my wife and I. We heard things like... "The support we are giving this baby is pretty much maxed out. We could be puncturing lungs right now. How much do you actually want us to do if things go badly tonight?". I could read the look on Betsy's face, as she could mine. I think we both just sat there with Ned, silently, praying. God really laid it on my heart right then, to pray with that couple. I was immediately freaking out, because those of you who know me fairly well know that that's not me. I'm not really a front lines guy, don't like the spotlight. But I knew, I hoped, the spotlight would be on God, not me. I worked myself up for it. I even asked Betsy if she would make the offer to them, break the ice, and I'd do the praying. I contemplated asking our nurse to offer prayer with them for their child. We decided to wait until they finished taking pictures of him/her, and go over and offer to pray with them before they left. It didn't quite work out. Our nurse and Betsy and I started talking about Ned and Jack, and home, and 5 minutes later I looked up and they were gone. I am really hoping and praying that I didn't miss this opportunity. I am now praying that God will present this opportunity again tomorrow morning when we go back to the hospitol, and that it's not too late.

In addition to praying for Ned, I ask that you guys also pray that we will continue to take notice, and really listen to where God is leading us, as we wait and expect God to heal our baby boy, hopefully to bring him home very soon. Thank you for all your prayers and your encouragement day after day.

In Christ,
Travis, Betsy, Jack, and Ned

Ned Delays Results

2008-04-10T23:55:00.003-04:00

This blog will be brief because I'm really tired and the day was exhausting, yet uneventful. Ned's MRI was scheduled for 9:30 this morning. I got to the hospital around 10:30 when he was due to return to the NICU. He and his nurse, Amy, rolled back into the room around 10:45....no MRI was performed. Ned had takend 4 boluses of narcotics, but was wide awake and happy as a lark. He was playing and kicking around- not suitable behavior for a test. While he appeared to be narcotic resistant, he actually just has a really delayed reaction. Around noon, he finally zonked out into a drug-induced sleep never to really wake-up for the rest of the day.

So, we'll reschedule the MRI, probably for next week, now knowing that he will need to be sedated hours in advance. Please continue to pray for normal brain structure. Also, that his lungs will remain clear. On days when he is sedated, he doesn't feel the sensation to cough to clear his lungs and they start sounding really junky....not good for a child with chronic lung disease.

I'll post more later- love you all!

Betsy, Travis, Jack & Ned

More of the Same

2008-04-09T22:44:00.004-04:00

As I entered the NICU today my nurse advised me that they planned to perform and MRI on Ned's brain. They have some concerns about his brain development and/or damage due to the fact that he has some issues with controlling his left eye. I fretted over it all day even after the doctors delayed the MRI until tomorrow. I have always noticed that his eye wandered a bit. Actually, it is much more controlled now than it was initially. I felt encouraged at the progress and just assumed it would correct itself over time or that he may need to see an opthomologist, not a neurologist! Dr. Adamson also indirectly let me know that he would prefer to put off the g-tube surgery for a couple weeks so we'll be here at least another month.

After all the news of the day, I began feeling extremely overwhelmed so I went for a little walk. When I walk or run alone, I pray. Tonight, I honestly spent the entire trip praying for myself and my family (I apologize to all others who are on my prayer list). I feel like I have compromised every responsiblity in my life. While trying to juggle them all, I have failed on all accounts. I have, obviously, no control over Ned's physical or mental development; I receive 30 second snippets of Jack's life over the phone at night which essentially to me means that I have missed the past 3 months of his life; and in an effort to spare Travis the burden of having to deal with me when I'm an emotional mess, I continually bite his head off when he attempts to console me.

As I walk I try to lay these things at the foot of the cross, but I am completely overcome with fears that may be completely illogical, but I can't seem to erase them from my mind. Once Ned has his nissen procedure (where they tighten the sphincter leading into the esophogus), he will never be capable of vomiting. While I had always hoped that my children wouldn't be partaking in binge drinking, now it could be a fatal decision for Ned. So I'm praying that I will be able to instill in my children the value of holding their bodies as sacred temples, hoping that Jack will lead Ned by example as his big brother.....really trying to be positive- then the irrational fears completely take over. Maybe Ned won't ever come to a university like this and have the opportunity to avoid making really poor decisions. I am suddenly gripped with thoughts that I may possibly always have to watch Ned struggle to perform the most simple of tasks. Maybe he won't be able to learn his ABC's which Jack mastered somewhere around age 2. Maybe I'll never be able to know him past a vague look in his eyes. I fear that the real life of my son will be trapped somewhere within where it can't get out and I can't reach deep enough to know it. But my biggest fear is that this encroaching fear that continually and quite commonly pops into my life in the form of an unknown medical anomoly will become a common fixture in our family. That it will be as normal and recurring as dental visits, that it will loom over us in a way that it will always occupy the empty chair at the dinner table.

That's when the Lord spoke to me, "Not if you dine with me at my table" I stop my walk and tensions are eased. God tells me that if I stay in close communion with Him, my fears cannot conquer me. It is amazing how one word from the Lord can calm you. I am still afraid, but now I am resolute to pray through it. Whereas, before my walk, I was contemplating the need for medication. Just as Jesus calmed the fears of the disciples when he stepped into the boat with them (John 6:18-21) and the seas and their fears subsided, as did mine when I realized that He alone could calm the storms raging in me.

Tonight I am praying that I will allow God to take my fears from me so that I can find some peace regarding tomorrow's MRI. I am also praying that the MRI will be normal. In my logical mind, I feel pretty good about it, but in the world of the "what if's", I become completely overwhelmed. I guess just knowing that there is the possibility is enough to cause me some panic. I am praying the following verses (Psalm 27:1-5)

(1) THE LORD is my Light and my Salvation--whom shall I fear or dread? The Lord is the Refuge and Stronghold of my life--of whom shall I be afraid? (2) When the wicked, even my enemies and my foes, came upon me to eat up my flesh, they stumbled and fell. (3) Though a host encamp against me, my heart shall not fear; though war arise against me, [even then] in this will I be confident. (4) One thing have I asked of the Lord, that will I seek, inquire for, and [insistently] require: that I may dwell in the house of the Lord [in His presence] all the days of my life, to behold and gaze upon the beauty [the sweet attractiveness and the delightful loveliness] of the Lord and to meditate, consider, and inquire in His temple. (5) For in the day of trouble He will hide me in His shelter; in the secret place of His tent will He hide me; He will set me high upon a rock.

Thank you for your continued prayers and concern. And thank you for allowing me to share my fears with you- they somehow loose their power when I share them and publically hand them over to the Lord....again, you'll never know how much you have all meant to me during this time...I just can't express it enough.

Lots and lots of love and blessings!
Betsy, Travis, Jack and Ned

Surgery Number 4!

2008-04-07T22:27:00.002-04:00

It was decided yesterday that Ned will need a g-tube to assist with his feedings so that he can go home pretty soon. A g-tube is basically a feeding tube that is surgically placed directly into the stomach. It just looks like a little plastic button on the baby's tummy from the outside and we'll just hook-up his feeds through that once we're at home. The benefits are that we'll be able to control his nutrition intake and get home sooner where we can continue working on his ability to feed by mouth and the g-tube will be removed when it is no longer needed. There is alway the added bonus of being able to set him to receive continuous feeds throughout the night so we can all get some much needed rest. The downside for me is, of course, another surgery! During the surgery they may also tighten the sphincter between his esophogus and stomach to held reduce reflux issues and the pulmonary docs may run a little camera down his airway to check for any narrowing places due to scar tissues since he'll be sedated. We're still waiting on the formal results of some testing today, which completely zapped Ned of all his energy, to determine what all will be done during this surgery. I'm not sure when the surgery will be performed. They had originally said it would be this Thursday; however, Dr. Adamson, who performed two of Ned's previous surgeries, said it wouldn't be on Thursday. I'm not sure if that's because he isn't in the OR on Thursdays and he wants to perform the surgery or what? We'll just see today.

I had to meet with the early childhood development people at home yesterday morning who will provide therapies to Ned to keep him on track devleopmentally once we're home. By the time I got back to Chapel Hill, Ned had already gone through a swallow test to check his refulx and he had fought them every step of the way. To say the least, the child was exhausted. I tried to wake him up to make an attempt at nursing, but he wasn't at all interested so we gave it up for the day.

Please keep this surgery in your prayers and that Ned's body will heal to a point where we can return home. Also, I am seeing God begin to perform mighty works up here amont both RMH residents and people at the hospital. It's just the beginings of some things, but I am praying that I can remain focused and alert and not get my sights set on home too quickly. I have been reminded of the disciples when they fell asleep in the Garden the night before Jesus' crucifixtion and His heart wrenching words, "could you not watch for me even for one hour". I realize that God may be wanting me to be here for His purposes and even in times when I'm tired and just burnt out with being here, the time we remain here will seem short in retrospect. But if that time could change the heart of someone or just plant a seed in someone's heart, it would be well worth all our time and suffering. I mean a little earthly inconvenience compared to an eternal life.....no comparison. Please pray that I will be able to keep all of this in perspective.

I love you all so much and I again, the gratitude that I feel for all the prayers I have received cannot be fully expressed.

Betsy, Travis, Jack & Ned

The last leg of the race

2008-04-02T19:30:00.003-04:00

We have finally started attempting to teach Ned to eat by mouth...he isn't very interested in the whole prospect. He is taking about 5cc's by mouth....his feed volume is 65 cc's every three hours? You can see we have a really long way to go. He doesn't really understand the concept of sucking...just chews and happens to swallow, while gagging, some of the milk. This is obviously going to be our biggest hurdle on the road to home. Please keep this in your prayers. He is such a hard little worker though and has kept such a pleasant attitude about continuing to try. I am thankful he isn't violently resisting or I would feel somewhat abusive! We'll just keep at it until he starts to get the hang of it.

He has weaned down on the flow of the vapotherm oxygen. Today he was on 2 liters and they'll probably bring him down to 1.5 liters tomorrow. Once we hit the 1 liter mark, we'll transfer to straight oxygen which we can bring home with us if necessary- so we're really close in that respect.

I have several other prayer requests that don't relate to Ned at all. First, one of Travis and my classmates from high school has a father who has suffered a massive coronary attack last Friday. He has undergone quad bypass surgery and valve replacement but is still struggling with the recovery. Please pray for his healing and his family during this time...they have been very faithful in praying for Ned and I would like for their family to feel the same support we have felt.

I also met a girl in the Ronald McDonald house who is pregnant with a son who has been diagnosed with CDH and hypoplastic left heart syndrome. Her name is Kelly and her son's name is Charlie Ray. One of the doctor's in Charlotte misdiagnosed Ned with the same heart defect early on in my pregnancy and most of what I remember is that the repair for that heart defect requires about 4 surgeries. I spoke with her a little bit about how God worked on me during my pregnancy and what a miracle Ned's healing has been. I am hopeful that by seeing what God has done for Ned, she can find hope and peace in her situation. She isn't due until May, but has had some early signs of labor so she is staying her until delivery. Please keep her in your prayers.

That's all for tonight....gonna add some pictures below. Ned is really gaining weight...he's up to about 8lbs. 2oz.....Yeah!!!! They weight gain is the highlight of my day, everyday!

Much love and many blessings,
Betsy, Travis, Jack & Ned

Mother's Instinct

2008-03-31T22:45:00.003-04:00

I hadn't planned on posting again today, but with the way my mind works, I may forget to the latest updates by tomorrow night if I don't share now. First, Ned has gained 1.5 ounces each of the past two days which is tremendous. They look for around 30 ounces per day and he has been gaining approximately 60 daily. I hate to say it, but you can mostly see his weight gain around his face....specifically his chin area. He is obviously going to put on weight more like his dad. If he were going to gain like me, he wouldn't still have that super-skinny, froggy-looking hind end!

They began fortifying Ned's feeds today with extra calories.....it didn't go so well. He was extremely uncomfortable and projectile vomiting from around 11am till 6pm. About 4:00 I asked the nurses if they thought it was the increase in the volume of the breast milk or the additional calories, and they felt unsure. Then I asked what exactly they were using to fortify the breast milk. They explained that it was a lactose-based powder with additional nutrients and calories. The light bulb went off in my head...."Did you say lactose based?" For those who didn't know Jack as an infant, he was extremely intolerant to dairy. While nursing, I went on a strict dairy-free diet to try to prevent him from screaming and crying in pain for hours after eating. Even at that, there would be times when something I ate must have been cooked in butter or something because soon after nursing he would completely fall off of the wagon. I eventually switched him to soy formula and he instantly became the happiest child I've ever seen. So, with that short historical background, I decided when Ned was born to go ahead and cut out all dairy to prevent him from experiencing the same problems. I knew that he may not be lactose intolerant just because Jack was, but I really wanted to prevent any additional digestion or pain issues with Ned....just felt he had enough on his little plate. I explained all of this to the doctor and relayed my fear that since this was his first introduction to dairy, it may be that he is showing an inability to digest it. Thankfully the doctor entertained the thought and removed the fortification from further feedings the rest of the night. When his 6:00 feed began, Ned finally fell asleep. He slept until I left at 8:00 and was still asleep when I called around 10:00 and he hasn't spit up one time since the fortification was removed. I am so very thankful that I thought to go ahead and cut the dairy out of my diet from the beginning or the doctors wouldn't have ever known that it was the dairy causing the severe reflux, it would have just been written off as result of the CDH.

That's all for tonight. I'm going to bed to get some rest....big day tomorrow. I'll be gearing up for my role in the NICU parent introduction video they are putting together. They have asked me to be in the movie in still shots showing how parents use different areas of the NICU facilities.....it's my big movie debut!? I'll let you know how it goes- I'm pretty sure it will be awkward.

Please continue to pray for Ned to learn to eat by mouth....the doctors are acting really skeptical that he will be able to pick up on it this late in the game. They are beginning to talk about a g-tube (a temporary feeding tube directly in the stomach) more and more frequently. I told the doctor today that I want to begin trying to feed and give it a good effort before I'll even be willing to discuss a g-tube. I've just been praying that God will return that sucking reflex to Ned, but that He will prepare me for whatever direction He chooses for Ned at this moment. Please join in that prayer with me.

I Love you all dearly!

Betsy, Travis, Jack & Ned

Happy CDH Awareness Day!!

2008-03-31T14:33:00.002-04:00

Today is officially CDH (Congenital Diaphragmatic Hernia) awareness day. The goal is to educate as many people as possible about this birth defect which is so life threatening yet so unknown. CDH actually occurs more commonly than Spina Bifida and many other birth defects of which are much more commonly known; however almost no one has ever heard of CDH prior to their own child's diagnosis. Because there is so little awareness regarding CDH, there is also little research being done into its causes, but many medical facilites are beginning to notice a significant rise in CDH cases. Please take the time today to educate others about CDH. If you're feeling exceptionally moved by the awareness efforts, you can feel free to contact your state representatives or the governor's office to request that NC proclaim March 31st CDH awareness day. Upon the initial request, NC governor informed one CDH mother that there were too many medical problems to claim one day for awareness of any single "disease". I believe NC is the only state that has been contacted by any member of Breath of Hope that has flatly denied to declare March 31st CDH awareness day.....how embarassing!

Now, the awareness symbol for CDH is a turquoise ribbon. You may be noticing some shirts around town that read..."I wear turquiose for Ned". These shirts were designed and printed by a small group of college and high school students that God has allowed to be placed in my life for my benefit. They think I teach them, but the truth is that I totally learn from them. They emailed me a sample of the shirts they had designed last week and I was so touched and moved. They have made shirts for my entire family, Travis' family, and our Bible study teacher and themselves. There are no words for me to express the deep love I have for that precious group. I have sincerely been praying this past week that my boys will grow to be as strong in their faith and ability to show love to others at such a young age. My world is blessed to be a part of their growing in the Lord....just to watch them strengthens me!

How is little Ned on CDH awareness day....just fine. We still haven't met with the occupational therapist. I'm thinking she will surely come today! She was sick last week so she's been held up trying not to spread germs I'm sure. Ned has continued to gain weight very nicely and is currently weighing aroung 7lbs 11oz. He continues to tolerate feeds pretty well and we'll just have to see how the eating by mouth thing goes. In the meantime, he is spending time hanging out in his bouncy seat and the swing.

Trav and Jack came up on Sunday for my birthday....the big 3-0! It was absolutely the best birthday ever even though I completely dreaded it!! I was little sad and depressed when they drove off a little while ago, but I'll settle back in shortly. For my big thirtieth birthday, we went and saw "Horton Hears a Who" (very cute movie) and ordered in Chinese....very exciting stuff!! I got to snuggle up with my family and just have some normal time with them...it was the best gift I could have received.

Jack visited with Dr. Adamson this morning, but Jack's hernia wasn't detectable during the visit. Dr. Adamson said just leave it for now and if it gets worse or becomes painful, he'll operate. I'm really hoping that it has miraculously healed itself? Maybe we'll never see any evidence of it again...that would be nice.

Love and many blessings to you all!
Betsy, Travis, Jack & Ned

Funny How God Works!?

2008-03-29T09:35:00.000-04:00

There isn't very much to report on Ned's condition today. He has continued to do well with the feeds increase. As of this morning he is getting 36mL's every three hours...I think. I could be off course a little, but that figure changes so frequently that I loose track of where we are and what day it is?

The occupational therapist is coming today to work with Ned on his sucking and swallowing and range of motion. Because I fully realize that this hurdle is going to be our longest process, I was gearing him up for it in his sleep last night- which means I was praying over him! I was just basically asking God to allow that natural, inate instict to return to little Ned. When I looked down, Ned was just sucking away on the inside of his jaws. I thought to myself, maybe now would be a good time to offer him the passy. So I prayed, "God, if this will help him, please let him take it." He didn't even begin to open his mouth for it...just kept sucking away on the inside of his mouth. So I start asking God why Ned won't take the passy. God said,"Betsy, you asked ME to help Ned and I will, but I don't need your assistance." I found that God's reasoning made perfectly good sense to me so I took the opportunity to leave early and go to the grocery store.

I tell you all of this so I can share how God is working even in the little things like a deviation from routine or schedule. While I am in the kitchen putting up the groceries I finally took the time to go purchase, I met a lady whose 2-year-old fell into a brush fire and has severe burns (his name is Veda). As we were talking and sharing she began to tell me how she had never really given over her whole self to Jesus and how she felt God was using her situation to bring her into a deeper relationship with Him. I had the opportunity to share with her how God had worked in my life and through Ned's situation and it was really good! She'll be here for several months so I'm sure I'll be seeing lots of her. But, if I hadn't listened to God telling me that he was capable of tending to Ned all on His own last night, then God wouldn't have been able to use me at the RMH to speak to a woman who is seeking!! I'm so glad I left Ned....it allowed me to catch another glimpse of God which is always so exciting....back on a mountain top!!

All I have to say today is Go Heels!!!

Love and Blessings to you all-
Betsy, Travis, Jack & Ned

In For the Long Haul

2008-03-28T10:35:00.000-04:00

This will be really short and sweet as I'm walking out the door to go to the hospital. The doctors assured me yesterday that I would be here for the March of Dimes walk on April 19th, in fact, they assured me that I'll be here at least another month? Oh Well, at least I know what to expect. I think God could get Ned moving quicker if He wanted to....we'll see.

Not much change yesterday. Ned didn't gain any weight, but considering they had given him extra doses of a diuretic to dry out any potential fluid on his lungs (a concern with the temperature he was running), they said it was good that he didn't loose any weight. They weighed him again last night so I'm anxious to see how yesterday did for him.

They continue to increase his feeds every 3 hours by the feeding tube. He should be up to 32 mL's as of this morning at 8am. They have him at a goal of 65mL's so we're about a week away for hitting that mark at our current increase rate. He has tolerated the increases well and I'm so thankful he hasn't experienced any serious reflux issues. The occupation therapist didn't come by yesterday...I'm going to push for that a little more today. Our doctors put in the order, so I'm not sure where she was?

That's the highlights. I'll post more details tonight. Lots of love!

Betsy, Travis, Jack & Ned

Such a Little Trooper

2008-03-27T09:04:00.004-04:00

Yesterday started out a little rough for our little man. He was running a low grade fever and it seemed to have him completely out of sorts. He wasn't extremely agitated, but much more so than normal. Our nurses were really commenting on it because they say his temperament is normally so much more docile and accepting. Even yesterday, he really didn't cry much at all. He just restlessly squirms in his bed and looks at you with that very serious face, but I know he is uncomfortable because his heart rate and respiratory rate were running pretty high. His fever broke around 3pm and didn't return. He rested most of the rest of the day- I'm sure he was zonked after being so worked up all morning.

They have continued to increase his "dump"feeds steadily with no problems. He is now receiving 23mL's via the feeding tube every three hours. Today Ned will start working with the occupational therapist on learning to suck, swollow, and breathe and they'll work with his range of motion. Because he has spent most of his time in a bed and hasn't been moved around very much, he is as stiff as a board. They want to work on stretching his muscles a bit. I think the stiffness in his arms is one of the reasons they sent off yet another genetic test. I don't believe that he has a genetic disorder, but I think they're just wanting to cover all the bases. I'll be glad when we don't have any more of those looming over us anymore though.

I spoke with Dr. Adamson (our surgeon) last night. He said that he felt sure that if we were going to run into any major issues with this last surgery (like finding another unknown blockage), we would have seen some evidence of it already. So, I'm so very happy and thankful to be able to report that it seems that we may have finally gotten all Ned's anatomy back to some semblance of normal- at least it is functional!!!! I will be bringing Jack up to meet with Dr. Adamson on Monday. For those of you who don't know, they found a hernia in Jack's groin about a week before I came to Chapel Hill to deliver Ned. I have just pushed his surgery off as long as possible and have decided just to bring him up here where I know the surgeons so well. Plus, it will be easier for me to have both my sick children near me rather than spread across the state.

Other than that...things are going great. I am planning on setting in on a real routine up here in the next couple weeks. I need to get back in a habit of setting myself some timeframes for Ned, work, exercise, and time with the Lord again. Lately, I've just been floating through each day and I'm feeling like a live in a time warp. I began my study time again yesterday and was, of course, amazing at what the Lord showed me when I took the time to listen to Him.

So far so good, all the digestion prayers are really working for Ned. I am going to ask, in a very round-about way today, how long our doctor thinks we'll be here. There is a March of Dimes walk on April 19. I think I'll tell Dr. Woods that I'm planning on walking with them if I'm still here, then I'll ask if she thinks I'll still be here!! I'm so hoping she tells me not to make big plans for the walk, but I think she may very well tell me to put on my sneakers! We'll see.

Thank you all for your continued prayers and support. Much love and many blessings to each of you!

Betsy, Travis, Jack and Ned

(I took some pictures yesterday, but they weren't that great so I didn't post them. I'll try to get some of him in his bouncy seat today and post tonight!)

Change of Plans

2008-03-23T20:52:00.002-04:00

Ned is recovering from surgery quite well. He finally had a bowel movement and began feedings again this morning. He started off with a little pedialyte, but has progressed to breast milk. So far so good, no spitting up.....yeah!!! Mom and Dad have been hospital duty over the weekend while Travis and I came home so I've just been getting 2nd hand reports. The last word in is that Ned is loving the vibrating bouncy seat I sent up there this weekend and is resting really well in it. I was thinking that the vibrating motion may help keep any fluids from settling in his lungs when he was so sedated last week, but now he is back off the pain medications again, Yeah!!!, and the seat is just serving as a place of comfort.....which is great! The poor child deserves a little luxury treatment, I think.

I had planned on going back up to Chapel Hill tomorrow, but I have developed a head cold. So, Travis will have to fill in for me until it passes. I'm just thankful that it didn't really develop until Saturday so I think I should have been away from Ned long enough not to have passed it on. I started to worry about it, but I remembered how much God had protected him from so far and figured a cold wasn't beyond His capabilities.

As I mentioned before, I have spent much more time this Easter reflecting on the crucifixion than before. I have found myself identifying more and more with Peter than ever before. I used to sorta see him as a traitor for denying Jesus until I realized that every time I don't glorify God for the blessings in my life before others, I too am denying Him. I have thought a lot about how Jesus must have been preparing those disciples for their mission after He left. He knew that if those twelve didn't carry the message forward, the rest of us would perish. When you look around at Jesus' influence today, it can trace back to the obedience and faithfulness of twelve men. Isn't that amazing? I wonder if Jesus would have or could have chosen me for such an awesome task and responsibility. He knew they wouldn't fail, but He knew they would stumble. I've just thought how He must have been praying over them knowing what they would endure and loving them so for it! The one thing I have learned about Jesus is that His plans have existing from the beginning of time, they are enduring and they are perfect. He knew those twelve before they were created, He knew their purpose, He knows ours.

I watched a sermon this weekend that speaks to His plan for us like nothing I've ever known before. If you watch it, you will understand more than ever how God has always had a plan for our salvation since the beginning, since creation. If you can possibly take the time to find this sermon and watch it, please do. It is "How Great is Our God" by Louie Giglio. I know you can find parts of it on youtube, but you can probably find it in its entirety on the web somewhere. It was a real eye opening experience for me. It defines the purpose of the cross in a new metaphysical perspective.....wow!

Much Love,
Betsy, Travis, Jack, Ned & Margaret

Beginnings of a Comeback

2008-03-21T00:36:00.002-04:00

Ned began on his road to recovery today. It began with extubation first thing this morning. He was put right back on the vapotherm at 3 liters of pressure which was exactly where he was just prior to surgery. He was stating at 100% tonight so I imagine they'll continue weaning him on his pressure again tomorrow. If I can say anything about Ned today it is that he has gotten some really good rest....almost too good! When Travis and I visited this morning, we decided not to hold him or mess with him today since he was sleeping so well. We just wanted him to be able to recouperate from the surgery without us causing him further pain where he received his latest incision. So, during the morning visit, we just looked at him for a couple hours. That truely is a blessing most people really don't experience with their children. I know with Jack, I would watch him sleep for a few minutes, but then I would take that time to try to make some headway in my "to-do" list. I spent most of the time he slept, washing clothes, taking a shower, making beds....just daily chores. However, since I have absolutely nothing I have to do on a daily basis here, I have spent entire days doing nothing but looking at my son rest (or struggle-depending on the day). In that time, I have learned so much about him. I know which side he prefers to lay on, his favorite song ("God Will Make a Way"), how he likes to keep his arms up at his face, how he cannot stand a even a damp diaper and how he roots his head up into my hand when I lay in in the bed and he is wanting to be held. I'm not sure if I missed those clues with Jack because I was a first time mother and the least little sign he showed of discomfort, I panicked and called my Mom to come help me or if I just wasn't taking the time to pay close enough attention. At any rate, I am thankful that I have been able to really know Ned at any early age.

When we returned to the hospital tonight we found a child that was so drugged up he had neglected to cough and clear the secretions out of his lungs all day. We couldn't get him to awaken at all so they cut his pain medications some more and put Travis and I on physical therapy duty. All that basically means is that we rocked Ned and beat him on the back for hours to try to break-up any congestion in his lungs and stimulate him enought to provoke him to cough on his own. Travis went first and although he was somewhat unnerved at first, he became quite comfortable swating little Ned on the back. After almost 4 hours of the therapy session, we went to put little Ned back in his bed (with the nurses help). As soon as he got back in his bed, he began de-stating. His stats were hanging in the upper 70's to mid 80's. Our nurse was suctioning his lungs and getting up some fluid, but then the respiratory therapist came in and noticed that the vapotherm had become disconnected....he wasn't getting any air? Once she hooked him back up, his stats jumped right back up to 100%!!

One more thing....have I mentioned how I love very specific prayers and how I love to see them answered. I had requested that everyone pray that Ned will be able to learn to suck and swollow and tonight we got a little foretaste of his ability. When he had gotten really upset during the de-stat episode, so Travis went to offer him a passy when it was over. I was thinking that he was going to get more upset since he has always clamped down like Fort Knox and rejected sucking on the passy in the past. However, much to my dismay, he sucked on the passy for about 5 minutes (sucking and swollowing)....just one day after I began to pray for just that. How precious is God and faithful to his followers.

Please keep the prayers coming- they're obviously working!

Love you all!!!
Betsy, Travis, Jack and Ned

All surgery is now a thing of the past!

2008-03-19T21:17:00.002-04:00

We are so thankful to be able to report that Ned's final surgery went as seamlessly as the first two- Praise God!! As usual, it lasted much longer than expected, but I think that is mostly because our surgeons are so "unapologetically anal" (their words, not mine) and I am so very grateful for their attention to detail! They were able to repair Ned's bowel through the existing opening where his ostemy was exposed, which was the best case senario causing the least stress to and invasion of his bowel area. Hopefully, that will allow him to start healing and digesting again in the very near future. Since the lower portion of his bowel has never really been used, they have told us that there may be some complications of which they are unaware, but they haven't seen any indications to cause suspicions of future problems so we'll just take that as the first step in a very positive direction. He is still on the ventilator, but they plan on extubating him tomorrow. They just wanted to give him through the night in case they felt the need to really sedate him which may have caused his breathing to be more shallow and could affect his oxygenation. So far, they certainly haven't over sedated him. Ned has built up quite a tolerance to the narcotics and the NICU doctors aren't as liberal in their dosing practices as the PICU so it took them quite a lot of "baby step increments" to get him restful following his surgery. When we got back to his bed, he was wide awake with that breathing tube down his throat. The poor child was extremely agitated, but, of course, he couldn't really cry with the tube back down his throat. I was extemely relieved when they were able to get him settled down a bit with the drugs.

I was also very surprised at the relief I felt following his surgery. I think I really had my "game face" on going into this once. Logically, I understood that this surgery wasn't near the major operation as the first two, but I felt some real uncertainty going into it. I kept having fears that I was expecting too much from God. Not that God couldn't provide, but that at some point, I will have used up all His blessings for me and my family for a certain time period. Almost like I felt that each person only received a certain allotment and I must be near the end of mine? All I could do was pray through it. I prayed that God would continue to show Himself in a real and mightly way through Ned's healing and that I would have complete confidence in His faithfulness to my son. But the sheer lifting of the burden that I felt once Dr. Adamson walked through the door showed me that I hadn't let go of the fears as well as I thought I had. I was still harboring them and carrying them around with me and I see now that I have burdened unecessary weight. As a follower of Christ, my yoke should feel easy and my burden light.....my problem was that I continued to carry what I should have laid down at the foot of the cross.

When I was little we lived beside my grandfather, Papa Ned. When I would leave his house and head home at night I would start walking. There was a lamp post set in his yard that I always passed on my way to our side door. As I began my journey home, I always felt very strong and confident from Papa Ned's front porch to the lamp post, but once I passed the lamp post and the light was behind me, I became fearful of the night. I imagined all the terrible things that could be at the edge of the woods just behind our houses. So from the lamp post to my house, I ran! I mean I ran like something was chasing me and once I got home, it was such a feeling of relief to see that nothing was close to attacking me...I was completely safe. This is how I have felt this week. I felt like I had gone past my mountaintop experience a bit and had settled into a bit of a routine, but once I had passed that glorious glowing tall light, I began to be overcome by my fears. And it wasn't until today when Jesus showed me how I had always been protected and kept safe that I found my comfort and relief in knowing that I was home....living and walking with my Savior.

I believe that our prayer requests will mostly revolve around Ned's eating and digesting issues. For now, we're praying that we'll be able to work through some exisitng reflux issues and that he will begin to learn to suck, swollow and breath all at one time while taking in enough volume to grow. Please continue to pray that Travis and I won't get so focused on Ned's clincial condition that we begin to neglect the spiritual health of our family. It is important that we continue to leave Ned in the hands of God and allow Him to use our family for His purposes even now.

We love you all and we are so humbled and thankful for all the love, prayers and support (I just can't say it enough)!!! As we look toward Easter this holy week, I have a greater understanding of the miraculous work of Jesus while He walked this Earth and deeper grasp of what a sincere sacrifice it was for God to "plan" for His son to suffer and die. This experience with Ned has shown me much and for the first time, this Easter will mean much more to me. My focus will not be on what Jack wears to church or what we eat for lunch, in fact, I haven't picked up one thing for an Easter basket. I just want to start now teaching my boys about the resurrection in a way that they may not ever take it for granted in the way that I have in the past. Happy Easter everyone!

Much Love!
Betsy, Travis, Jack & Ned

In Surgery

2008-03-19T11:07:00.002-04:00

Just wanted to let everyone know that Ned is in surgery now. We arrived at the hospital early this morning in time for Betsy to hold him for about an hour before they wheeled him to the OR. They took him back about 10:00am, and said the surgery to put the ostomy back in and to go ahead and circumsize him with take a few hours. We'll post and let everyone know how everything is as soon as we get a chance. Thank you again for your prayers.

Love,
Travis, Betsy, Jack, and Ned

Awaiting Surgery

2008-03-18T08:58:00.002-04:00

I have joined Betsy for the week in Chapel Hill, and Ned is still doing well. I got to hold him for the first time in a few weeks which was great. He actually gained a little weight over the weekend, which we were getting concerned about since he was on somewhat of a backword slide. He gained 40 grams which is a little over an ounce up to Sunday night, then gained another 20 g Monday. Hopefully when they put his illiostomy back in tomorrow (Wed), he'll get the Dellinger/Agner appetite going and really pick up some weight so they rest of his body/organs can grow. For now, he's in a little spit up mode, and Betsy is certain it's her breastmilk making him coliky like Jack was for several weeks. The doctors are just thinking it's normal spit up for now, and maybe that it's just the change back to breastmilk. The NICU ran out of breastmilk while Betsy was at home this weekend and started him on formula, so now we've hauled the milk truck back up to UNC to resupply them. We have been storing the milk at home since the NICU/PICU started running out of room.

Betsy and I have just been in awe with all the prayers being lifted up for Ned and the rest of our family. As we look back at where we've been so far on this journey, it is just awesome how evident it is that God has been, and is in, control of this situation. Looking to what lies ahead, we are confident He will continue to work in Ned's life. We continue to ask for your prayers for our family and the journey that remains.

Well, we're heading back to the hospitol, so we'll post later on.

Thanks again,

Travis, Betsy, Jack, and Ned

Final Surgery Scheduled

2008-03-16T10:23:00.003-04:00

Ned will have his ileostomy put back down on Wednesday. Because he is still struggling with nutrition and weight gain, the doctors feel that getting him put together again is key to his recovery. Ned has only gained 5oz. since birth, but he has grown almost 2 inches, so he is extremely skinny! It is also important for his body to start absorbing enough nutrition so his body can grow his lungs and regenerate liver cells that were damaged by him being on IV nutrition for so long.

I am feeling extremely anxious about this surgery for some reason. It would be considered a substantial surgery; however, not as risky as his first two. I think I'm so afraid because Ned is so much better now, I fear a backslide. He is wearing clothes and waking up and I'm really getting an opportunity to get to know him. When he had his first two surgeries, we had nowhere to go but up, because he was so unstable. I have been thinking about the Israelites in the desert a lot this weekend. When they were wandering in the desert and had nothing, their faith and trust in God was much stronger, but when they got to the edge of the promised land, on the verge of receiving the fullness of God's blessing, they became too afraid to face the giants in the land. I want to have the courage to receive God's blessing and to believe He will deliver Ned just as He has shown me that He will. But I am learning that fear is a very powerful influence. When facing fear, I find that my focus has to be completely on God or I find myself completely focused on my fear. I am in that tenuous place now, but I am praying that I can continue to believe in His promises!

Please continue to lift Ned up this week in your prayers. His breathing has come a long way, but in order to conserve calories, they have ceased weaning him any further at this time. He'll most likely have to go through the whole weaning process again anyway since he'll have to be intubated for the surgery. Hopefully, since he is stronger now, it won't take was long. Mostly, please pray that this surgery will allow Ned to start absorbing more of his food so he can start growing and healing.....that's our biggest hold up at the moment. But, now that we are back in the NICU, that is what they will focus on and that is where they are the experts.

Thank you all for your continued love and support.

Betsy, Travis, Jack & Ned

One Crazy Day

2008-03-12T10:12:00.002-04:00

Yesterday was quite hectic in Ned's little room. We had some issues with the air tube from the vapotherm again. Everytime I looked down, that tube was in two pieces and poor little Ned wasn't getting any support. I tried to hold him and the airway tube, but he had already gotten so worked up working so hard to breathe that he was moving way too much causing the nasal cannula to pop out of his nose which didn't help matters at all. I finally put him back in his bed and called the respiratory therapist to replace all the tubing. It turns out that the nasal cannula he was using didn't match the vapotherm tubing and that's why it kept popping off.....good to know! They had also been trying to wean him off the vapotherm yesterday, but with all of that going on and the weaning reductions going a bit fast in my opinion, he ended the day back up at 5 liters (he'll need to get down to 1 liter to transition to the regular oxygen/nasal cannula).

After we worked through all those respiratory issues yesterday, Ned had some vomiting problems last night. Around 8:00 he began acting really unsettled and uncomfortable. He was just jerking around in the bed, his heart rate and respiratory rate were on the rise and then he started retching and throwing up. It definitely wasn't spit up like I used used to with Jack. You know, that kind of comes out of nowhere. One minute you have this smiling happy baby and the next second, spit up is everywhere, but the baby seems to be totally unware that the event has occurred. This was more like an adult would wrecth down deep before being sick with a stomach virus. His little body would heave and heave and then just a little bit of milk or medicine or whatever would come out. They finally stopped his feeds for a couple hours to give him a rest. They were going to restart them at a reduced rate until this morning when they plan to lower his feeding tube past his stomach into the upper most part of his intestine. When I spoke with his nurse last night around 1:00, she said he had started acting very agitated and uncomfortable again, so she gave him an extra dose of ativan and he was resting fine after that. I am really praying that the lowering of the tube will help him today because it is terrible to watch a child his size hurt and struggle.

Ned's personality doesn't help me feel any better either. I am learning that Ned is a very serious child. He gives me this furrowed brow look all day whenever anything isn't going well. He doesn't really cry much at all, he looks more perplexed and concerned over his current condition. Even when he's feeling good and I try to play little games with him, he gives me that same look of complete disinterest? I even noticed yesterday that when he smiled in his sleep, he immediately caught himself and replaced the smile with a disconcerted frown. I, of course, found that extremely funny.....but he, of course, didn't.

On a kind of positive note, at the moment the PICU is full. If any emergencies come in, Ned will be transferred to the NICU. That is promising because that means he is the least sick child in the pediactric ICU at the moment. I'm just in such a routine and comfort zone there, I hate to have to leave. The vacancies may change at any minute and that plan may go out the door (sadly to say), so we're just taking it as it comes at the moment. They didn't call me last night, so I assume he'll still be in his same room when I get there this morning?

Hopefully, a speech therapist will be by today to start working with Ned on learning to suck and swallow- that would be a huge progressive step for him. The surgeons are wanting to postpone his final surgery until he is absorbing more of the food he is taking in. They made adjustments to the breast milk yesterday and believe this will help him. I don't think he output as much yesterday either so hopefully that problem may soon be corrected!

Our same issues still remain, breathing and eating. Please continue to pray that God will begin to allow Ned's body to function in the way in which it was designed. I have no fears that God can't or won't heal Ned's body, I know it will all be in His ordained timing. I believe that timing is for purpose and I'm just praying that I'll be able to seek and find His purpose in His plan. I don't want to leave this place in my life and feel like I missed any of what God had in store for me, but sometimes I get caught up in the medical here and I forget to look for God at work around me. Today I am praying for clarity, so I can discern God's call from life's distractions. I have to remember that I can't fix Ned, only God can, but He will use me for other good if I allow Him.

Much love and many blessings to you all!

Betsy, Travis, Jack & Ned

Waiting and Watching

2008-03-11T00:05:00.003-04:00

Although we had hoped to be able to meet with Dr. Adamson today regarding putting Ned's bowel back in his stomach cavity, he wasn't in the hospital due to several late night emergency surgeries. From a practical viewpoint, I can see how we weren't his priority! He sent word that he would come by to discuss it with me tomorrow and I really appreciated him making sure that I was kept informed, he could have easily just not shown up until tomorrow- I really wouldn't have thought that much about it? Hopefully we can get setup for that final surgery tomorrow....we'll see how it goes!

Otherwise, Ned had a pretty good day. We had some real troubles with the tubing for his oxygen. It kept coming apart and I would suddenly notice that I couldn't hear the air flowing out of the nasal cannula. Sure enough, when I would look down, there would be the air hose just dangling in the air, not connected to the vapo-therm at all. Needless to say, I unnecessarily panicked. I was in such a furious hurry to reconnect the air hose, that I have gotten it completely tangled with all the other wires. In fact, it occurred several times and by the end of the night, I could hardly get the child back in his crib for the massive knot of wiring that needed to be placed "comfortably" in the bed with him? They also reduced the flow on the high-flow oxygen he is currently getting. When I left, his oxygenation stats had decreased some from like 100% to 94%. I think they will either start to trend back up, or they will start to trend downward, in which case they will increase the flow agian......this breathing is such a process for him! The child is not a fan of change in any way, shape or form- it is a trait he inherited from his father!

I have met a wonderful follower of Christ up here, her name is Melissa. Melissa is one of the few people I have ever met who naturally instill a sense of joyful peace in you as you speak to her and watch her face. Her son, Joel (pronounced Joe Elle) is in the room beside Ned. Joel is in the 8th grade and is being treated for a gunshot wound to his head. Melissa and her family are believing God is going to heal Joel and I have been blessed just to have met them and been given the opportunity to witness thier faith. Please pray for Joel. Melissa firmly believes God has given her this trial to teach her joy in the suffering. Please also pray that she will be able to experience that joy....I certainly know she spreads it!

That's the thing about the PICU, it is a group of families all dealing with serious medical issues that nobody ever thinks they are going to have to face. There is another child on the unit who has had a serious allergic reaction to penicillin and his skin is eroding off his body. Another infant girl is on ECMO. When I walk by her room I am so reminded of why I prayed so diligently that God not allow Ned to need that treatment. Although it is such and extreme envioronment, wrecked with stress, in ways I love being here. I may have developed that mental/behavioral disorder like when kidnapped victims begin identifying with their abductors....I often think that is possible! The truth is that this place is where I have last seen God so clearly and I feel drawn here. There were many examples in the Old Testament where people would return to places where they had built alters of remembrance. They were clinging to those times and places where God had revealed Himself and made Himself known to them. I understand that affection for a place now like I never did before.

One last thought for the night. I was walking and running a bit tonight (very well may not be able to crawl out of the bed in the morning), and I was reflecting on that book I read in college "In His Steps". I love the entire concept of the book because it is just about a group of believers who choose to start living their lives just like Christ. To seek the will of God in every small detail of their lives and to seek how that will change their lives and the lives of those around them. As my mom would say, "I was daydreaming that" it would be amazing if people would really make that change, that commitment. I see how each persons obedience makes such a difference for others, how much more would the obedience of the masses make a difference in this world? As I arrived back at the hospital, I saw a group of kids being driven around on a scavenger hunt...it brought me such joy. My mom used to organized really detailed scavenger hunts for us, in fact, that was what we did for my 16th birthday party. I always loved the excitment over finding the next clue and then rushing as quickly as possible with the group to try to find the answer and get to the next clue.... For me, the fun of the adventure was endless. Then it all made sense to me, that's what it would be like if we all lived in obedience seeking God's will at every small turn and making decisions for Christ rather than for our finances or appearances or any other short term high of life. We would be working together to seek out God's great adventure and once we received the joy from being used by Him in one area, we would be excitedly anticipating what He would lead us to next. It sounds so fun and joyful, wonder why we don't all choose that path everyday?

That's all for tonight, I must get to bed. I love you all dearly. I appreciate your williness to continue to pray for our child and your interest in his life. I hope you all have a glorious day!

Betsy, Travis, Jack & Ned

1st Trial a Success

2008-03-10T00:37:00.003-04:00

Well, I'm finally back on-line. I had planned on posting from the hospital computer in the PICU parent waiting room, but someone had re-booted it and no one knew the login password. So it is currently, and indefinitely, locked up at the login screen? Once I plugged in my laptop tonight, the latch to open the lid was broken off and I couldn't get it open. So close to being able to retrieve my email...it almost sent me into a panic. Then, being so very resourceful, I used my earring to unlatch the computer. I think I may have a future as a either a burgular or a CIA agent!

Ned's first trial on the vapo-therm has gone wonderfully. He looks so much more peaceful now than he did the first time he was on it. I can really tell his muscles have built up and breathing is less strenuous for him. He still needs to step-down to the regular oxygen nasal cannula, but now our main issue is nutrition. Ned is loosing weight because he is unable to absorb very much of his feeds because his body is still emptying into the ostemy prior to going all the way through the digestive tract. So, we're planning on having a nutrition consult tomorrow, as well as, meeting with pediatric surgery to decide when to put the ostemy back in (our final surgery!!!) Personally, I would just rather go ahead and put the ostemy back in and move forward from that point because they are going to have to re-intubate him for the surgery. The weaning process shouldn't be as long, but we could be working on that and bottle feeding while gaining weight through the feeding tube? We'll see what Dr. Adamson (our surgeon) says tomorrow? Please pray that God will be in control of all decision-making to ensure that we stay on the course He has set for us. In the meantime, Ned and I are enjoying sitting around together and snuggling in the recliner!

I know I mentioned that the other day in the PICU was nuts.....actually, the entire latter part of the week was no picnic! I was talking with one of Ned's nurses who had been with a baby who had had a very difficult day. She made the comment that her child on Thursday may have been a tad bit more problematic than Ned's worst day when she was his nurse. I kinda laughed and said "surely not that bad", but several hours later, that other baby died. It wasn't really until that moment that I realized how close we had been to loosing Ned that day. I believe that God protected and sheltered me during that time. I knew things weren't good that day and that they were having a difficult time stabilizing him, but it hardly crossed my mind that they wouldn't be able to stabilize him or that he was verging on plummeting past the point of salvation? I am so thankful that I didn't understand then and that I was able to look past the immediate circumstances to the promises of God. It is in such reflection that I see God's hand guiding my life and I am overwhelmed at the protection we, as His children, are given in His grace!

As you continue to pray for Ned and his breathing and eating challenges (thank you, thank you, thank you), please also pray for Trent Hopper. Many of you know him, he is the son of Theresa Hopper (Mrs. Hopper the choir teacher for those of you who attended South School). He is at UNC hospitals battling colitis (not real certain on that spelling). He has been dealing with it for a year and they are praying for a healing to avoid surgery. Please add this to your prayer list and include his wife Chloe. They are still somewhat newlyweds and are facing a great deal of obstacles in their lives right now.

Thank you all for your continued support and prayers. Much love and many blessings to you all!

Betsy, Travis, Jack & Ned

Busy Days

2008-03-07T10:01:00.002-05:00

I first want to apologize for not posting for the past several days...I have come back to Chapel Hill without the power cord from my computer so I'm not as "wired" as normal. Travis is mailing it to me today so I should be back on schedule tomorrow. The plan was to put Ned on the high-flow nasal cannula yesterday (vapo-therm), but the PICU was so very busy that they didn't have time to watch him as closely as they would like. I was perfectly fine waiting. I am just so thankful to finally not be the kid who is requiring so much attention. There are a lot of really sick kids here right now and one baby didn't survive yesterday. The PICU is so extreme....things are either miraculously wonderful or overwhelmingly sad. As of right now, they are going to switch Ned over to the vapo-therm some time today. I am just praying that his body has gotten strong enough to hold that little left lung open now! Once he can maintain on the vapo-therm, they will step him down to a regular nasal cannula and then we can leave the intensive care unit. For me, that's a little bitter sweet. I'm ready to get home, but I have grown to really love the people who work on this unit and who have shown such love and compassion to my son and myself. What a fantastic blessing they have been to my life. I was actually kinda glad to get back up here this week.....I missed Ned and the hospital staff? How crazy is that?

Quick question, have you ever gone through a really ugly phase in your life. Like one day you look in the mirror and you're just not really happy with anything about yourself. You feel fat, your hair-do isn't suiting you, you're pale, etc. I've been in a place like that lately and the other night, I attempted to help myself a bit- you know, I used an emergency mask and some extra special moisturizers- cause that should fix 2 months worth of neglect? Anyway, when I was driving back to Chapel Hill, God showed me where I was ugly spiritually. I always tend to pay more attention to my outward appearance than my inner? The first day Ned moved from the NICU to PICU, he had that heart cath test. The surgeon told us we could wait in his room and he would come back there once it was over. Travis and I had stepped out for coffee and when we picked up the phone to get access back into the PICU, the lady on the phone told us to wait in the waiting room till Ned got back. I was very snippy with the woman and she did let us back into his room, but I spoke to her in a tone that wasn't kind at all. It wasn't so much what I said, but the tone in which I said it and the rage that was welling up in me as I was speaking to her. I'm still unsure who it was I spoke to that day, but after God showed me this the other day, I have attempted to apologize. I gave my apology to Deborah who typically answers the phone during the day. She has assured me that she doesn't think it was her, so I've just asked her to let me know if anyone mentions it so I can let them know how sorry and embarrassed I am for my behavior. She said not to worry about it, but I just let her know that God has called me to be better than that to others. Now I feel like if I confess it before all of you, I'm getting a little closer to truly apologizing? Thanks for being my ears!

Please just continue to pray for Ned today......God is working many miracles through his little life and I am just blessed to be a witness to it! Thank you all for enriching my life with your own testimonies of faith. I can't begin to express all my thankfulness to you all for all your love and support. The enormity of it consumes me daily and it sustains me!

Betsy, Travis, Jack & Ned

Spring Cleaning

2008-03-03T23:20:00.003-05:00

We have spent the past three days cleaning everything we own and moving into our house we have been renovating since August. Travis' mom and my mom have been staying with Ned in Chapel Hill- we are blessed to have such an extensive support system to allow us to keep our bases covered at all times. Ned has been doing wonderfullly. His feed are up to 22cc's per hour and the plan is for him to start taking several hours at a time off of the CPAP tomorrow and trying the nasal cannula again. They said this is a slower weaning process which they refer to as "sprints". I'm really hoping they go well, but I can't complain regardless because he has done so well! When I get anxious or discouraged, I just look back at the pictures when he was all but completely wrapped in wires and I am just so thankful, that's all I can focus on. Ned's chest x-rays are looking a little better each day- thank you all for all your prayers they are truly very evident each with each hurdle Ned surpasses!

I found it very perplexing today that we scrubbed everything we took into our house this weekend. Although most people clean thier possessions before moving into a new home, cleaing our stuff seemed so ironic when I thought back to how Travis first refered to the house as a "dump" we I mentioned that I thought it might be a good idea to remodel it? When I think about how that house has progressed, it has reminded me of how Jesus works in our lives. The first thing we did was completely gut the house. I mean we knocked down walls, stripped wiring, replaced plumbing- the works, but it was necessary for us to be able to rebuild and restructure the "dump" and transform it into a home. When God first starts working in our lives, he has to clean out the junk and trash in order to transform us into a new creation- the mustard tree.

What is very interesting about the parable of the mustard seeds (Mat 13:31-32) is that mustard trees do not exists. Mustard seeds should develop into a mustard plant which is basically a weed-like plant; however, in thae parable the mustard seeds grow to be trees in which birds of the air can find rest. In other words, through faith, we can be transformed into new creatures who offer rest and comfort to those who are lost. How cool is that!

Well, I must go to sleep now before I loose consciousness while typing. Thank you all for all your prayers. I let you know how he does on his sprints tomorrow!!!

Betsy, Travis, Jack & Ned

A Lesson in Patience

2008-03-01T19:29:00.003-05:00

There are fewer and fewer daily updates for which I am very grateful since such frequent changes were characteristic of a time when Ned was really unstable. Now we are experiencing slow and steady progress. For me, it is so difficult to see the other side and not be able to get there? Ned's lung looked a little better yesterday, (thank you for your prayers) and he has continued to do really well as far as his other stats! I don't think they'll contemplate re-intubating as long as he continues to be able to support his body from a pulmonary standpoint regardless of current concerns from the x-ray. Having said that, I'm still hopeful that his little lung will clear up and reinflate. It seems to me that if he can do so well with only one lung inflating, he should really be able to make some headway with two?

The past week has really been teaching me a lesson in patience (which by the way is a lesson I wasn't really seeking to learn). I remember when we were going back and forth with when to schedule Ned's heart surgery and Travis looked at me one day and said, "Well, we've been praying for patience." My stomach dropped. In a completely shocked tone, I asked, "have you been praying for pateince?" He confidently and proudly assured me that he had. Then Travis asked if I hadn't prayed for patience as well? I absolutely had not ever prayed for patience. When my Bible teacher told us one afternoon that when she started praying for patience, God allowed her to go through an experience to teach her patience. In her circumstance, her terminally ill father-in-law lived with them for years and she took care of him while he was physically deteriorating. That sounded like more than I was interested in enduring just for a little patience, so I decided then and there that I would never pray for patience. Now I realized that my dear husband had voiced a prayer that I was intentionally avoided and drug me into learing a lesson I had decided to bypass....marriage is a beautiful thing?! Travis laughed when I explained to him that I had tried to opt out on the whole patience deal. Both of us knowing that God will continue to work in your life regardless of your personal hang-ups and short-comings. I do believe I will learn patience during this experience and I am certain that my life will be blessed exponentially for having been held at bay for a period of my life.

Ned continues to improve a bit every day. He is up to 20cc per hour on his feeds and he is down to 25% oxygen (21% is room air) on the CPAP. We just have to get the breathing and eating down pat before we can go home. One amazing blessing is that Ned has never thrown up from eating. They expected him to have a difficult time digesting due to that fact that all of his digestive organs were misplaced at birth. Since they got his withdrawal symptoms under control, Ned hasn't thrown up one time! He may experirence more problems with that when he starts bottle feeding, but for the moment, he's doing great! I'm not sure if they are going to go ahead and schedule the bowel repair surgery while we're still up there or not.....it honestly hasn't been mentioned. In a way I'd like to come on home and in a way, I'd like to go ahead and get everything fixed? I'll just let that works itself out in God's timing. It's a little easier to hand things over to God and His schedule when you have no clue about the situation at hand. I mean, I may be more pushy and controlling if my child were dealing with issues I thought I could fix, but since I have know education or experience in the medical and surgical field, it makes it easier for me to trust God rather than relying on my own understanding.

Please continue to pray for little Ned. I look forward to the days of his life when all of you will be able to tell him how you knew and how you remember God working so clearly in his life. I believe each of you will be my children's memorial stones that will begin to build their foundation of faith in their lives. Thank you!

Betsy, Travis, Jack & Ned

Lots of Prayers Needed!!!

2008-02-28T11:26:00.002-05:00

Ned has been off of the vent for over 48 hours now which is great; however, his routine chest x-ray yesterday morning showed that his left lung (the small one) had collapsed a bit again. They decided to take him back off of the regular nasal cannula (oxygen only) and put him back on the CPAP (which supplies pressure and oxygen) to try to re-inflate the lung. If they can't get it re-inflated, they may have to put him back on the vent. The very good news is that he remained stable with the one good lung.....stats were great, but they just want the other lung working so he doesn't tire out too easily. This mornings x-ray didn't look any better- maybe a little worse, but because he is still stating well, they are going to give it some more time. Please pray that God will allow his little lung to open back up and funciton properly. He just has a more difficult time holding that lung open now that it has collapsed because there isn't a diaphram muscle on that side either? I am so praying that we don't have to go back on the vent, but, again, we'll just have to continue on this journey in whatever way or fashion God directs it.

It took exactly less that 24 hours to spoil my son.....honestly. I 'm not sure if there has ever been any research performed to determine such, but for Ned- 24 hours. After I held him most of the day yesterday, I stopped rocking to put him back in his crib around midnight and as soon as I stopped rocking, he started crying. I sat back down and rocked again- the crying immediately ceased! When I stopped rocking a second time- crying! Who can believe that he could have learned to enjoy something and cry for it so quickly? I am so thankful that he likes being rocked though. It gives me peace that I am now able to comfort him!

I appreciate everyone's continued prayers for litte Ned. His lungs are still small and currently compromised so he still needs those prayers for lung function and to prevent any infections from setting in. Your faithfulness to pray for my child is so greatly appreciate and has been a very humbling experience for me. God has been so faithful to answer those prayers in a very mighty and miraculous way. I find myself asking everyday, "Why Me God" and not in the way like why did you let this happen to our child. Now it's more like, why did you choose me for this experience? Why were we allowed to be the ones to have you work so miraculously in our lives? So many people go through life and never see God and know Him like we have been allowed to. I just wonder why we have been allowed to receive such blessings?

Love to you all!

Betsy, Travis, Jack & Ned

Breathing.....Oh Yeah!!

2008-02-27T08:46:00.003-05:00

Well, they extubated Ned yesterday morning at 8:00am and transitioned him to the CPAP which still provides a good bit of pressure support. He did extremely well and Travis and I both got to hold him for about 30 minutes. It was wonderful!! I don't think we were the only ones that enjoyed it- Ned's oxygenation stats were the absolute best for the day when he was being snuggled- it warmed my heart. I thought, that's how it is when God holds us during our struggles. Ned's body wasn't in any better physical condition while we were holding him. His struggle to breathe remained, but he found rest, peace and comfort in arms. That's exactly what it's like to go through a deep valley with the Lord. The struggle is the same, but your response is supernaturally different.

Around 2:00pm, they transitioned him from the CPAP to the high-flow nasal cannula better known around the PICU as Vapotherm (it is absolutely necessary that you learn to speak in acronymns if you're going to survive conversationally in the PICU)!! So far, so good! Ned has been off the vent now for over 24 hours. The magic number is the 48 hour mark when they will pronounce this wean off the vent sucessful, so we'll keep the prayers coming at least till then....just to be safe!

Otherwise, I have little to share today. It seems like on days when Ned has great tasks before him, I completely exhaust myself encouraging and supporting him. Last night, I felt like I had run a marathon, but I actually just sat at his bedside all day? He is working his little body to death to learn to breathe, but for some reason I feel like I have had some major part in it, which I havent....sympathy pains, I guess?

Below are some pictures from our highly eventful day. He is looking great, although he got an old man hair-do during his bath on Monday night. I think the wild man hair-do suits him better!

Thank you and love and blessing to you all!

Betsy, Travis, Jack & Ned

On the Brink of the Home Stretch!!

2008-02-25T23:16:00.004-05:00

The doctors performed a respiratory test on Ned this afternoon to get a better feel for how his lungs were progressing. I'm assuming they are feeling pretty good about his progress because they have scheduled a second attempt for extubation in the morning!!! My anxiety level is completely through the roof- I suppose it's because I know that this could really be it for us! If we can get Ned off the vent, we can soon move to the floor and start working on bottle feeding and getting him home! I have butterflies in my stomach like I'm gearing up for some big athletic competition or something. I don't think I'll be able to sleep tonight. Some of you better beware, I may be praying you out of your sleep again for extra assistance?

Ned is definitely ready for the vent tube to come out. He has been making extra-aggressive attempts to remove it himself all day! When I left, the nurses had "lovingly" pinned his arms to his bed sheets to prevent him from pulling the tube out himself. Ned didn't seem particularly thrilled with the new arrangement- He was extremely agitated and giving lots of the silent cries!

As I pulled out of the hospital, I let out some cries of my own...not all that silent though. As I prayed, I explained to God that it wasn't that I wasn't so very grateful and thankful for all He had done for and through my family and my son, it was just that my heart was broken to see him suffering so. If I could only bear his suffering myself, I would. The Lord showed me that in that same vein of love, he couldn't bear to watch his children suffer either, so He chose to take our suffering from us. His love for us makes so much more sense to me the more experiences I have as a parent. I realize that it would be easy to look at our situation now and think that we haven't been spared any suffering at all, in fact, quite the opposite, it may appear that God is heaping suffering on us? I have had times of real saddness and real fear, but I have never had moments of feeling lonely or abandoned or unloved by our Heavenly Father. In the darkest hours of my journey, I have always known that I have stood on the solid rock of Jesus and that though my path may seem uncertain, it would be lit by His glory and grace.

There are times when I post things here that I realize are difficult for some to grasp and digest. There are things that I post here that are difficult for me to say out loud (or virtually outloud as it would be). When I felt the Lord urging me to start sharing with others what He was doing in my life, that is why I resisted for so long. It was easy for me to share God's goodness in my Sunday School or Bible study groups, but not just with the general population. I'm certain that I appear to be a complete Jesus freak to some and all I can say is, I am. This is not a place I came to because I suddenly needed "religion" as I faced the uncertainty of a child with birth defects, this is a place to which I was brought because I sought to understand the Truth. All I want to say tonight is that all that I write about Jesus and how He sustains me is real. My attitude and ability to pleasantly endure hasn't been due to any of my own abilities....trust me! I have been slowing progressing to this point in my life where I could honestly share my feelings about my God outside of any religious atmosphere and the main thing I want to share is how very real it is because I never understood that.

I always prayed. Since I was saved at age 8, I prayed every night at bedtime. I gave God a complete list of everything I thought He should be taking care of that day, or at least in the near future. I never prayed for myself, that seemed selfish. It never crossed my mind to pray in a conversational tone. In my world, God's role was limited strictly to listening to my commands? How completely bizzarre does that sound? When I was in college, I believe it was my Sophmore year, I read a book. It wasn't a class assignment, just something I grabbed off the shelf at home on my way back to college one weekend- In His Steps by Charles Sheldon. That book changed my entire perception of how I should relate to God. In my bedroom, I got on my knees and prayed that God would begin to work in and through my life and that I might learn to listen to Him- a whole new concept for me!! My life began changing at that moment. It is certainly a never-ending progression, but I'm so thankful that it doesn't end, that there is no end to His goodness. It is in the infinite nature of God that I now find my fulfillment. Ten years ago, I would have kept a respectable distance from the person writing this blog. Now, I'm just confidently sharing what the Lord has done for me in hopes that others can find the peace and blessings I now know. Since I was 8, I would have said that I loved and believed in God. It has just been in more recent years that I can say, I know and trust Him.

Please continue to pray for Ned's extubation. All afternoon, I just prayed to God that the breath of the spirit of God that first gave him the ability to let out that cry at birth will give him an ability to steadily breathe tomorrow. That God will give his body the strength to support itself and that God will grant Ned a peaceful spirit during this adjustment. Thank you for all your prayers- from the bottom of my heart!!

Betsy, Travis, Jack & Ned

2008-02-24T23:53:00.004-05:00

After my weekend retreat home to spend time with the family, I returned to find Ned in a little onesie! It really isn't an indication of any particular progress; however, it just seemed so normal for my son to wear some clothes. He has been lying around in a diaper for a month so a shirt was just another tiny step in the direction of doing what other babies do....it was a beautiful site!

I stopped by to visit April and her husband Russell following their visit to CHOP last week. They received an almost identical prognosis to what we were told to expect with Ned. At this point, they are just trying to decide where to deliver and finding their comfort zone, or some semblance of it. I remember when Ned was first diagnosed and I kept telling God, "I know I'm going to have to put him in your hands, but I just need to exhaust all my resources first before I can let him go." All of that is just part of the process of faith.

I think most people think that faith is some spiritual sense that is miraculously allotted to some individuals more than others. Faith is basically nothing more than an intentional choice. There is nothing superhuman about it. Faith actually requires humans to be more submissive and obedient. Faith is built during hard times, struggles and difficulties when you choose to trust and follow Jesus in the midst of darkness. Although you can't see a light at the end of the tunnel and you aren't given any certainties regarding the outcome, you willingly relinquish your life into His hands. Such steps of faith are never easy, not for anyone. Hebrews 11:1 says: "NOW FAITH is the assurance (the confirmation, the title deed) of the things [we] hope for, being the proof of things [we] do not see and the conviction of their reality [faith perceiving as real fact what is not revealed to the senses]. "

There were days when I was pregnant with Ned that my faith was very weak and fragile. I was almost embarrassed that I couldn't hold on to the promises of God any better than I could. There were days when my faith was so weak that I was overcome by unspeakable thoughts all day. hHey were so intense and upsetting, I never mentioned it to anyone, not because I wanted to appear more faithful and self-righteous, but I just couldn't bring myself to life my thoughts into words. There were days on my way home from work, I would find myself consumed with the potential that Ned may not be able to survive. I gave thought to his funeral or graveside service, burial clothes, music, speakers, etc. I never even mentioned these things to Travis. Like I said, faith is a choice. It is actually a series of choices which lead you into a deeper relationship with the Father. I hope to be able to continue choosing to follow God and accept the blessings He has in store for me and my family. I was thinking about the Hebrews and how God had given saved them so many times, yet when they got to the edge of the promised land, they were too afraid of the giants to go in and claim it. I hope that with as many miracles as God has shown me and bestowed upon my family, I will always be able to trust Him and follow him!

When I was pregnant, there was a song that I would play for and sing to Ned almost every day. It is by Big Tent Revival (wouldn't that make a great t-shirt?) and it was called Choose Life. While I sang it to him, I meant for him to take it literally, but as for me, it is a choice I must make daily so that I can recieve the life He has in store for me, I want to choose to live in my promised land!

Choose Life, that you might live
The life that he gives, He gives you forever;
Choose life, for the way that is true
and the one who loves you, He loves you for ever;
Choose Life

We're still weaning off the vent slowly, but surely. Our two main, remaining prayer requests are breathing and eating. We need him to take about 12cc's per hour on the feeds before we can stop the TPN and of course we need him to be extubated and stable. Please keep these two issues in your prayers. I appreciate them all!!

Love,
Besty, Travis, Jack & Ned

Peace in the Baby Steps

2008-02-21T23:49:00.004-05:00

Today was a slightly uneventful day for little Ned. He really needed the rest after yesterday though! I think his body is finally getting acclaimated to the methadone (the oral narcotic) so they started weaning back off the morphine again today around 5:00pm. He began having withdrawal reactions around 8:00, but they weren't as severe as yesterday's. Today, he just spiked a little fever and had increased heart rate. The doctors completely attribute that to the change in the medications, but I believe it was an answer to a very specific prayer. By the time I left aroung 11:00, he was doing much better and had been resting peacefully for a couple hours. They are hoping to turn off his morphine tomorrow morning so tomorrow may be a bit of a rough day for him, but at least it will be behind us....praise God!!! Another praise is that they were fearing that he may be getting an infection with the onset of the fever, but his white blood count was lower than it was this morning, so that pretty much ruled that out!!!!!

Ned went on a field trip today and had a CT scan of his chest. The great news is that everything still looks completely in order from his hernia repair surgery. They were wanting to look at his lungs because his left lung appeared to have some fluid build up. Once they performed the scan, what that actually found was that his left lung was partially collapsed. I know that sounds like a severe incident, but they seemed to prefer it over a fluid problem. The doctors said they would adjust his vent settings to reinflate his lung and give it some extra support for the next couple of days. It is likely that the collapse was caused by his breathing tube being too far down in his lung which was causing some agitation. Because Ned doesn't have a diaphram on that side, if his breathing becomes too labored due to any extra burden, he just doesn't have the muscle support on that side to carry the slack...hence the collapse. I believe a couple days on the new vent settings should correct the left lung, but they'll watch for progress on his daily morning chest x-rays.

The last issue for the day is that Ned is showing some signs of some liver damage. It isn't anything serious, but he's looking a little yellowish. In fact, his nurse tongiht was referring to him as her little oompah loompah (so not sure of the spelling)! The damage is coming from him always receiving all of his nutrition intraveneously from what they call TPN which is basically gatorade in bag. The doctors aren't worried about it, but they woud like to get him switched over to breast milk as soon as possible. Having said that, they are most likely going to trade his feeding tube out tomorrow for an ND tube which will feed past his stomach further into the digestive track, to allieviate stress on stomach function and to reduce spit ups and reflux issues. They don't want him spitting up very often for fear that it will aspirate into his lungs and potentially cause something dangerous for him like pneumonia. It will be such a blessing to have him on normal, digested nutrition because it will help with healing all around.

I have shared so much medical information tonight, I have gotten too sleepy to type what God has been teaching me the past couple days. I'll share first thing in the morning, but I find when I keep typing once I've past the point of holding my eyes open, it makes little sense in the morning when I review it. So, I know God wants me to share everything that He teaches me during this time so that He can be truly glorified, so I'll let you know what I have been learning about pride and being refined in the morning.

Thank you for your continued prayers for my son. The answered prayers are evident daily and I praise God everytime one is answered!! If you get a chance, please review the blog for Baby Seth. His mother, April, recently found out he was diagnosed with CDH. She is heading to CHOP tomorrow for a complete fetal diagnosis. I know what a dark road she is going to travel and she knows it all to well herself. April lost her 2-year-old daughter in 2006 to a diseased that damaged her lungs. Please keep her and her family in your prayers! Thank you all so much! You are so loved for your faithfulness!

Betsy, Travis, Jack & Ned

Little delays

2008-02-21T00:28:00.000-05:00

We have had some problems today that prevented Ned from being weaned from the vent and it may extend extubation for several days. Since birth, Ned has been on a healthy, continuous dose of morphine. In order to leave the intensive care unit, Ned has to be off the vent and off the narcotics drips. They have been slowing reducing the morphine over the past week, but apparently we hit his threshold today because he was completely unable to endure that last reduction. As a result, he has had several withdrawal attacks today: shaking, sweating, and rapid heart rate.....just pitifully agitated and mad! So the game plan is to give him two other narcotics, which are administered orally, in pretty high doses. Once his body has become addicted to those drugs, we'll slowly try to pull the morphine away assuming he won't notice as much or that we can reduce his withdrawal symptoms by pumping him up on the other medications? I know it doesn't sound like a very ethical plan, but, we can take the oral medications home with us and wean him off over a much longer time frame. Anytime they say it's something we can do at home, I jump all over it. Please keep little Ned in your prayers tonight, it is very difficult to see such a small child going through drug withdrawal. My main source of solace is that he won't ever remember this....just I will!!

I have known many people recently to be experiencing addictions or family members with addicitons. As I watched Ned today, I thought that addicitons really disrupt everything. They disrupted the only plan of a 1 month-old baby and they disrupt families, careers, dreams, hopes, friendships...they ruin lives. And while it is so easy to blame the addict, as I watched Ned today, he had lost complete control to the morphine. His body wanted something it doesn't need so badly it was almost as if it spoke for itself. While Ned's drug use wasn't a choice he made of his own accord, I just think once you've become addicted, how you got there means very little, but realizing how far you've got to go to get clean appears as a long road often paved with guilt. My heart hurts for those whose lives have been completely disrupted by addictions. I've always wished there was an easier way for people to clean up, but since they aren't offering any great solutions for my infant, I think this is it.

That's all for tonight....basically just a very tired rant on addiction as it has been on my mind all day- my thoughts were probably much more clear and concise before midnight came and went! I'm just loving and praying for my little addict tonight.....I hoping this will be the last time he ever experiments with drugs!

"Historical": More like hysterical!!

2008-02-20T00:13:00.008-05:00

I completely forgot to share yesterday that while a new surgeon was evaluating Ned's wound from the CDH repair on Saturday, he called him "historical". I found this quite an odd statement about newborn child, so I prodded a bit. Dr. Duncan (the surgeon whom I had never met) went on to tell me that Ned is only the second child in the history of the world (very dramatic) to have both the CDH and the heart coarctation and survive without having to go on ECMO! For a breif moment I was beaming with pride, then he said, "I'm really hoping that this kid survives so I can submit an article on his case to the medical journals". Yes, that's correct, he said that his book report hinged on Ned's survival, that's why he was hoping Ned could pull through. While I could have been offended, we have had too many blessings to be petty at this point, so, of course, inappropriate laughter was my response. I just agreed with ole Dr. Duncan and said, "well, I'm hoping he survivies too, but not so much due to my interest in your paper." The most hilarious part of the whole conversation is that Dr. Duncan seemed somewhat offended that I wasn't as taken with his paper and he thought I should be....how funny is that? On a serious note, Dr. Duncan also said that if we had delivered at many other hospitals, they may have refused to perform the repair surgeries on Ned assuming that his chances for survial weren't strong enough for the risk or they would have performed the hernia repair first. Having that knowledge just confirmed to me how God had been leading and guiding us from the very beginning. He always knew where we would be best to deliver and He led us to exactly where we needed to be! How thankful am I that God loves us and lights the path beneath our feet!

Ned and I had a great day today. Not much changes for him, but I finally got to clip his fingernails. They were beginning to look dangerous! I'm unsure what maternal duties I can perform while Ned is here, so I wait for the nurses to give me the go ahead on everything. I am also starting to know Ned. Now that he is waking up more, I am able to read him and know his moods. I can tell when he is seeming uncomfortable and today, I could actually feel with my hand when he had some rattling in his chest and needed to be suctioned. Although all the doctors can feel and make that same determination, I typically have such dulled senses that I perceive this ability almost like paranormal 6th sense! I know it's really not that special, but I'm still glad to be able to assess his condition...it makes me feel more comfortable about when we take him home!

I think my little man enjoyed being held yesterday. This afternoon when I was holding his little head in my hands, he pulled to his side a bit by crossing his right arm across his body in my direction. I'm sure he was reaching to be picked up again! I can't wait until I can comply with his request!

God has been so good to give me peace and comfort. Even as we have taken some steps back with the vent and we are always vigilant for infections, I have been able to remain on the mountain top! I remember telling God that I would follow Him through the deepest, darkest valleys, but I was believing that He was going to bring us out on the mountaintop and when He did, I would sing His praises. If there is anything about this journey that is amazing, it is all God. His grace and mercy have carried us through a difficult time and taught us ( in a very real sense) that God is capable of calming all storms.

I remember the day I was on my way home from Shelby when Ned was diagnosed with CDH. There was a car in front on my on Hwy 150 with a bumper sticker that simply said, "The Power of God." I was praying that God would display his power to me and He has certainly displayed magnificent power during the past several months in my life! I am just so thankful that he allowed me to have this experience. When it's all said and done, my faith, my foundation, and my family will be strengthened because of the blessings we have expereienced during this trial. I think now that is how Paul came to be thankful for his sufferings.

My first view of the scar from the heart surgery....I'm completely impressed!

Love to you all!
Betsy, Travis, Jack & Ned

**Please continue praying for lung and heart health and a successful extubation next time around!

Dr. Stewert calls me: Punxsutawney Ned

2008-02-18T23:53:00.006-05:00

Well Folks, He poked his head out free and clear of the vent for about three hours, but it looks like 6 more weeks of winter! Just kidding, it shouldn't be that long? They took Ned completely off the vent this afternoon and he did well for a couple hours, but his breathing just became too labored for him and they had to re-intubate. It was the most wonderful site to see the entirety of his beautiful face!! I thought I had an idea of what he looked like until I finally saw him...then I realized the piecemealed image in my brain was somewhat skewed (and hardly did him justice). They'll give him a couple more days on the vent which is currently working to train and build-up his muscles to teach his body to breath properly. The next time they extubate, I think they're going to try the CPAP before the nasal canula (shown above) which offers a little more pressure support.

More good news:

They finally let me hold my little punkin for the first time today!!! It was a quick visit as they were preparing the medications and equipment to re-intubate him, but after 4-weeks of sitting beside him, wishing I could comfort him, it was that wonderfully familiar kind of feeling like coming home to your own bed after being gone for too long. After I spent Sunday with Jack, I wondered if I would be able to build that same kind of relationship with Ned. (I couldn't ask for better interaction with a 3-year-old than I enjoy with Jack...I genuinely enjoy his company) After I held Ned today

and we had a little bonding time, I knew we'd clicked! It was a very surreal yet natural feeling. I don't believe I've ever shared this, but when I was pregnant with Ned, my most frequent dream was that immediately following birth, he and I could have complete sentence, verbal discussions (he wouldn't speak for anyone else- they thought I was crazy). While holding him today, I felt so connected with him, I wouldn't have been completely caught off guard if he had struck up a conversation.

Such blessings we have received! I am learning that this is how God wants us to live....not just how He wants us to survive this trial. Today, Travis received unofficial word that his company is going to be announcing a layoff. Unless there is some exclusion given to his group, he will most defininely be affected. While driving back, I was praying and wondering, "God, when is all this unrest going to end for our family?" He answered, "this is your new lifestyle." I'll have to say, I didn't take to it at first. He reminded me of his life-long relationship with Abraham and how it all began with Abraham leaving out from his comfort zone, with no direction, at the single command of God. It was never God's character to ask someone to follow Him a single time, reward them, and then abandon them. He seeks for His children to walk with him daily (all day, every day). Abraham had many trials and many blessings, but they were over the course of his entire life. Now that I have come to a place where I can trust Him with my children, it was much easier to hand Travis' job over to Him. I said I would ALWAYS trust Him with everything and I can't treat the miracles He has bestowed upon Ned as a one-time gimmic....It's His nature!

I am continuing to pray that Ned's little body will find the strength to maintain on its own and that he won't have to endure much more struggle before reaching a state of autonomy. I pray that he will be able to wean off of the narcotic medications without having to endure withdrawal symptoms. If you will also keep Travis' job situation in mind. I believe that God will show him the direction in which he wants him to go; however, I know he is feeling unrest about the uncertainty of it at the moment. Thank you all for your continued prayers.

Also, for those of you who link to other blogs, a note of praise.....Livvy is now at home!!!! Praise and Thanksgivng to God!

Love you all-

Betsy, Travis, Jack & Ned

They Said the "H" Word

2008-02-15T23:34:00.002-05:00

Ned's daily progress is nothing short of amazing! I mean, the fact that he has come out of heart surgery and immediately starting weaning of all medicaitons and the vent without hitting one tiny bump in the road is nothing short of miraculous. For me, it is like watching the parting of the red sea. I mean, I sit there watching them make all these changes and think, "this may be the step where Ned jumps ship and refuses to take anymore advances at this time", but, so far, that has never happened. I imagine it is the same excited, apprehension the Hebrews felt as they walked between the walls of the red sea....fearful to believe they could make it quickly to the other side.

They gave him his first food today, just a little pedia-lite- he is accepting it well and we even had a poop! I would never have thought that body secretions could have made me so happy, as I have a very weak stomach and am not the least bit entertained by body functions, but it was a glorious moment!

For those of you who don't know, the "H" word is Home. That's what I said, our doctor used the "H" word today. He is still far from ready to put a timeframe on it, but he did say we were making progress and moving in that direction...toward home, that is....I just like to keep saying it! Don't know if I have mentioned it, but Ned's name in the PICU is "Rockstar"! I am so proud now every time the doctors come in, they tell me how miraculous he is. All I can say is "I know"...and reiterate how thankful we are!

I was just telling Ned tonight how proud I was of him for listening to all I had told him prior to his birth. I spoke with him often, and the main point I attempted to drill into the subconscious of the child in my stomach was that he was blessed because he was getting the opportunity to learn at a very early age what some adults never catch onto.....he would learn how to completely trust in Jesus and rest in His arms. Ned would have to allow himself to be carried from the very beginning and I asked him not to fight against it, but just to rest in God's abilities. These were the conversations I had in public with my very protruding stomach as I walked around Lowe's grabbing up items needed to finisih the construction on the house. I'm sure the gentleman working in the hardware isle thought I was not only completely indecisive, but also somewhat off my rocker?

It's amazing how attentive children are to the calling of the Holy Spirit. When I prayed that others would wake and pray for Ned when I was too weary, there were children who were awoken by His urging. Isn't that both amazing and shameful. We as adults fill our minds and hearts with so many other things, that we miss what our toddlers clearly hear because their lives are still so simplified. No wonder Jesus rebuked the disciples for sending the children away and called them unto himself. They were capable of truly "hearing" the message.

I don't know if anyone else noticed, but my cousin's daughter was having a conversation with her mother on Wednesday about Ned's heart surgery. Her mother was trying to explain why the doctors needed to correct Ned's heart. Her goal was to simplify the anatomy lesson to the level of a 5-year-old so she could gain a basic understaing of heart function. After she had given her daughter the best explanation she could muster, she hesitantly asked if she had understood why the heart was so important. Without hesitating, and without any prior discussion from this perspective, her daughter answered, "yes, because that is where God lives." As profound as that is in its own innocent truth, the enormaty of that statement is increased when you know that just a day before, I stood over Ned's bed telling him not to worry- of course, this pep talk was mainly aimed at myself- because God was the great healer and if He had a specialty, He was most certainly a heart specialist. "Besides, I told him, God's home is in your heart and he won't settle for anything less that perfection."

Good Night and God bless you all! I love you all dearly!

Betsy, Travis, Jack & Ned

On the Road

2008-02-14T20:06:00.002-05:00

Just a quick update.... Betsy and I left the hospital this evening to eat dinner, run to Wal-Mart and let the nurses do shift change, so we're on our way back to the hospital now. Ned's progress is still remarkable today, one day post surgery. The doctors and nurses in the PICU are still fighting over who gets to be with him everyday, and they are actually calling him the PICU mascot. They took out his chest tube (to empty the chest cavity of any fluids, air, etc.) this afternoon, and the surgical team actually wanted to start feeding him through the stomach tube today, but the PICU doctors said they wanted to wait until tomorrow. They are still working on weining him off the vent, and getting his blood pressures down (rather than up) as his heart is now able to pump blood to his body a lot more freely (not having to fight the coarc). His color is so much better right now as well.

I just keep thinking about how before surgery, the surgeon was going over what was going to be done, and all the rishs involved, from cardiac arrest on the OR table, to his lungs collapsing, to permanent paralysis of his lower body, etc. Betsy and I finally just told him that we have dwelled on statistics and risk numbers for so long (CHOP giving him 30% survival rates after birth, 80% chances of going on ECMO heart/lung bypass machine, etc.), that we really didn't need to hear about the risks anymore, that we had put Ned in God's hands a long time ago, and we were trusting Him through this. The surgeon actually seem relieved that we said this, as I think it was hard for him to put a percentage on the risks in the first place. As we have stated before, the surgeon is still checking in today and still as excited as he was yesterday about the outcome of the surgery. It is just so evident by looking at Ned and even at all the monitors and medications (which are a good bit fewer) that God definately had his mighty hand in that OR and in that hospital.

We'll post again later tonight or tomorrow, but for now I just want to thank you all for your prayers on our behalf. Betsy wrote earlier about how she woke up praying on Tuesday night, and just could not put together a cohesive sentence at the time, and that she prayed for God to wake people up to pray on our behalf. It is SO AMAZING how so many people have emailed us to tell us that actually did wake up to pray during that night. We have heard so many people telling us that they prayed, anywhere from midnight to 4:30am. I want to thank you all so much from the bottom of my heart for your thoughts and prayers during all this.

Well, Betsy is telling me to stop typing so we can head back over to UNCH. I'm sure she'll continue with an update later.

Love you all.

In Christ,

Travis, Betsy, Jack & Ned

How precious is the view from the Mountain Top

2008-02-13T23:16:00.002-05:00

This has absolutely, hands-down, been the greatest day of my entire life!! I wish I could truely express the overwhelming feelings of thankfulness, joy, peace, relief, excitement, anticipation, and fulfillment that I have experienced today. If I weren't so old and out-of-shape, I could have turned cartwheels down the PICU hall all afternoon.

As I mentioned earlier, Dr. Stewert was thrilled with the outcome of the surgery. While, I could tell he was wanting to remain "cautiously optimistic", as any professional surgeon would, he couldn't help but looking like a kid on Christmas morning as he peered over Ned's bed for hours after the surgery. He just kept repeating (mostly to himself I think), this is "un-freaking-believeable". He also told me that the outcome was more than he would have dared to even ask for. I later thought, "not me, if you had any idea what all I had asked of God lately, this outcome may not shock you at all?" All I have been able to do all day is drop my head and say, "thank you, thank you, thank you, thank you....a million times over".

We had planned on staying in the hospital tonight becuase we expected his stats to be really unstable following such an invasive surgery on such an already tenuous child. The medical staff had prepared us for what they truely believed would be a really rocky recovery, if recovery was even feasible. We have really seen today that the staff had reached a consensus that Ned's chances of coming through the surgery without major complications were slim-to-none, so it was basically a party in our room all afternoon. However, his little stats have not only remained stable since the moment he was wheeled back in from the OR, but they are better than they have ever been and they are already working on weaning him off of the conventional vent. As usual, God provides over and above what we need and desire. All I was asking was that he be able to survive the surgery, but God has allowed Ned to be the all-star, super-hero child of the PICU. We may still have some battles to face with weaning, blood pressures, eating, and the last bowel surgery, but we feel like we have cleared the top of the mountain. Not so much even because Ned is doing so much better, but because when we continued to cling to and trust in God, He took us to heights that nobody thought were attainable. We have been blessed beyond measure and in a miraculous nature....today we have been able to rest on the mountain top in the arms of our Savior that carried us through our darkest hours!!

I wish I could begin to thank you all for all your prayers and do some justice to the gratitude I feel in my heart to each and every one of you. You will never know (until we all get to heaven), how your prayers affected our lives and the life of our child. In fact, last night, I couldn't sleep, but was too tired to pray so I asked God to wake up others to pray for me. If any of you were awakened....that's my fault? If at anytime I can ever repay you for your love and kindness, please know that I am so ready and willing to return and give back the blessings I have recieved.

When I got to talk to little Ned today, I told him, "you have already built such a living legacy." I can't wait to teach him about how the Lord used his life to touch the lives of others in the name of Christ and for him to really be able to take in all the goodness that was bestowed on his little life. I am always trying to teach my Sunday School kids about what I call foundations of faith. These are the times in your life when you knew, that you knew, more than anything in the world, that there was a real and personal God doing a work in your life. These foundations of faith are there for you to lean on in times of struggle so you don't crumble under the pressures. I can look back now and see how God was preparing Travis and I for this journey for at least all most 3 years. I am so thankful for the work He has done in and through our family. I am thankful that he reveals Himself to us before He takes us through difficulties so we know we can lean on the power of His presence.

Last thought for the night....I looked at his little body this afternoon, so pink now, and I thought to myself, "you were labled a reject, not worth saving. Doctors told me to scrap you and start over. But I knew then that you were a blessing in disguise and you were so worth saving!" That's how we all are. We're all a bunch of labeled rejects, nothing to offer, and not worth saving. But God looked upon us and loved us in His fatherly way and knew how beautiful we could be (they way He created us to be). And He did what any loving father would do, He gave all that He had to ensure our safety and security though salvation. It makes so much sense when it's put into perspective doesn't it?

Love you all!

Betsy, Travis, Jack & Ned

Surgery is a Success!!

2008-02-13T12:10:00.003-05:00

Dr. Stewert just came in to let us know that the surgery went as good as he could have possibly expected. He acted somewhat surprised and extremely relieved....as was I. I haven't seen Ned yet, but all I know is that his heart is fixed, he is almost certainly out of the woods for any severe complications with the surgery and they said his left lung (the small one) is looking significantly larger than expected. I have never been so certain that God has been in control of this from the beginning. I couldn't ever have guess how He would work this out, but I just can't help but going back to the day Ned was diagnosed and God said to me..."Betsy, are you going to trust me?". For sure now, without hesitation, my response is ALWAYS!!

I'll update with more details later....I'm on the hospital computer?

Love you all. Your prayers and faithfulness have brought us through the darkest time and I am forever grateful and blessed for all you have given us.

Betsy, Travis, Jack & Ned

Not Exactly Chrisftmas Eve!!

2008-02-12T23:42:00.000-05:00

Although the correction of Ned's heart will be a huge blessing, it has been very difficult for me to approach tomorrow from a standpoint of anticipation. I would like to say that I am excited about getting through the heart repair, but the truth is that I am completely terrifed of the procedure. There are moments when I can come to a point of peace, but I can't stay there. I think it is because there are so many ups and downs and uncertainties right now that once I come to level ground, it is unexpectedly pulled out from under me again.

Today began on a great note. We met with the cardiac surgeon, Dr. Stewert, and he was walking us through the details of the surgery and giving us statistics on what we can expect for potential outcomes. I know many of you are wondering how those statistics play in Ned's favor, but I'm just not willing to put some of the potential poor outcomes into the air. The upshot is that it is most likely that he will return from surgery in much the same condition he is in currently with the state of his lungs and working through blood pressure issues. Then there are extreme cases from basically complete healing to some other really devastating outcomes. As we told Dr. Stewert today, we have spent too much of our time and energy caught up in the statistics we have been given regarding Ned's survival. We made the decision many months ago to ignore those statistics and BELIEVE that God was greater than that, that He was bigger than all of Ned's birth defects. We placed Ned in the hands of God and that is where he remains. It is difficult for me to leave him there. I want to be able to meet his needs, but I find myself at a place of completely inability.....as weak as I have ever felt. Almost too weak to lift up real and coherent prayers.

I don't know if it was because Ned's day wasn't all that great today or because I had the impending surgery looming over my head, but it was extremely difficult for me to leave his little bedside tonight. We had blood pressure issues all day, but seemed to have gotten the under control several hours before we left. Once that was cleared up, I was feeling pretty steady until our nurse told me that she hoped that Ned had a good night because they wanted me to be able to hold him in the morning prior to his surgery!?! While I have longed for and daydreamed about the moment I would first get to snuggle my sweet son in my arms, something about the urgency of needing to get that in prior to surgery has left me completely unnerved. I know it wasn't their intention at all, but I just felt like they were saying, "we want you to be able to hold your child before his surgery....it may be your only opportunity."

Ned will leave at 7:10 in the morning for his coarctation repair. The entire procedure should take 2-3 hours; however, the actual heart repair part shouldn't last more than 20 minutes. Please pray for little Ned tonight (if anyone is still up) and in the morning. I am just praying that God has already ordained and prepared this situation so that He can be glorified. I am praying for the doctors and nurses in his OR....that they will be given discernment by the Holy Spirit and that God will be in complete control of them as his surgery takes place. I am just praying the the power of God will be fully displayed tomorrow in the way we all respond during the surgery and the way Ned responds to the surgery. I am also praying that once we are past this, that I will always be aware of how God spared my sweet son and that it will motivate me to always be certain that I am teaching him how to live his life serving God. I have a much better understanding of how Hannah was able to pray to God that if she could only have a child, she would give him back to God. While, I don't have intentions of dropping Ned off at a temple, I do understand that Ned will have been saved for a purpose and that it is my repsonsiblity to ensure that he is groomed and prepared to meet his task.

Thank you all for all your prayers. Please keep them coming! Could you also pray for my friend Tricia today...her daughter, Cadenne, is linked on my blog. Tricia had a really difficult day in the hopsital. Cadenne is fine, but working your way through hospital changes can be really difficult on a mother and sometimes it is overwhelming when you can't mother your own child. She and her family have been extremely faithful to pray for us and I am asking that you lift her up on a day when she is struggling as well.

I love you all dearly!

Betsy, Travis, Jack & Ned

Keeping us on our toes!

2008-02-11T12:57:00.000-05:00

Quick change...surgery is now on for Wednesday?! Praise God, there have been no setbacks that have caused the doctors to delay the surgery date. They have just decided to give him another day on the conventional vent and some more time to come off some more of the medications. Thankfully, that gives us more time to get "prayed up", as I have often heard the term used. It basically means to pray to a point of spiritual rest and comfort. To me, it is less of a saying and more of a state of being. It's where we should all live....prayed up!

I want to go ahead and share something God has laid on my heart this morning. I have received several emails within the past several days from people who are struggling with other issues in their lives. Most of the emails begin in a very apologetic tone as if I am being bothered by their request for prayer. Others have even avoided ever sharing with me what it is that is weighing so heavily on them for fear of over-burdening me. While I so appreciate everyone being so sensative and compassionate towards me, I don't want this to become a period in my life that is about me and what I need. While everyone feels a sense that all my attention should be focused on Ned, I want God to continue to be able to use me. After I say this, you may feel the urge to contact DSS, but I hope you'll hang with me a few moments while I explain. I don't need to focus on Ned right now. In fact, there is no time in my life when I need to focus on my children. I have looked back on it this morning and as best as I can find, there is no where in God's word where He directs us to focus on anything other than Him. I am looking to Him knowing that He holds my children. It isn't that I wouldn't love to fix Ned, all on my own, right now; but, that isn't a possibility for me. On a smaller scale, I am unable to cure Jack's cold, force kindness into his heart, make him desire to share his toys or to treat everyone with the same love he shows me? No matter how much I focused my attention on these efforts, I could never be assured that my best attempts would prove successful. How liberating that all I have to do is focus on Jesus and trust my children into his care. Before we came to Chapel Hill, Travis and I prayed that if the Lord wanted to use us in any way while we were here, that we would be sensative to the calling of the Holy Spirit and that we would find our way through our fears to be obedient. We want those oppotunities so that the blessing of the Lord can really continue to flow as our faith is being both tested and multiplied.

I am thankful for the prayer requests that I receive. I believe that as people of God we should rejoice in praying for others. I love knowing where people are in their lives and their spiritual growth and what their struggles are at the moment. I enjoy praying for others because I enjoy seeing God answer those prayers and work in the lives of others. That's how our lives become blessed. I think this is a difficult place to reach in our lives because we do think we can control everything and that our families are our burdens and our responsibility to protect, but there is actually little truth in that. We are all children of God and He holds us all in His righteous right hand!

I'll keep everyone posted on the surgery. In the meantime, the words of this old hymn have been a favorite for Ned and me lately. It so speaks to where we are:

Turn Your eyes upon Jesus,
Look full in His wonderful face,
And the things of the world will grow strangely dim,
In the Light of His glory and grace!

Amen!!!

Surgery is a Go!

2008-02-10T23:34:00.000-05:00

As it goes in the world of critical care for children, we have very quickly (and so far very successfully) weaned little Ned off of the jet vent back to the conventional vent today!! The doctors would like him to remain stable on the conventional vent for 24 hours prior to the heart surgery to fix the coarctation, so as it stands at the moment, Ned's surgery is a go for Tuesday! While the medical staff seems extremely excited about his progress and their ability to move forward, I am feeling apprehension about sending my 3-week-old son off to yet another risky surgery? Please pray that I will again be able to find a place of peace and comfort in completely surrendering my son into the hand of the Father. When we've been through a time of stability, I find it difficult to face going back to the rocky places (which I fully expect to have some rough patches after surgery) even though I am being led and protected by the good shepherd. In the times of stability, I am lured into believing that I am able to maintain some semblance of control over our situation. However, there is no truth in that emotion and I am fully aware that striving to control my life doesn't offer near the peace and blessing that resting in total surrender does.

There have been very few medical changes over the weekend other than the vent change. Ned received a new breathing tube when they changed his vent because his was leaking air because the tube was too small. The doctors beleive making that change, made it much easier for him to adjust to and accept the vent swap. They also put a very small tube in his side on Saturday to let out some air that had gotten between the exterior of his left lung and his side (a side effect of the jet vent). I think they are planning on leaving that in a couple of days and then removing it although on the last x-ray, the patch of air is already completely gone!

With Ned's surgery coming up this week and the thoughts of so many people praying for his healing, I have been consumed with thoughts concerning intercessory prayer. The reason it has been so on my mind is that I have always had a difficult time with the whole concept. I'll explain...I just always believed that God had set forth a plan for each of our lives and that prayers that made attempts at changing his mind seemed pointless. Most of this belief was confirmed after Patrick, my brother, died in a car accident. I just felt certain that had I woken up that night and prayed for his safety, his fate would have been the same. And I still completely believe that. So, do I believe that prayers lifted up for Ned may impress God to allow him to be healed? Yes. Here is what I have concluded after some study. Intercessory prayer is prayer that is completely on behalf of others. Prayers that, if answered, bring nothing to the faithful saint offering the prayer on the behalf of someone else. If I had woken up and prayed for Patrick that night, it wouldn't have been for his benefit, it would have been for mine. So many sentences in that prayer would have begun with "I". "I" need Patrick here, "I" don't know what "I" would do if something happened to him, ect. While Patrick would have been the subject of my prayer, the blessing would have been meant for myself. That's not what intercessory prayer is..... In Exodus 32, when Moses returned from Mt. Sinai where he received the law of the Israelites from the Lord, he found them worshipping the golden calf, God was angry with them and told Moses He intended on destroying them. Moses interceeded on their behalf and pleaded with God not to destroy them. He approached God by reciting God's word and His promises to Abraham and his descendents. By communicating with God in this manner, the Israelites were spared. So, I have learned a great deal about and come to understand that as Jesus is interceeding with God on our behalf for our sins, we can certainly intercede on the behalf of others so long as our intentions and motives are pure.

I also wanted to share something that jumped out at me the other day. I was reading in Matthew chapter 14....one of my favorite passages. The more I read about when Jesus walked on the water, the more I learn from it!! Anyway, I have for some time noticed that Jesus "made the disciples get into the board and go on ahead of Him". In other words, He pushed them out into the middle of the lake into what He knew was going to be a raging storm. Although Jesus knew the storm was coming and His disciples were going to be in danger, Jesus took the time to get alone with the Father and pray. But what I most most struck by this time is that not only did Jesus wait until the 4th watch to save the disciples, even in the midst of their panic, Jesus walked toward them. I know, for me, at times when I feel like I'm in the midst of a terrible storm and I'm feeling afraid, I want Jesus to run to me, swoop me up and end the struggle immediately. But, my ways are not his ways, his timing allows us to reach that place of complete surrender because we have exhausted all of our own resources. I'm sure that as that storm picked up, those disciples had tried every effort known on this Earth to get that boat to shore. They had probably attempted to row in while dumping buckets of water back out over the edge. By the time Jesus came to them "walking" on the water, they had struggled enough on their own that they were at a point of accepting that He alone had the power to save them from their storm, Just as He alone has the power to save us from our storm. I'm just praying that our family can keep our eyes fixed on him without getting distracted by the wind and the waves so that we can walk with him over the storms that threaten us at the moment.

Thank you all for your continued prayers. I hope this entry makes sense....I can hardly hold my eyes open tonight so if this is incomprehendible, I apologize. We are, of course, asking that you continue to pray for Ned's health, the doctors healing hands and discernment with regard to Ned's best interest, and our ability to surrender our child unto God and to trust Him completely with little Ned. We love you all so very dearly!!

Betsy, Travis, Jack & Ned

Update on Ned

2008-02-09T21:07:00.000-05:00

It's a little after 9:00pm, and I just returned from the hospital to the RMH to get some Advil and blog for a minute. I think Betsy is enjoying her time in Cherryville with Jack, even though he seems to have a cold. Ned is still doing okay today. Upon my arrival to UNCH this morning, the nurses informed me that instead of going from 30 mm to 29 mm on the jet vent during the night last night, they had to go back up to 31 mm where he's been all day, because one of his blood gases wasn't perfect. The doctors then came in and told me it looks like we're "pretty much there" in terms of getting off the jet vent, and that they would most likely be doing the heart coarc repair on Tuesday. Hearing those words did strike some fear in me, as we have been praying for his jet vent settings to go down so we could get on the regular vent and through this surgery, and now that the time is coming next week, I'm kind of like "whoa". I do know that he is in God's hands and I have prayed over him all day long just asking God to please take care of our little punkin, and thanking Him for everything he's been doing in our lives. I truly am helpless in this situation, and there are no stronger hands than our Lord's for our son to be in. I can't help but think back to all the times on this journey, and how many answered prayers there have been. I know without a doubt in my mind that we could never have gone through all this without a Lord and God that deeply cares for us.

My brother Alan and sister Danielle came up today to be with me, and we had a good visit. Bubba (Alan) drove up from Denver and Danielle came down from NC State and we had lunch. As D left for work, Bubba stayed the rest of the afternoon with me (I think just so we could go to Mama Dip's to eat supper!) and Ned. Bubba, Ned and I even got the Duke game in this afternoon. When I left, Ned was resting peacefully, and they were getting ready to drop the PIP on his vent down to 30 and keep weining him through tonight and tomorrow and Monday. Please continue to pray that Ned will accept these changes, and please start praying that this heart surgery will go without a hitch, and Ned can get on the road back to recovery. While we are confident in the pediatric surgery team up here in UNCH, we are more confident in Christ, am we are believing, and expecting, that His merciful hand will guide the doctors through this repair, and we will be bringing Ned home with us.

While I was home Thursday night, Jack asked me when we were bringing his baby Ned home. I simply told him the truth, "Son, I don't know, Ned is sick, but he's getting better and better." Jack then asked me if he could play hide and seek with him when he finally did get home. I of course said sure, and today I told Ned that his big brother couldn't wait to get him home to play hide and seek with him. It's moments like these that I truly feel reassured that God IS IN THIS situation, and that one day, we WILL be taking him home to play with Jack and Margaret.

One other side note to tell all of our faithful praying friends and family about. One of my good friends (Tuan Bui) owns several gas stations in the area, and last Tuesday, his mom was working at one of them in Fort Mill, SC, when a guy came in to rob the store. She did exactly what she was told, gave him the money, etc., and this person still shot her in the abdomen on his way out, in addition to the former mayor of that town who was coming into the store. She was in the ICU at CMC until today, when they moved her to a regular room I believe. He and his family are holding up okay. What amazes me is that he really didn't even know about Ned until Tuesday when one of our other friends who works in the ICU at CMC saw him there with his mother, and told him our story. Ever since that day, even though he is in the middle of his own crisis, he has called me to check on little Ned. I of course assure him that I am praying for his mom as well. Please keep this woman and her family in your prayers as well.

As I was proofreading back over what I've written, I was thinking...man, I must be out of touch tonight, I feel like I have nothing to offer. I was then taken by the Lord to yet another verse that I have on my computer at work, that I read everyday. Oswald Chambers writes in the July 27 entry of "My Utmost for His Highest"... "If things are spiritually dark to me, then I may be sure there is something I will not do". I have this posted on my PC to remind me that it does take sacrifice and discipline to stay in God's word daily, and keep your walk with Him going. On the flip side of that, be assured that once you are His though, he will never depart from you. You can turn your head from Him, but when you do decide to turn back, He will be there waiting. I was then taken to today's entry, February 9th, and wow! Reading all the comments and emails that you guys send us makes us that much more thankful that God is leading this whole thing. The entry for today touches on that. The scripture is Isaiah 40:28 "The everlating God ... fainteth not, neither is weary." Chambers then goes on to say: "Are you exhausted spritually? Exhaustion means that the vital forces are worn right out. Spiritual exhaustion never comes through sin but only through service, and whether or not you are exhausted will depend upon where you get your supplies. Jesus said to Peter -- 'Feed My sheep,' but He gave him nothing to feed them with. The process of being made broken bread and poured-out wine means that you have to be the nourishment for other souls until they learn to feed on God. They must drain you to the dregs. Be careful that you get your supply, or before long you will be utterly exhausted. Before other souls learn to draw on the life of the Lord Jesus direct, they have to draw on it thorugh you; you have to be literally 'sucked' until they learn to take their nourishment from God. We owe it to God to be our best for His lambs and His sheep as well as for Himself." This whole passage reminded me of time and time again where our Bible study teacher has told us "Inflow, outflow". By spreading the word of God, and being friends to the friendless, creditors to those in debt, and prayerful for those who don't pray, you are giving of yourself. God in turn fills that empty space back up, with more supply than you could ever imagine. When we say to her "I wish we could start everyday over here doing this" (talking about our Saturday morning Bible study), she says "Sooner or later you have to learn to feed yourself". This has profound truth in it. I am certainly thankful that I have had someone to "feed" me for so long, to help me along the path of walking with the Lord. I think that God knew it would take something like this for us to really step out and glorify His name, to be a witness to his strength and neverending love for us. We all do OWE it to God to feed His flock. I myself am being fed, and I hope and pray that this situation God has orchestrated is feeding others as well. We are truly only vessels, and it's all about Him.

OK, I'm done for tonight. Please continue to keep Ned and my family in your prayers.

Much love to you all

In Christ,
Travis, Betsy, Jack & Ned

A Short Post From Trav

2008-02-08T23:19:00.000-05:00

Betsy has gone home to Cherryville to see Jack, Margaret and her family for the weekend, and I came up after work today to stay with Nedder (as I have started calling him for some odd reason...maybe b/c I call Jack, Jacker). I went home last night (Thursday) to get my truck out of the shop and see the progress on the house, then worked today and came back tonight. Anyway, Ned is still doing well tonight. They have gotten him down to 30mm on the jet vent, and the Dr. told me that we're getting close to being able to get on the regular vent, hopefully by the end of the weekend. The nurse gave him a bath tonight right before I got here (I think his 2nd bath, boy is he in for a rude awakening when we get him home... 2 baths in 3 weeks???... me and Jack tried to skip his bath once... and only once if you know what I mean... Betsy doesn't like her babies to be dirty!) and he was not very happy when I arrived. She cleaned his incision very well, and he didn't seem to like that. They have taken the stiches out of it, and it's kinda open right now, to let any infection that might try to set in come out (better out than in I always say ... OK those of you with kids who insist on watching Shrek 4,000 times a week get it). It was heart-breaking to see that on your little child, but I know it's for the best, and it will help in the long run. Anyway, I caught myself, just for a minute, thinking "Why us?". God immediately reminded me of when I was talking to Betsy's uncle, and my very good fishing buddy and friend in Christ of mine, Mark, even before Ned was born, back when we first found out about Ned's condition, and I said to him that I was wanting to ask God "Why us?", but wasn't sure if that was my place or not. He simply looked me dead in the eye, and said, "Why not you?". This sharp comment, loaded with truth, has stuck with me, and everytime I find myself overwhelmed by the circumstances, I always say to myself, "Why not us?". I am thankful that God is richly blessing us, and hopefully everyone who reads this blog, through this endeavor. Being in a place like this, you really realize that the saying "it could be worse" is absolutely true. My prayer is that someone who may be reading this blog about Ned's life so far will gain hope and faith and comfort in our Lord and Savior. I really think this blog was God-ordained, and I'm so thankful that my wife was "listening" enough to start this. It's amazing how God puts people and circumstances in our lives to speak to us for Him all the time, and we just miss them completely. I know I do. I can only imagine how it will feel when we are with Christ and he shows us what all we've missed along this journey. That brings me to the next lesson I learned tonight. When I got back up here to Chapel Hill, I found Betsy had left me some scripture that Ann (our Sat. morning Bible study teacher) had sent to us up here. It was from Isaiah 49:2 that says, "In the shadow of His hand hath He hid me - and made me a polished shaft - in His quiver He hid me!" She went on to write that we must all go through the shadowey parts of life, the darkness. But then she went on to say that in the darkness is where we grow exponentially. It is then, that he is polishing us. That dark shadow we're in is actually the shade of His hand, holding us just within reach, and never letting us go. I take comfort in the fact that even in the "dark" times, Christ still has a firm grasp on my family. When we are not seeing the light of day, we are actually being molded, groomed, and hopefully growing in our faith and everyday walk with the Lord!

I'm so thankful for all of you that God has put in our paths along the way. I thank God for all of you that are sending cards and flowers, calling, and faithfully lifting Ned and my famly up in prayer. We have met some incredible people up here also, like James and Honey, who themselves have little Delsin who was up in the NICU beside Ned. I ran into them tonight, and it's very comforting to know that people you just met and don't really know are actually praying for your little one, as we are for theirs. Please keep Delsin in your prayers as well.

OK, I'm done for the night.

Thanks to all of you again.

In Christ,

TD

A Day of Rest

2008-02-07T23:45:00.000-05:00

I spent my entire day by Ned's bedside from about 10:00am until 11:00pm. While I realize that doesn't sound like a day of rest, it certainly was blissfully peaceful. My little Ned came down on his vent settings some today (we're now at 31 and need to get down to the lower 20's for surgery) and he tolerated more small changes without any effects on his stats!!! In fact, his stats remained so steady today that his monitor didn't alarm one time all day. Since it was so quiet and my eyes didn't stay fixed on his monitors all day, I read an entire book... Max Lucado's "3:16". I recommend it....it's a quick read (obviously) and there is a good bit of Jewish and Greek cultural and lingual details that better define how Jesus would have been interpreted during His time on this earth.

There were several parts of this book that have really stuck with me today. The first is that in John 1:38 when John and Andrew first encounter Jesus, their first request from him is "where are you staying?". Lucado points out that their main interest is in getting to know Jesus, and in joining Him wherever He is. They could have asked for signs and miracles upon their first meeting in order for Jesus to prove His deity, but instead, they were interested in being near Him so they could better know him. I think that is so profound. We often give the Lord a laundry list of all the things we would like from Him and all that we would like for Him to do for us, but we haven't taken one step out of our routine and comfort zone to follow Him where He leads us. Whether you hear the voice of God urging you to "follow Him" or if you are simply seeking Him out to know something greater, it is important to realize that what you can learn from knowing Him is far more powerful than receiving what you demand from Him.

Today I am prising God for allowing me to be Ned's mother. I looked at my little one in his bed tonight and I marveled at how God could use such a tiny person to speak to the lives of so many adults. My life has been blessed to be a part of what God is doing in the hearts of others through Ned's sickness. I wondered how Mary must have felt to have been chosen to raise Jesus and how blessed she must have felt to have been given the honor of providing and caring for God in His feeble infant body....Wow!

God has answered our prayers to allow Ned to continue to slowly be weaned off the vent. We are praying for continuation of such success. I also want to praise God for answering the prayer of a close friend who has been having some fears and concerns about her ability to have children. We are also thanking God for allowing Travis to get home safely today. I thank God for the peace he has delivered in Ned's room the past couple days. While the road ahead still looks a bit rocky, I think it is important to focus on and give thanks for the prayers He has already answered. In seeing from where He has brought us, looking at where we're going doesn't look so insurmountable.

Again thank you all for your prayers, cards, emails, phone calls and other ways you have shown us love and support. I want to apologize for not always responding to emails. If I don't have your email address, I can't respond to the messages left on the blog? I just wanted everyone to know that when I can, I attempt to personally thank everyone for their love, but I can't always get in touch with everyone? Love and blessings to you all!

Betsy, Travis, Jack & Ned

Slow and Steady Wins the Race

2008-02-07T10:02:00.000-05:00

Little punkin was looking much better yesterday than he has in some time. His swelling continues to "deflate" and his stats remained really stable yesterday. While glancing at him, it doesn't appear that it would have been a day of praise and thanksgiving, but it DEFFINITELY was.

Yesterday morning, Ned opened his eyes and seemed fairly alert without acting agitated for some time. He was able to track about the room with his little eyes (which I'm not sure if I've mentioned, but they are a deep grayish blue- beautiful). It gave me such a sense of connection with him, just to know that he could maybe see that Travis and I were there by his bedside encouraging him and praying for his recovery! They made some teenie, tiny baby steps in moving him off the jet vent and taking him off one of his blood pressure medications. As I have mentioned before, Ned does not accept change well. He requires that they make the absolute smallest incremental changes and then allow some adjustment period following each change (this is a trait he has inherited from his daddy!). Because he is so resistant to change, they have pretty much ruled out surgery this week. I actually think it will be the end of next week at the earliest, but we'll just see how God chooses to work that out. Since the surgery date is completely at the mercy of Ned's body, to me, that is the same as putting it on God's timing since he is the creator and healer of his body.

Travis has developed a love/hate relationship with the medical staff here as they are all UNC fans and he insists on wearing his Duke attire every, single day! The staff had some fun at Travis' expense yesterday, but I suppose, in the end, Travis got the last laugh last night! Below are some pictures of Ned showing off his UNC game gear (compliments of our nurses):

I am heading back to the hospital now. Travis has left to work today and tomorrow since the surgery is out for today and tomorrow. Today, I am just praying that my son can find peace and comfort in the arms of the Lord again today and that he can remain stable through the smallest changes. I pray he is tolerant and that it doesn't upset his little body. Please continue to pray for little Jack and Margaret. I want them to continue to feel loved and supported even though I have to be away at the moment? I'm just praying that I can keep my focus on God and not get bogged down with all the "what if" scenarios. I have to remember that my God is Good, my God is soverign, and my God has plans for Ned ...plans for a future!

I love you all and really miss everyone dearly. I have given much thought over the past several days to "my people" and how God referred to those he held most dear. I have gained a much better understanding of how precious "my people" are to me and what a special place you all hold in my heart. I so long to be close to you all again and I can't imagine how if I long to be close with you, how much more your Lord and creator must long for an even deeper closeness.

Love to you all!

Betsy, Travis, Jack & Ned

A Defined Purpose

2008-02-06T00:26:00.000-05:00

It has been a very slow and steady day for our little one, for which we are extremely thankful. Ned's stats have been really good all day. He took a couple little dips tonight as they attempted to wean his vent a little faster than he was ready to accept so the doctor's eased back onto Ned's slow little pace and he picked back up rather quickly. The heart surgery still hasn't been scheduled and won't be until Ned is off the jet vent. His little body controls the pace of that so I am just believing that as I prayed that God would control the timing of the surgery to be best for Ned, that his low tolerance for change is God's way of making the doctors listen to Him!

Other than being thankful for the beautiful, uneventful day, I have been consumed today with really mediatating on God's purpose for this situation and for my life in general. I can't fully begin to understand how and to what extent God's purpose for Ned's life will be manifested, but I can see how God has used him in the life of our family already. I know that when Ned comes home, he will be coming to a more God focused home than he would have if we hadn't been through this valley. He will now come home not only to a mother who prays over him, but also a father who prays outloud and uninhibited for the sake of his family. He will come home to an aunt who has gotten past some anxiety to pray for him at school with her class. He will join a family who has truely been blessed to witness, first hand, the beauty and love of the body of Christ. And although he will never remember all of this, my little Ned will have already lain a legacy for Christ that most of us could only hope to have established by our last days on this Earth. I am excited about being able to let him know when he is older how God used him as an infant and my hope is that Travis and I will have given him such a foundation in Christ that this will only be the beginning of how Ned's life will impact others. I am also hopeful that by seeing how my very small son has been used by the Lord, that I too will allow myself to be used in even greater ways. That I can come to the father as His child, open and trusting to what He has in store for me and ready and willing for His service.

This birth experience has been much different from what I experienced with Jack. I'll share a quick encounter before I sign off for the night.....

About 6 months or so after Jack was born, I found myself completely out of touch with the Lord. I was still going to church, but just in the total routine change with adding Jack to the household, I had neglected to spend any quiet time in study or prayer with God and the effects of that change were becoming more and more evident to me. I remember thinking how I hadn't heard God's voice speaking to me in quite some time and I was becoming aware of the distance that I had allowed to come between me and my God. We were getting ready to go to the beach and I had planned to leave work at lunch, go by the mall for a new pair of tennis shoes and go home and get packed up (there's a lot to pack when you're taking a 6-month-old on a week's vacation!). I was running behind and didn't leave work until almost 2pm and I was completely frazzled. I contemplated skipping the mall trip, but I decided to settle down, relax, pray and allow God's timing to affect my life. I had gotten so caught up in routine with Jack's eating, sleeping, bath, schedules that my focus was on my time, not His. As I pulled off the interstate at the mall, there was a homeless man on the side of the road. I, of course, thought to myself, "how do people end up homeless....how did you get yourself in such a mess buddy?" As I ran in the mall, I kept thinking about that man and I clearly heard God say, "Betsy, take that man some money."....I protested, "But, he'll probably just take it and buy alcohol or drugs." God interrupted, "That's not your concern, all you need to do is obediently respond to what I am asking you to do." So, I go and buy a little Bible and then I go to the ATM. I take $20 out of the ATM and as it spits out my money, the machine says "transaction cancelled". I ask around, but no one knows who owns the ATM and I'm feeling like I have stollen $20? Anyway, I leave word at the cookie counter that I think the machine is broken and it may have given me money without debiting my account? I leave the mall and head back to the homeless guy. The whole way I kept thinking, "well, if I don't hit that red light, what will I do?" But God assured me that He would handle the whole timing issue. As I pulled up, the light turned red (His timing). I rolled down my window and handed the guy the $20 and the Bible. He had the most clear, blue eyes and he looked very intently at me and he said, "you know, don't you?" I was very taken aback since I thought I was the one who was being the little messenger for God, but I responded, "Yes, I know.... Do you know Him?" He looked me dead in the face and answered, "The only think I know is the Love of My Father." The light turned green, I drove off. It was immediately like God said, "If you will take the time and listen for me, I'll always talk to you and use you." It was and elated feeling knowing that all I had to do was turn back to Him and He was right there waiting to be a part of my every day life again. And it was all my blessing and benefit, I gave nothing of my own, not even my own $20.

Having shared that, I have just known that in this experience with Ned, I am learning a very different lesson than I did after having Jack. I don't think either is more or less important, but just part of God's plan to continue to strengthen my relationship with Him. I have thought often of Paul and how his time in prison led to the salvation of the Roman soldiers. In understanding his purpose, Paul was able to praise God for his struggles. I am seeking that same level of understanding and trust.

Please continue to pray for God's timing with regard Ned's surgery. While I am so anticipating being past the heart surgery, I am learning patience in yeilding to and trusting God's timing. Like I have said before, in my mind, I wish that this would all be over and I could just pick my son up and take him home, but I know that God has us here for a reason and that He will allow us to move past "this place" in our lives only when His purpose has been fulfilled. Please pray that Travis and I will be sensative to the Holy Spirit so that we can be obedient servants while we are here.

Love, thanksgiving and blessings to you all!
Betsy, Travis, Jack & Ned

Just a Waiting Game

2008-02-04T23:17:00.000-05:00

I have returned to Chapel Hill after a wonderful day trip to Cherryville to see the family. I have never been so thankful to be at home in my entire life! I had a wonderful day with Jack and Margaret, and a really difficult time leaving again this morning. I got to sleep with each of them for one night and I was so reminded of the wonderful blessings God has already given me. I woke up often in the night and just thanked the Lord for the opportunity to be there loving on my babes and I'm just so looking forward to when little Ned can be curled up in there with us! Jack was completely full of himself, as usual! He kept thanking me for the UNC football uniform and telling me how much he missed and loved me. He also woke up about 3am Saturday night telling me that he needed a piano and a tuba to go along with his drums and guitar? I told him I wasn't sure that we could find a child's tuba anywhere, but I'd be on the lookout. Margaret took me on a grand tour of the new WalMart.....she is completely taken with having one so close. She caught me up on everything that was going on at school and in her world. I feel like I've missed so much, but she filled me with info for hours on Saturday night while we ran some errands.

Little Ned is pretty much the same....he has remained stable, and they haven't attempted to wean him off of any of his many medications or the jet vent. He received some blood this afternoon which made a huge difference in his color and blood pressures. The cardiac surgeon came by this afternoon. I asked him for clarification regarding the statistics he had given me earlier regarding the risk of Ned's heart surgery. He basically told me that Ned's procedure, given his condition, would have about a 20%-25% mortality risk. Something about hearing the potential for death for my 14-day-old son caused me some anxiety this afternoon, but when I remembered that they had also told me that he had a 40% chance of survival after diagnosing his CDH, I decided to put him back in God's hands where he has been so well taken care of so far. His surgery has been postponed until at least Thursday. They are working on getting Ned's swelling down in a slow and steady manner; then, they will start weaning him off the jet vent.

When I left the hospital on Saturday, before going home, I felt like that voice of accusation was in my ear again taunting me about the power of prayer.....like, some people get well and they never pray....do you think your prayers make a difference in Ned's condition? But before I could clearly respond, the Lord said to me, "Betsy, don't let these fears consume you because this battle is already won." The truth is that I believe I follow and put my trust in a soverign God. He does what his best for his children, all of his children. I can't begin to understand all His ways, nor will I question them. I'm not sure how He works all the time, but I'm certain that He always works and He always works for good. I also know beyond a shadow of a doubt that if I hadn't placed my son in His care and if I and so many others weren't praying for Ned, I would have missed such blessing in my life. I would have missed an opportunity to see God as very near and real in my life. I have learned so much through my son's very short existance and I can only hope that in the rest of my life, I can allow my presence here on this Earth to make the impact for Christ that Ned has made in two weeks.

I am also asking everyone to pray for Dr. Bob Stewert. I believe he is the heart surgeon who will be performing Ned's heart repair. He is very established doctor and we are fortunate to receive his care, but there is something a bit distant about him. Neither Travis or I could exactly place what it was, but we just feel like he may be in need of some prayer right now?

Thank you all for your continued support and prayer!!!! Much love to you all!

Betsy, Travis, Jack & Ned

Not Much To Report

2008-02-03T22:44:00.000-05:00

Tonight I am thanking our Lord and Savior that he has kept Ned stable this weekend in preparation for his next surgery (aorta coarctation repair) this coming week. Betsy was able to go home Saturday afternoon to spend some much needed, much appreciated time with Jacker and Margaret, and hopefully get some rest of her own. She was happy to report to me that Jack ran around all weekend with his full UNC football uniform on shouting "Now I'm a reall Tarheel". I sure have some ground to make up with him! Betsy will return to Chapel Hill Monday morning. Normally, Betsy would make absolutely sure she was confident in leaving me with the kiddos if she ever went out of town or anything, but she seemed to be alright with fact that Ned and I wouldn't be getting into much mischief in her absence.

The doctors and nurses are saying they are going to try and start weining him off the jet vent tomorrow morning, so we'll see how that goes. At this time, we are praying that the transition to the regular vent will go smoothly, and that God will have his mighty hand on Ned, the doctors and nurses, and us while they prepare to fix Ned's aorta this coming week. It has been a rocky week, but God has blessed us with a smooth weekend. Ned is still swollen, but it seems to be subsiding some. He has been taking in much more fluids that he has been urinating out since last Thursday (hence the swelling), but this morning, he started urinating out much more than he was taking in, so hopefully, he will continue to loose some of that excess fluid in his tissue.

Overall, the weekend has been pretty uneventful (thank you Lord), except for Ned's many visitors. Aunt Kim Beam and Tammy Hefner showed up around lunch, as did Nana and Paw-paw Bill (Travis's parents), and got to see our little bundle of joy. Later this afternoon, Uncle Mark and Aunt Dawn Beam also came up. Visiting with all these wonderful people sure did make our weekend while we were both missing Betsy.

Anyway, it's late and I'm going to bed. Please keep Ned in your prayers, as well as Betsy as she travels back up to Chapel Hill on Monday morning. Again, thank you all for all you do. The cards, visits, and most of all prayers mean the world to us.

In Christ,

Trav

Staying the Course

2008-02-02T21:31:00.000-05:00

As of today and tonight, Ned is staying the course. Betsy and I are in awe and humbled by God's work through our little family. After switching him to the jet vent and playing with his medications a little, Ned has continued to be stable today. They tried to wein him down on the jet vent some last night, but he let them know real quick he wasn't prepared for that, so they put the settings back. We are thanking our awesome God that he has stayed stable today. They did take him off the paralytic drug they had him on so he wouldn't move around and drop his stats, and he has been able to do without it so far. They said it would take some time to completely get out of his system, so he really hasn't moved a whole lot yet. He is still swollen, but he is urinating more and more frequently now, so hopefully, he will be able to shed some of the excess fluid. Betsy was going to go home to see Jack and Margaret and her family Friday afternoon, but the doctors said if it was them, they would not go that far away, so of course Betsy stayed. The doctors did say this afternoon though, that they felt confident he was stabilized, so Betsy headed for C-ville for the night to see Jack and Margaret, and even went bearing gifts. She took Margaretta some clothes, and much to my objection, took Jack a UNC football helmet with the full shoulder pads and jersey with his name on it. I can partially thank Sarah Fowler for that, thanks alot! Betsy said he was running around saying he's a real tarheel now. Great. I think I'll make a trip to Durham one of these days and get the kid some real gear (maybe not football gear!) myself. Ned and I just hung out this afternoon, and watched some of the Duke/Miami game. Everytime Duke hit a three, he threw his arms up over his head, so I think he's a Duke fan. OK, I just made that up. I guess I'll have a little more work to do on Jack.

Anyway, we just continue to thank God for each and every one of the miracles that He is performing in Ned's life each day. Although we can't wait to get these surgeries over and take this little guy home, we are content in the fact that this is God's plan, God's timing, God's glory. We take comfort in the fact that there are bigger, stronger, more healing arms holding Ned when we can't. We are thankful for the nurses, doctors, and surgeons that the Lord has placed in our path right now, and your prayers for them as well as Ned and our family are greatly appreciated.

In Christ,

Travis, Betsy, Jack and Ned

Answer To Specific Prayer

2008-02-01T23:18:00.000-05:00

Betsy and I just returned from the hospital for the night. It really seems like God knows just when to pick you back up. After we left this afternoon, we were both honestly terrified, but before eating supper, we just prayed that God would strengthen us to endure whatever situation we would face upon returning to Ned's room, and we specifically prayed for him to stabilize tonight. We came into this knowing there would be some complications, and that it could very well be a roller-coaster ride; however, since Ned's birth, until yesterday, everything went pretty smoothly (Thank you Lord). I think we got spoiled into thinking that we may not have to face such complications? When we returned to his room, the nurses and doctors informed us than he seems to like the new jet vent he is on, and that his stats had been pretty even, not up and down like this morning and afternoon. It was such a blessing to walk back into that room and know that God had been there, and was still there with him, even in our little "break". He knows just what we need and He is showing us that He responds to our prayers (and He is loving all the other prayers we are receiving on Ned's behalf)!!!

I still don't know what God has in store for us, and how long this ride in the hospital will last, but I just keep telling myself "His time, not mine". I continuously pray, "OK Lord, we're done here, let's get him fixed and get him home." I guess for right now, he's saying, "Not yet, but I do love you, and this is for your own good." That's pretty much all I have right now, as we are going to try to get in the bed a little "early" tonight. It's funny how three weeks ago, "early" to bed for us was 8:00pm, and now it's midnight! Anyway, thank you all for your endless prayers and support you have given to us. From driving 3 hours to come up here, to praying diligently, to offering to bring up clothes, to doing anything on the house we're so close to finishing at home, we both really appreciate you all greatly. Please continue to lift Ned, Betsy, Jack, me and the rest of our families up in prayer. They are surely felt up here in Chapel Hill.

In Christ,

Travis, Betsy, Jack and Ned

Leaning on the Promises

2008-02-01T16:52:00.001-05:00

It has definitely been a rocky couple of days for our little Ned. Since his heart cath, he has had a difficult time recouperating. When Travis and I got to the hospital this morning, Ned's blood pressure was low, he wasn't passing liquids through his system which you could easily see by looking at him (he is really swollen) and he is having a difficult time getting oxygenated blood flow to the lower extremities of his body. The doctors believe all of this is probably due to his already problematic heart reacting to having the catheter and dye injected yesterday; however, they are running a gamut of tests at the moment to rule out any other lingering problem that may be causing his downhill slide. Ned also developed a fever last night which makes them think he is fighting some infection. They started him on several antibiotics to go ahead and assist with fighting it off until his blood cultures come back and they can identify the exact bacteria. I had planned on going home this weekend to spend time with Jack and Margaret, but the doctors felt that due to Ned's condition becoming more and more critical, it would be best if I stayed until his stats could be leveled out. Today has been extremely frightening and overwhelming. It is so heart breaking to watch your little one lie there while they add medication after medicaiton to attempt to stabilize him. Our nurse said that Ned had won the contest in the PICU today for the most medication drips! They also put Ned on a paralytic drug this afternoon whic paralyzes him for the purpose of preventing him from fighting the new jet vent. While this drug prevents him from moving, it doesn't prevent him from feeling pain, so they have to watch his stats carefully now to look for signs of discomfort as he won't be able to tell them from any action of his own. It was really difficult for me to think that with all he had going on with his stats today, that some of it could be indicative of pain and we really couldn't know for sure!

On this very uncertain and unsettling day, it is best for me to dwell on God's promises and to reflect on faithfulness to me in the past. I am thankful that Ned was able to breath on his own at birth, thankful that he sailed through his hernia repair surgery, thankful that he responds to the sound of my voice and seems to be aware that his Mommy is there and loves him, thankful that we were blessed enough to have foreknowledge of some of his complications so we could be in a facility with wonderful medical care, thankful that God spent years preparing Travis and I for this journey by bringing us deeper into a daily walk with Him so that we would know His word and be able to trust in it during this time, thankful that we are able to have children, thankful that I have been blessed with a Godly husband and thankful that God does not forsake me nor leave me.

I have received so many scriptures that have lifted and carried me through some of my darker days. I received one in the mail from our Bible teacher just yesterday (how perfect is God's timing). I have taped it to Ned's bed and I pray it over him all day long :

Psalm 127:13-14

13 What, what would have become of me had I not believed that I would see the Lord's goodness in the land of the LIVING!

14Wait and hope for and EXPECT the Lord; be brave and of good courage and let your (Ned's) heart be stout and enduring. Yes, wait for and hope for and EXPECT the Lord.

Please continue to pray for little Ned's healing. I sense such a special nature in his sweet spirit. While I long for the day when I can hold him and calm his fears and pains, at this time, I must be willing and content to allow him to continue to rest in the arms of the Lord. I believe that God will allow me to raise and be a mother to Ned, but my time for that has not yet come. But I will continue to go boldly before the throne and make my requests to him and believing that my God will answer me.

One more verse for Ned: (Luke 1:66,80)

66And all who heard them laid them up in their hearts, saying, Whatever will this little boy be then? For the hand of the Lord was so evidently with him protecting and aiding him.

80And the little boy grew and became strong in spirit;

Thank you all for your faithful prayers for my baby!

Betsy, Travis, Jack & Ned

A Busy 24 Hours

2008-01-31T12:07:00.000-05:00

The cardiac team performed Ned's heart cath today to determine whether his aorta was interrputed or narrowed. They just came in and let us know that it was a narrowing of the heart which reduced the riskiness of the surgery from like a 9.8 to a 5.5 on a scale of 0-10. I'm not exactly sure how those numbers correlate, like if that means he has a 50.0% chance of surviving the surgery or a 50.5% chance of the surgery going off without a hitch. The surgeon used the word "risky" and I'll have to ask for clarification when they come back by. The good news is that the aorta isn't interrupted so they won't have to put Ned on the heart/lung bypass machine prior to beginning surgery. What an answer to prayer. I was prepared for Ned to need the ECMO machine before he was born because they had really prepared me for that, but since he has so easily been able to avoid it (thank you precious Lord), now I can't stand the thought of him needing that. As we stand, God continues to be our rock and answer my little prayers among the big one (healing, of course). They will keep ECMO available during surgery in the event that his lungs can't sustain, but I'm believing that God will continue to allow Ned's little life to be a miracle to all around him.

They have just brought Ned back to the room. He did well during the cath except for an increased, heart rythm which they quickly corrected with medication. We're still not sure when his surgery would be. It will most likely be scheduled for next week, but they could potentially perform it tomorrow? Please be praying that God will miraculously heal Ned's little heart and safely guide him through this surgery as He did the last time. I just pray that God will continue to hover around Ned wherever he is and that through this, God's awesome healing power will be revealed to many. I am just thanking Him for how far he has brought us and how many blessings He has already bestowed on our lives. While it's difficult to imagine now, I'm sure that one day I'll be glad I was chosen by God to have this experience to learn how to really appreciate the blessings and precious people God has placed in our lives, as well as, learn how to draw really near to Him at all times so that during the difficult times, He is already very close by.

Thank you for all your diligent prayers for little Ned. Your dedication to my child inspires and uplifts me daily!

Betsy, Travis, Jack & Ned

Difficult Day

2008-01-30T23:03:00.000-05:00

Well, today has been a struggle. I expect to keep this entry pretty short since I can't hold my eyes open, but I need the prayer for certain right now. Last night, I prayed that God would ordain the schedule for Ned's surgery and his journey home. I prayed that the details of how and when tests and procedures were performed would be a direct reflection of his perfect will for little Ned. So this morning, when I arrived at the hospital, the doctors let me know that they had cancelled the dye test on his heart for today and rescheduled for tomorrow. I felt really good about that change and felt certain that God had made that decision just as I had asked him.

Then, when I returned from lunch, the nurse informed me that they had decided to move Ned to the pediactric intensive care unit. Again, I could trust that God was making changes to the original plan to see if I could continue to trust in Him completely. After Ned was transferred, I went to visit with him in his room. It is a completely different enviornment down there. There were so many sick children from Ned's age to like 17. These children have severe defects and problems that can only be managed not cured. When I got to Ned's room and he was getting settled in, he started "silent crying" meaning that he looks like he is screaming and crying but no volume. It is completely pitiful and it breaks my heart. The doctors down in the PICU ordered him a new sedation medicine.....it didn't go very will. Ned didn't take well to the new medicine and his blook pressue dropped pretty low and it took about 2 hours to get it back up to the low side of normal. It was terrifying, not to mention I wasn't familiar with the enviornment, doctors and nursing staff. When I came back to the house about 30 minues ago, his blood pressure was on the rise, but I still had a really difficult time leaving him. I have been so upset by all the changes that Travis is heading back up here right now....a day early. I hated leaving Ned in a big crib and a room all to himself tonight. I know it's just and enviornmental change and that God is just as present in that room as the NICU, but the whole experience tonight left me completely drained. On the bright side, my weaknesses were more evident to me than ever so it was somewhat easy for me to lay my son back in the hands of the Lord as I left the hospital. I was again shown how very incapable I am of taking care of his without God's provision.

Please keep this move in your prayers and that I will find comfort in our new place! I'm sure I'll feel fine about them once a little time passes, but at the moment I'm really missing the NICU doctors, nurses and staff. I'll write more tomorrow when I can think.....too exhausted tonight (I'll also post pictures of Ned in the crib....it makes him look tiny). Love to you all.....

Betsy

I must confess....

2008-01-28T14:21:00.000-05:00

Before I give any updates on Ned this morning, I need to share with everyone where I am spiritually so that I can get this small voice out of the back of my head. I have struggled the past two days, not with my faith, but with my endurance. I suppose that with Travis leaving and things going so well with Ned, I have just been put in a place where I feel very afraid of the next step. I feel like in order to move forward, I am walking a very narrow path and I fear slipping and failing in a way that will reflect poorly on God. I have to line out what it is that is going on within me spiritually so I can be clear that my shortcomings are in no was a reflection of what God can do in my life.

For the past two days, I have felt extremely burdened by the amounts of emails I have received thanking me and praising me for my faith. While I am completely humbled by them, the amount of responsibility I feel because of them has been overwhelming. I am less concerned about faltering in front of people who know me, but the thought that someone may interpret my weakness as a weakness of God is really weighing on me. All day yesterday, I had a voice in my head throwing every possible fear at me. I have to put all this on the table so I can move forward confidently following God. I believe that Ned's situation has really sparked people to sincerely and earnestly pray and bring themselves before His throne and it is for that reason that I think I feel so threatened.

The fears that burdened me yesterday ranged from thoughts that 'just because Ned has done this well so far, doesn't mean that you're bringing him home' to thinking about how I couldn't stay here at the Ronald McDonald house and clean-up if I knew Ned wasn't going to be with me. I fear that if his condition severely worsens or if my worst nightmare comes to pass that I won't be able to find God's purpose in it and I won't have anything left to share from His word. And that if I can't find my way, all that I have said and posted up to this point will seem fraudulent and phoney. So I am saying this now, regardless of path down which the Lord leads our family, Travis and I will continue to believe in, worship and praise our almighty God. We choose to build our home on the firm foundation of God and in that safe dwelling we will seek comfort and refuge. Please continue to pray that I will be able to keep my eyes firmly focused on Jesus and that in the light of His glory, my fears will be relieved.

Now that I have gotten that off my chest, little Ned is doing well. We received his genetic test results back today.....completely normal- Praise God!! The doctors are still wanting to do a more in-depth analysis becuase he had several anomolies, but I feel completely assured that he is fine. In fact, one of the reasons they mentioned this morning that they were seeking further testing was that they said he didn't have a spleen (according to an ultrasound). But, the surgeon had mentioned to Travis and I that Ned's spleen looked completely normal when he put it back in place during his hernia repair. I guess that just hadn't made it into the paper file so they said they would confirm that with Dr. Adamson and would basically ignore the ultrasound report concerning that.

They are working him down on his vent settings in hopes of having him back on the conventional vent by Wednesday. The cardiologist would like to perform a little procedure where they will insert dye into his heart so they can get a better look at his aorta to make some determinations about surgery. I suppose we'll have a better idea about a timeframe for the heart surgery following that procedure on Wednesday.

Otherwise, he has been doing great! They have had to increase his sedation medications a bit because he's such a little fighter that he continually tries to breathe over the vent and yesterday when I visited, he continually tried to open his eyes and look for me. He was also having the hiccups. I was afraid that the hiccups would cause his patch to tear and I hated the fact that he seems to be trying to find me. It makes me feel like he is hurting or uncomfortable because he seems so unsettled. When I was talking to him yesterday afternoon I just kept saying, "just rest in the fact that I'm here and I'll always be right here....you don't have to see me." It hurt my heart to see him agitated. The nurses assured me that he wasn't in any pain or his heart rate would have been increasing. I layed my hands on Ned's little body and asked God that if there was to be pain and suffering in this journey, please let me endure it all. I can't bear the thought of Ned having to be in pain or feel afraid or abandoned. I know how terribly that hurt my heart and I thought so much of how Jesus must have felt as he faced the cross. His love for each of us was so tremendous and sacrificial that he couldn't bear the thought of any of us having to endure such pain and suffering so He willingly endured it for us.

That's basically it for now. I'm heading back to the hospital to sit with Ned and see if they have gotten the results from the ultrasound of his head or his chest x-ray yet. I will keep everyone posted. I appreciate your prayers and don't know how or if I could begin to handle this without them. I heard a sermon online today which really spoke to my current situation. Here's the link:
http://www.elevationchurch.org/media/player.php
(Then click on "The Method and the madness of God") It's a great sermon about the way God works in our lives and through us. It gave me great reassurance.

I love you all!
Betsy, Travis, Jack & Ned

Travis heading back to C-ville for a few days

2008-01-27T17:53:00.000-05:00

Betsy just left me at the Ronald McDonald House to go see Ned and meet her college roommate at the hospital to let her see Ned. I am getting ready to pack just a few things up as I am going to return to Charlotte tomorrow morning to go back to work for a few days, then will join her at the hospital to see him before I leave for a few days. Ned is still stable, and the great doctors here at UNC can't really tell us when the heart surgery will be yet, and Betsy has convinced me that she will be OK here for a few days without me hovering over her, trying to carry her bags, and drive her around. It really pains me, and scares me, to leave, but my vacation time at work will probably be put to better use a little further down the road. Work has given me pretty much all the unpaid time off I need, but everyone knows how that could turn out! While Betsy and Jack went to bed last night, I stayed up and did some laundry here at RMH (b/c all my Duke shirts were dirty!), and chose to do some Bible study and reading as opposed to zoning out in front of the TV in the den here. Isn't it such a blessing when we give our time back to God! I'll have to say my prayer life has really come a long way since all this started. He reminds me again and again that he will do whatever I will allow Him to do. Anyway, Christ really spoke to me during that time, and I wanted to pass along some scripture he directed me to while I was studying and praying. It was so strange because one of these scriptures I have had posted on my monitor at work for years, and I pretty much read the words every day, but I REALLY read them last night. I was sitting at the table in the kitchen at RMH just flipping through the Bible thinking should I read ahead of my Saturday morning Bible study in Genesis?, or should I finish where I left off in Job?, or should I read this or that, and God pointed me to Isaiah. I read the first 8 chapters, where God is really warning them of the things to come, and how wicked they had ended up being. I started feeling like, God, I know I've sinned in my life, and I'm still sinning even today, please don't hold that against little Ned. I ended up in chapters 40, 41, and this is what I ended up claiming for my SONS. My prayer is that it will comfort those of you reading this with what ever is going on in your life, as much as it has comforted me. Isaiah 40:31 says "But those who wait on the Lord will find new strength. They will fly high on wings like eagles. They will run and not grow weary. They will walk, and not faint." I could just imagine how I will feel when the good Lord finally allows us to bring that little boy home, and how I will feel when he and Jack and Margaret are finally together and probably fighting like siblings do. Even though we all sin and fall short of what He wants us to be doing, he forgives and forgets, and is ready to bless us so powerfully if we will only let him. The next verse I claimed for Ned is Isaiah 41:9-10 that says "I have called you back from the ends of the earth so you can SERVE ME. For I have CHOSEN YOU and will not throw you away. Don't be afraid, for I am with you. Do not be dismayed, for I am your God. I will strengthen you, I will help you. I will uphold you with my victorious right hand." These words from God are going to be plenty to allow me to be at peace with leaving my wife and child here. Plus, He has already blessed us with Jack waiting for me at home, and so many family and friends.

I just want to say the most sincere thank you I can to all of you for your emails, comments on this blog, and phone calls. Sometimes I feel like Betsy and I are fighting to see who can be the first one at the laptop when we return from the hospital to see all the comments and emails you guys are sending. God has also blessed us with so many family and friends that actually live right here in Chapel Hill, Durham, and Raleigh, and I want to say thank you to ya'll too, for making us really feel like we can call on you for a meal together, a chat, a visit, or even a place to sleep at night. Thank you, thank you, thank you.

I'm going to quit now. Betsy will be back to confiscate her laptop from me, and I'm sure post another blog to update everyone on Ned's status, and post her own highlights from her time with our Lord. Please continue to pray for our little boy, Jack, and Betsy, as well as for Robin, Greg, and Margaret, Linda and Billy, who have also turned their lives upside down to help us. Who knows, maybe we'll be finished with our house soon, and we'll have somewhere to bring little Ned home to!

In Christ,
Travis D.

After Much Delay....

2008-01-26T15:15:00.000-05:00

I apologize for the time delay between the last post and this one. I typically try to post at least once a night, but Jack was up here with us last night and that kinda threw a wrench in things.

Ned is still doing very well. They believe he will be completely off all of his blood pressure medications by this afternoon. He is tolerating the medication decreases really well so we've been very blessed by not seeing any major changes in his stats in the past two days following his surgery. The neonatologists thought they saw a bit of bowel back up in the chest cavity which would mean that his diaphram patch had come loose, but the surgical team has looked at the x-ray and firmly believe it is the angle of the x-ray itself. They seem very sure that there is no way the patch has been compromised as they felt they had plenty of tissue to which it was adhered. They will continue to monitor it to be sure, but I'm just praying that this will prove to be a non-issue because that would mean another hernia repair surgery. Please keep this in your prayers.

They said this afternoon that they expect that the cardiologist will perform Ned's heart surgery either next week or the next. They are still waiting to perform another echocardiogram to look at his heart now that all his stomach contents are out of the way. There is some chance that the aorta may be seperated rather than just a narrowing which would make the surgery a little more complex. Dr. Adamson (the pediactric surgeon) doesn't think that is the case and we're basically hoping that the less invasive heart repair will be an option.

Now that Ned has gone through his first surgery, he is much less sensative to light and sound. I can now go in and talk to him without causing his blood pressures to drop dramatically. Yesterday, while I was visiting, I was singing to him and the Lord really revealed something to me. I was singing:

Lord, you are, more precious than silver,
Lord, you are, more costly than gold,
Lord, you are, more beautiful than diamonds,
and nothing I desire compares with you.

For some reason, the end of that song really hasn't ever resonated with me, but I am coming to an understanding that getting what I want from God isn't nearly the blessing as getting closer to God and gaining a better understanding of his character.

We also met with the geneticist yesterday who wanted to look at all the congenital defects to decide whether or not she thought they were indicators of a much larger genetic disorder of some sort. After going through our history, she said she didn't see any markers for a major disorder that could make it impossible for Ned to recover from the defects we are now aware of. She couldn't be sure that he wouldn't have something that may cause him to be developmentally behind, but that isn't my concern. I understand that I will praise God to be allowed to raise Ned with whatever gifts He has blessed him with. So, for me, just knowing that there wasn't some major disorder that was going to make survival basically impossible for him was a HUGE blessing for me!

Several months ago, God revealed to me an application for a verse that made so much sense to me and has helped me so much through thinking about both Ned's repair and the general disarray our family is experiencing. Jack's behavior is terrible....I guess everything in his world is completely upside-down and he's really pushing his limits and being as ugly as he knows to be. I feel really guilty about leaving him to cope with all of this on his own. But there is a verse in Revelations (I'll look it up later and give it to you, but my computer is really slow right now) that talks about how God stores up our prayers and they are like incense to Him. I always thought that was such a strange concept, but as Jack got older, I understood more. When he would be playing and tearing his toys apart, I would notice him trying unsuccessfully to put them back together. I knew he would eventually get frustrated and bring them to be completely distraught and crying. But, I loved that he knew I could and would fix it for him. I loved that he trusted me to fix his most overwhelming problems. And what seemed huge to him in his world with his little understanding, was a simple task for me to correct for him. I think that is why our prayers so please God, fixing them for us is an easy task and he loves to help us in our time of distress knowing that we have brought our biggest concerns to His throne believing He can and will fix them. So today, I know that God can not only repair Ned's little body, but he can also easily help Jack and Margaret find some comfort, peace, and normalcy in our new, chaotic environment. I'm taking comfort in that today.

That's all I have for now. Everyone's prayers and emails have been so uplifting and the amout of support and love we have received has been tremendous to say the least. Travis and I are completely humbled that so many people have prayed in earnest for our child. Individuals, groups and entire churches whom we have never met have contacted us to let us know that they are fervently praying for our little Ned. I thought this little website would help some people know what was going on with him, but I never could have dreamed that God would use it in the ways that He has....ways only He can. As always, He gives us more that we need or expect and all his for His glory. I have received lots of emails concerning my faith and I just want to say that my faith has been made strong because God has shown Himself so clearly and that it was in my humanity and weakness that He was able to be so mighty in my life. He has planned all the days of my life and how He has chosen to work in my life is in no way an indicator of anything I could ever be outside of Him. I will tell you all soon how and when he started preparing me for this journey....looking back it is all so very clear to me now, but I believe I'll have to wait till tomorrow. Some of my Sunday school class is here to see Ned and I need to go meet them....how blessed am I that a group of college kids would drive 3 hours to come look upon my child for whom they have all prayed! God is so good!

Betsy, Travis, Jack & Ned

One Surgery Down!!!

2008-01-24T20:59:00.000-05:00

Okay....this is going to be short and to the point. We have eaten or slept or seen Ned yet so this entry will be straight medical info. Surgery is over and everything went fine. They were able to remove his stomach, spleen, bowel and liver from his chest cavity and put it back where it goes in the abdomen. During the surgery they removed his appendix for extra space and something on his bowel know as a meckel's diverticulum. Quick explanation: All fetus have the meckels diverticulum during the first trimester, but in 2% of the population, it doesn't dissolve. It doesn't inherently cause any probelms, but later in life it can begin to produce acid in the lower bowel where your body is capable of handling such high acids.....so, they removed it. There was also an area of the bowel that had been kinked up since everything had floated out of it's normal position. The area that was kinked had gone without blood flow and after they unkinked it, the tissue never returned to normal. So, they took out that small area (about 2 inches). They didn't sew the two pieces of bowel back together yet due to the complications with doing that while there was swelling the bowel. For now, Ned will have a little ileostomy bag and they will perform another surgery in 6-8 weeks to put that back together. The good news is that the kink was pretty far down on the bowel track and shouldn't affect his ability to digest and intake nutrition!!

They put in the gortex patch and there was actually a little flap of diaphram that was rolled up near his spine which gave them something to sew the patch to in that area which is the most critical part and normally the most likely area to reherniate.....so that little flap was a huge blessing. God held him completely steady during surgery...his vent settings remained the same and he didn't need any blood transfusions so they expect his recovery to pick up where it left off!!!I think that is all for now....or at least the highlights. They are changing out his fluids and doing some x-rays to look at his new anatomy, then we'll be able to go in and see him!

I'll update better in the morning. Thank you all for all your prayers. There has never been a day when I needed them more! Let's just pray that little Ned's lungs will really start to develop and take off. Dr. Adamson said that he had about 50% of his left lung so we're really praying that all his lung will really be able to function and fix all his pressures so he can get off those meds pretty effortlessly. Okay....this was pretty long....love you all!

Betsy, Travis, Jack & Ned

Little Ned is in surgery

2008-01-24T17:19:00.000-05:00

Well, we sent Ned off to his first surgery about 2:30 this afternoon and we expect it to be completed around 8:30. When I say his first surgery that is now because about an hour before they decided to repair his hernia today, the doctors let us know that they think that there is a narrowing in one part of Ned's aorta (which is heart vessel). They expect that it will need surgery as well once he has gotten stabilized following his hernia repair. All of this news was a bit overwhelming for me to be honest. I was already feeling a overwhelmed by the hernia repair today....I really could have waited until we made it through one surgery before we started discussing another. However, I'll have to say, the surgeons and surgical staff here have made us feel as confident and comfortable as possible. I am so tahnkful that God led us to this place to go through this.

For me, today, has been the most frightening part of this journey since his initial diagnosis. I'm not sure why, exactly. It could be partly hormonal, but something about knowing they are taking my son's little body off to cut into it was just difficult for me accept today. It isn't really a fear that God won't protect Ned through the surgery, I guess it's just hard for me to continue to hand him over when he's now here and I can, or could, have my hands on him. Please pray that I will find peace and comfort in the modified version of motherhood I am playing at this time.

Please keep Ned and the surgical staff in your prayers this afternoon. I have gotten somewhat caught up in trying to make sure that I pray for every little detail of the surgery, but the truth is that I don't know enough to try to control the details of the surgery through prayer. So, now I am mostly praying for God's presence to hover in the entire operating room. I have been thinking about how when Jacob was wrestling with God he refused to let go until God blessed him. That's kinda how I feel this afternoon. I am completely exhausted and I want to give into my fears, but I am hanging on to God and refusing to let go and until I receive the blessing of restoring my son.

I'll keep you posted. Love to you all!

Betsy, Travis, Jack & Ned

Big Day!! Please Pray!!

2008-01-23T23:40:00.000-05:00

When we arrived to the NICU this morning, Ned was a little out of sorts. They weren't exactly sure what had caused him to de-stat, but his favorite nurse, Amy, worked diligently to get him back on track. It really hurt my heart to see him so flustered and agitated, but it was quickly resolved.

Shortly thereafter, the NICU took a power hit and all the respirators went dead. The nurse had to run in and swap over to a hand vent for probably a minute and a half. I was completely dumb founded. All I could think was....this shouldn't happen, what is wrong with the backup power systems here and how can I fix it? (For anyone who doesn't know....I sell back-up critical power supplies)!? My mind was completely reeling! Shortly thereafter, during rounds, one of the doctors accidently turned off the overhead light. Needless to say everyone jumped up in a panic.....so it was a little tense to say the least. Very eventful morning.

The doctor's discussion during his morning rounds was pretty much the same as yesterday...which was good. They had basically decided to leave his settings alone. They made very few changes because they were happy with his critical stats. There was an intern who had to give Ned's report this morning in front of all the medical staff and us. I felt terrible for him! I guess that's just how it goes in a teaching hospital, but I can't imagine being called out for diagnosis and treatment procedures in front of such a large group and the baby's parents! He was kinda pitiful, but very kind.

The big shocker came today when we went back down to visit Ned prior to my discharge. We spoke with Dr. Adamson, one of the pediactric surgeons and he said that if Ned remained stable through the night and there weren't any scheduling conflicts, they planned to perform his surgery TOMORROW afternoon with a backup plan for Friday. I felt like I might seriously be sick. I knew surgery was definitely coming and I do want to get past it, but I just had next week in my head and "tomorrow" came very quickly. I'm honestly not prepared for it, but I'm working on it. I just thought I would have more time to get comfortable with the whole situation and to spend more time in God's word studying prior to this move. I feel somewhat disconnected from being in the hospital and going back-and-forth to the NICU. I was really anticipating some downtime where I could get back to a place where I felt like God was guiding me. But, that just may not be the case so I'm planning on overloading on some Bible in-take tonight in hopes that God will show me His direction and give me peace for tomorrow.

We also had some stress when we visited the NICU tonight. They are still planning for surgery tomorrow, but he had some destat issues tonight as well....still the doctors didn't seem concerned. Ned is highly sensitive to noise and too much touching. His night nurse is a little OCD about the tubes. She doesn't want any to be crossed, so when she gets there, she goes through about a 45 minute routine of uncrossing all the wires. There was also another babe who was really unhappy and letting everyone know about it. Between her touching and his crying, Ned let everyone know he had experienced all he could take. Luckily, one of the neonatologist was standing close by and got him right back on track. We got him in some little ear muffs to drown out the noise and he was able to keep his stats up. THEN, you wouldn't believe, but he woke up. I mean, completely awake and responsive. I was so thankful to see his little eyes, but he was clearly not sedated enough considering he had just had the melt-down and was now wiggling around and staring at me. His nurse acted like she wanted to see how he did, but he didn't seem all that excited about having that vent tube down his throat so we of course asked her to quickly sedate him again! It was wonderful to see the life in him and feel the strength in his arms. The doctor on duty tonight said that on a scale for 1-10 (10 being the best), Ned was an 8 considering his condition.....everyone is so shocked by how God has delivered him!

So....tomorrow morning, we'll find out a definite on the surgery. Please be praying for Ned and for Travis and me. I am praying that if tomorrow is not the day God has determined for his surgery, that I won't be disappointed by any setbacks tonight. We just have to keeping trusting the Lord and knowing that His love for us, and Ned, is far greater than our love for Ned......that helps me keep in perspective how precious we are to Him. I am just praying for the surgical team, that their hands will be lead by the great physician and that God will grant them wisdom and discernment concerning my son. I am also continuing to pray that God will make himself known to people through this situation and that Travis and I will continue to make ourselves available to his calling....that we won't get too caught up in the medical aspect of this to a point where we can't hear His still small voice.

Love to you all.....please lift up prayers of miraculous healing!
Betsy, Travis, Jack & Ned

Betsy & Travis heading to Ronald McDonald House

2008-01-23T14:20:00.000-05:00

Everything with Ned is about the same now. Betsy and I were in the NICU for several hours this morning and sat in on the doctors' round-table discussion of Ned's progress and statistics, and overall, they are still happy with his status right now. It's hard to imagine that he's already 2 days old! God has blessed us with a healthy mother and a sweet baby with positive readings so far. Betsy and I are going to be heading back down to the NICU here shortly, then she will be discharged and we will go to the Ronald McDonald house right beside campus to begin our stay there. We are so thankful for resources like that, and especially for all your prayers so far. Please continue to pray for little Elijah Ned. Betsy will update blog later tonight I'm sure.
God Bless you all,
Travis & Betsy, Jack & Ned

No News is Great News

2008-01-22T20:44:00.000-05:00

I am happy to report that there is very little to report! Travis and I went down and joined the NICU staff during doctor's rounds this morning. ALL of the doctors were so impressed with Ned's stability. I was so proud during the meeting to be the mother of the "all-star". They decided to make a couple of changes to his medications: take him off some of the sedation drugs and just tweek a couple other things to really get some of his settings right on target. They also let us know that his little collar bone was broken during birth. I guess it's a good thing that he is on pain medication right now. He shouldn't feel anything and they say it will just heal itself.

Travis was hounded by the doctors for wearing his DUKE shirt to the rounds meeting this morning. I was so embarrassed. They said it could have been worse.....Maryland! I guess I'll have to decorate Ned's bed with UNC paraphanalia to make sure he gets the best care...I don't want them to hold Travis' shortcomings against little Ned.

If he continues to do as well tomorrow, they will start assessing him for surgery. It will be pretty unscheduled. As soon as they think his stats are perfect and stable, surgery will be a go!

We have been blessed to have been prayed for by so many people and entire congregations....people we've never met and may never know until we know them in eternity. Until that time, I thank God for all the time and love other people have poured into our lives.

I told Travis tonight, someone told us that when she prayed for us, she envision Jesus hovering over us and protecting us. I think that is so funny because when I have prayed, I have envisioned myself walking behind Jesus with my face dug in his back...you know, like you would go through a haunted house, clinging to someone else, too afraid to look for yourself. He hasn't led me astray even though I had no idea where he was taking me. He has brought us to a place of real surrender and in that we have found blissful peace.

I'm adding a couple of pictures although I know he hasn't changed much....he's still a cutie!

We formally met Ned!!

2008-01-21T19:33:00.000-05:00

We finally got to go down to the NICU about 5:30 to see our son.....it was the most long awaited, anticpated introduction of my life. He and I had a brief encounter this afternoon after he was born. We held hands and he refused to let go....another Mama's boy....I love it!!! But tonight, I finally got to tell him some things that I have been thinking about for 6 months. I told him about how God was holding him and caring for him and how blessed he is that the Lord chose him to reveal Himself to others at such an early age. I told him how I had such a difficult time learning this lesson, but he didn't have to fight too hard because God was holding him and his future was secure in Him.

I know Travis let you all know that he cried at birth which for us was amazing (totally God) since they had told us not to expect a cry at all and that he would be blue and may not be able to be intubated at all? BUT, he let out loud belly cries and it blessed my soul. I'm pretty sure I kept saying "Thank you Jesus" out loud in the delivery room. If I had been in a better position, I think I may have gotten up and danced a jig while I said it.....completely unashamed!! He was a very normal 7lbs and I'm not sure of his length, but he looks comepletely proportionate. I have counted each of his beautiful fingers and toes and there aren't any extra or abnormally shaped. Again, it was difficult for me to trust God's provision when so many negative reports kept coming in about his conditions, but God has certainly shown himself today.

So....when we got to the NICU, the doctor on duty gave us a quick update and the first thing he noted about Ned was that he was extremely strong. So strong, in fact, that they had to sedate him tonight because he had pulled out his breathing tube! I was so proud! They also said that they had done lots of testing and his heart showed no anomolies. The doctor went on to tell us that he had a good bit of bowel in his chest. Now while this seemed like he was delivering bad news, he was actually telling me of God's first big miracle for Ned. In response, I asked if he hadn't seen most of his liver in his chest. The doctor said there may be some liver up, but not that much.

WOW.....when we went to the Children's Hospital of Philadelphia, they told us that his stomach was up, his bowel was up and his liver was up. I knew that the liver being up was a worst case senario because the liver is such a dense, hard organ that it really prevents any lung from forming against it, but I could clearly see in the MRI images that at least 3/4 of his liver was in his chest. When we met with the specialist there, I asked if it were "possible" that the liver could descend back into the abdomen. They assured me that it wasn't possible for that to happen.....but, ALL THINGS are possible thru Christ!

So, we went in to see little Ned and he is absolutely beautiful!! Even with all those tubes, he was a living doll! He has a head full of curly blond hair. Right now it's still kinda matted to his head, but once they wash it, I think it will be quite the boufant hair-do. Although he was sedated, he was still repsonsive to my touch and voice.

I have been held by all your prayers in such a supernatural way that I couldn't begin to put into words. Please keep praying that we will continue to place our trust in God's soverignty. I am also praying that God will hold Ned in His arms the entire time that he is alone in his bed and that the Holy Spirit will hover over his little bed filling his little body with the grace and peace that surpasses all understanding. As always, I am praying for complete healing....I put my hands on his little chest and asked God to fix everything and to give the doctors discernment and wisdom. We're also praying that in whatever capacity God chooses to continue to use our family, we will be open and obedient to his direction.

As for his surgery, we don't know what to expect as far as a time-frame. The first 48 hours are considered a honeymoon period. After that, they will want him to be able to remain stable for a time period then they will schedule the surgery. For now, we'll just rest in the place where He has us for the moment.

I love you all so very much. You have sustained us through your prayers and love in Christ!

Betsy, Travis, Jack and Ned

Elijah Ned Dellinger has arrived !!

2008-01-21T16:02:00.001-05:00

Elijah Ned was born today at 12:53pm, and the first thing he did was cry! What a blessing it was for us to hear that come from his little mouth! He weighed 7 lbs. even, and looked great. When he was born, they got him intubated successfully, meaning they have a tube in his lungs to assist in his breathing. The immediately took him to the NICU, where they have been working with him since. We hope to be able to see him soon, and get some kind of status soon, but we are just waiting on praying right now. I just wanted to get something on the blog b/c we know people are checking it. I'll update it again as soon as I can.

Travis

Couple Little Bumps in the Road

2008-01-21T00:29:00.000-05:00

Well, we're finally here at UNC hospitals and we've gotten started on this induction. We weren't sure if Travis was going to be able to make it. He had a fever Friday and Saturday night and the hospital staff asked him not to come until he had been fever-free for 24 hours. So....Mom and I drove up this afternoon, but when Travis' fever didn't return this evening, he came on up.

They contemplated putting off my induction until tomorrow night, but decided to move forward. Apparently the NICU is pretty full right now, but the neonatologist came by and said that they were going to re-work somethings on their end (I guess they'll transfer some babes to the PICU). I assured him that it wouldn't be a big deal at all for me to wait a day, but he said that wouldn't be unnecessary. I felt very comfortable with the situation after talking with him so Baby Ned will be here tomorrow!!

At the moment, they're just trying to dialate me a little more and they expect to start the meds to really crank up the labor sometime in the "wee hours of the morning"....I'm not sure exactly what time that will be???

I still feel much at peace even though I thought I would be a nut case by now. Please keep this entire situation in your prayers. I love you all dearly!!

Betsy

Great Expectations??

2008-01-19T14:12:00.000-05:00

Before I begin, I'll go ahead and apologize for the length of this post. I have just had so many things revealed to me this week and I feel like I have to share the things I am going to write today. I have been so grateful that as Ned's birth draws close, God has gathered me unto Himself to show me that He is soverign and in control. Such peace that has brought to my life.

Thursday night I was awake off and on all night just praying. I'm not sure if any of you ever check the links for the other CDH babies, but I knew that Baby Liviana should have made her debut into the world and I had her and her mother Amy on my mind. I was, of course, also praying for Ned's healing. While lying there, the Lord said, "Betsy, you pray for healing, but you aren't really expecting me to heal him." My response...."Oh yes I am!" But God said, "Betsy, you haven't packed one thing for the baby to take with you to the hospital. You don't even have your infant car seat in the car to bring him home. If you're expecting miracles, you're very unprepared for it". I love it when God calls me out with such honesty and boldness.

I have a wonderful lady in my life who is my Bible teacher. I immediately remembered something she had taught me this past summer. We were studying in Genesis 22 where Abraham was taking Isaac up on the mountain to sacrifice. As they were leaving to head up, Abraham told his servant to stay with the donkey, he and Isaac were going up to the mountain to worship and he said WE'LL be back. He expected God to provide a replacement....the ram in the thicket. He never thought that God wouldn't show up and pull through for him....that's what made his faith so admirable.

During that time, my teacher's husband was having some medical issues which prevented him from being able to plant his tomato garden. He had asked her to plant and tend the garden for him. She agreed, although she knew nothing of gardening. She prayed over the garden and asked God to help her in making in fruitful. She said when she first went out to the garden to pick the tomatoes, she didn't take a bucket. She assumed that there couldn't be more tomatoes than she could carry by hand, but as she started reaping God's harvest, she soon saw that He had supplied in abundance....That's His nature. She had to return to the house to get a bucket to bring in all God had given in response to her prayer. Her point then was that she went to God not expecting and that's how I had been taking my requests concerning Ned's healing. (Psalm 5:3: In the morning, O Lord, you hear my voice, in the morning I lay my requests before you and wait in expectation.)

So Friday, I got up and went to my final doctor's appointment. It went very well, in fact, Dr. Niblack said he looks great! I'm just so thankful that there haven't been any other major problems detected like with his heart or anything. Each bit of good news is a blessing. I then stopped in to pick-up Ned some little onesies. I know this will be the first actual clothing they'll allow him to wear in the hospital, yet I had none. I had gone to TJ Maxx so it was kinda hit-n- miss and I could only find one onesie for a boy. It was blue with thin white stripes and it says, "apple of my eye" on it. This spoke volumes to me because for Christmas, Travis and I had given our Bible teacher a gift and on it was written Psalm 17:8, " Keep me as the apple of your eye; hide me in the shadow of your wings.".....it was PERFECT. Just a little glmpse of God to build my faith and give me assurance of His power.

Today, I sent Travis to locate our infant car seat so I would have a bucket in which to carry home my little miracle and I am spending the day washing up some blankets, my onesie, and some stuffed animals in that wonderful smelling baby washing detergent....now I'm expecting!

We will leave for Chapel Hill tomorrow to begin the induction tomorrow night for a scheduled delivery date on Monday. I am praying that not only will God reveal himself through Ned's healing and also that Travis and I will allow God to work through us in the situation to serve His purposes and plans of which we aren't even aware. The following verse has been my most heartfelt prayer this week:

"I eagerly expect and hope that I will in no way be ashamed, but will have sufficient courage so that now as always Christ will be exalted in my body, whether by life or by death"
-Philippians 1:20

This may sound weird at first, but......

2008-01-11T21:53:00.000-05:00

I know this isn't going to come across just right at first, but bear with me a moment. In many ways, I wish everyone had an opportunity to go through a rough time like this just so they could see all the good and all the love in others that I think we often times overlook. If I could publish all the wonderfully moving emails, cards and words of encouragement I have received over the past 5 months, it would be so much easier for everyone to understand how it has shaped my attitude and my faith.

I am so reminded of the story of David and Goliath when the Philistines told the Israelites to choose "one" of their soldiers to send down to fight the battle. When facing that giant individually, no solider was up to the challenge, but had they stood, shoulder to shoulder with their faith in God, they could have easily defeated the Philistines. I know that if I had felt at any time that this battle had been mine alone to fight, I could never have managed. But the truth is that I haven't even had to walk this journey, I have been completely carried through it. Thank you all so much for standing beside us through this!

Now...on to the medical update for the week. Thankfully, there has been little to report. I had an ultrasound Monday in Kings Mountain. Everything remained to look fine. The only interesting thing from that visit was that little Ned was holding up his little hand with three fingers up like he was at a rock concert....I think we may have a little rebel on our hands! Right now....it was really cute, but I'm not sure I'll be thinking the same thing when he is 16?

We also had a visit to Chapel Hill this week. Everything looks good for a delivery date of January 21st! Our plan is to go Chapel Hill to begin induction on the night of the 20th and deliver the next day! So, in a week from Sunday, I guess we'll be heading that way. It seems so surreal now that it is so close.

Please be praying for our medical staff. I am praying now that God will ordain the doctors and nurses who will be part of our team that day. I am also praying that I will be able to hand my child over into God's hands immediately so that I will be able to relinquish that "mom instinct" to cling to my baby. I am praying for peace, that our family will be strengthened during this time. At night, when I go in to pray over Jack, I am praying that even he will gain some sort of understanding or insight into the character of God at some level during this time. I'm not sure what he could be grasping, but I pray the Lord will use this to begin drawing Jack to Him at an early age. In the same way, when I talk to little Ned, I tell him how very lucky and privileged he is that he is going to be able to learn something at birth that it takes most of us a lifetime to understand.....that our strengths and accomplishments are brought forth when we simply rest in the arms of the Lord.

That's all I have for now. I'll be teaching Travis how to update the blog this week so if there are some weird random posts...we're working though some kinks.

Love you all!
Travis, Betsy, Jack & Baby Ned

And He Shall Be Called.....

2008-01-07T09:49:00.000-05:00

We have finally decided on a name for this little one.....as if we have much more time to think about it? We're going to name him Elijah Ned and call him Ned. We've been really sure about the Ned part for some time, but picking a name that goes with Ned is really difficult. I always thought it was weird that my grandfather (whose name was Ned) didn't have a middle name. His name was just Ned Beam, but after trying to put something with it for so long, I completely understand why my great-grandmother opted to just go with plain ole Ned.

I haven't posted in some time and there are several reasons for that. Other than Christmas and the holiday schedule, we have been infested with the stomach virus at our house. Someone in the house has been sick for the past two weeks. It has finally gone through everyone so I think we should be clear now:0)

I also haven't really received any big news at any of my appointments over the past several weeks....which is always a good sign. I went to CMC last week and had an appointment with Dr. Stubbs. Not sure if I've ever mentioned it, but he was the first specialist we saw after the original diagnosis at 18 wks. During our first visit with him, he told us very little and then several days later he faxed a report to me at work diagnosing Ned with a severe heart complication and a genetic disorder basically saying he wasn't capable of surviving. Both of those diagnoses have either been ruled out since then or multiple other doctors have said that they don't see any evidence to come to such conclusions.

Anyway, I was much more prepared for my time with Dr. Stubbs this time around I guess because I knew what to expect with his bedside manner and such. The appointment was really weird and uncomfortable as expected....he kept asking if I had been going to doctor's appointments? He also called both Kings Mountain and Chapel Hill to make sure he was comfortable with the level of care I was receiving??? I left there so thankful that I had known early on that he and I weren't compatible. I felt sure that this pregnancy would have been much more difficult and stressful had I remained under his care.

The only real information we received at the CMC appointment was that some of the umbilical cord is looped around the baby's neck. When I first heard this I felt somewhat panicked, but all of my doctors have assured me that this actually happens all the time and that lots of babes are born with cording around their necks? I am just praying that the cord doesn't tighten during delivery causing complications that will lead to a c-section.

Other than that, my fluid levels have come down some and leveled off- still high, but not increasing. Baby Ned continues to practice breathe all the time which seems great to me since I've always heard that "practice makes perfect". His growth has continued on the same "normal" growth curve which he had earlier fallen off of for a short time. And still no sign of hydrops. While all of this seems uneventful, for me it is solid evidence that God's hand is in control of my situation. According to Ned's diagnosis regarding the severity of his birth defect, he should be having a very difficult time processing fluids; however, he seems to have mastered it at the moment. It doesn't mean very much from any medical perspective, but it does show me that God's healing powers aren't limited by our knowledge and our abilities.

Travis and I will head back to Chapel Hill on Wednesday for my last OB appointment there. I guess I'll get detailed instructions about what to expect on the induction date set for 01/20 or 01/21. I'll keep everyone posted on that.

Again, I need to say that I am completely overwhelmed and blessed by the amount of prayer and support that we have received during these past 5 months. The effects of such prayers have been so evident in my spirit. Your faithfulness has given me a peace and a comfort that I never thought I could have experienced facing this unknown.

Even now, at night, I find myself awake for long periods of time just praying and seeking God's will and purpose in all of this. And in the dark, lying there, I know that we are being lifted and held up by the prayers of others and I am just so very thankful for the place that God brought us to and the people that he placed in our lives for this moment.

I think back a lot to Abraham when he was wanting to ask God that if Lot was the only righteous man left in Soddom and Gemorrah, would God spare him. He never really asked God for what he wanted. He narrowed down from like "if there are 100 righteous" to "if there are 10 righteous", but what he really wanted was to say, "God, if Lot is the only one, will you save him," but he never asked......God would have assured him that Lot would be spared.

I have kept this in my mind during this pregnancy knowing that I am coming fully to the throne of God seeking what it is that my heart desires. I originally began praying for little blessings like, "please God don't let this baby need ECMO" or "if you'll just let his liver be back down so some more lung can form". But then I got real and asked God to please heal and restore my son's little body. I don't care how he does it or what kind of medical challenges we have to endure to reach that point, but what I really desire is to bring my son home whole. I would, of course, love a medical miracle, but my desire is not that I don't have to suffer some through the process, but that my child be healed. In all honesty, that is my only prayer request at this time.

Much love to you all,
Travis, Betsy, Jack & Baby Ned

It's Like Christmas Morning

2007-12-21T19:01:00.000-05:00

That's how Travis always terms unexpected surprises.....the really good ones that warm your heart even though they may not be that big. It makes me think about how I would sometimes get some things in my stocking that I hadn't asked for, I hadn't even ever thought that I wanted them, but they were my most favorite gift that year. That's kinda how our doctors visits felt to me this week.

I guess when you're expecting bad news, just a little good news is great!! Because my fluid levels had gotten significantly higher last week, I guess I just expected that trend to continue and I was fully expecting that the baby would show at least some signs of hydrops (again meaning that he would be retaining fluid around his heart, abdomen or brain). However, when we got to our appointment at CMC on Tuesday, the baby showed no signs of hydrops and my fluid levels had maintained where they were last week if they haven't dropped a bit. I was so very thankful as God answered some very specific prayers I had listed last week.....again He shows me how faithful He is when I lay things down at His feet. On top of that, the baby's growth curve had jumped back up to normal and if he continues at this rate he should be around 8 lbs. at birth (assuming we make it till January 21st)!!! The ultrasound technician also said that the baby had tons of hair....I think the term he used was "dread locks"?! That came as such a surprise to both Travis and I because he looks "exactly" like Jack and since Jack didn't have any hair until he was almost two, it's really hard for me to envision this little version of him with a Bob Marley wig. I guess we'll just take the technician's advise and take a brush to the hospital with us?

This week was really great news for us. We know that the baby's condition is severe, but any other development that shows signs of normalcy gives us great hope. As I have mentioned before, there was a time when I knew that the Lord was taking us into a very dark valley and I had to come to a point of surrender where I was willing to say, "I will follow you through the deepest, darkest valley even though I don't know where we're going or what our next step will bring. I will hold fast to your guidance and I am believing that you will bring us out on the mountain top". This week for me was a glimpse of the mountain top. We still may be a long way off before we reach the top, but when we get there, we'll know that it was only by the grace of God and through his miraculous nature.

Have a very merry Christmas. May God bless your lives in a very real way during this time of year.

Loving you all!

Betsy, Travis, & Jack

Somewhat Expected Complications

2007-12-17T15:09:00.000-05:00

I have fallen a bit behind in posting last week's blog. I had promised myself to keep this current, but I just needed some time to process the information I received last week. It wasn't all that upsetting, but it just took me some time to put it all in perspective.

Before I get into details, I want to thank everyone who has emailed me with prayers and well wishes. I apologize that I haven't had a chance to respond to them all yet, but I am saving them and I will eventually get around to thanking everyone personally. Your concerns have all been very appreciated.....you'll never know how they have lifted me up and given me hope!!

Last week was a (2) visit week. The first visit went very smoothly....stress test showed that heart rate and movement still appeared normal. The baby still looked great during my second appointment for the bio-physical profile. The only concerning thing was that my amniotic fluid levels had risen from 26cm the week before to 34cm this past week? We expected to potentially have this problem, I was just hoping they would fluctuate back and forth and the increase would be slower.

What causes the fluids to rise? All babies practice breathing while still in the womb. They inhale amniotic fluid and it processes through their bodies and is then excreted back into the amniotic sac. Because our baby's organs are all pushed to the right side of his body due to the CDH, it is more difficult to process the fluid and the whole procedure is much slower than normal. My body then generates more amniotic fluid to compensate for what he has ingested, then he passes some and my fluid levels rise. It's a vicious cycle of both of our bodies doing what they are supposed to do without knowledge of how the birth defect is throwing a wrench in things. On the positive side, I like to think he is in there really practicing his breathing so that what little lung he has developed is very ready to work hard!!!

The main concern with the fluid levels rising too much is that it will cause me to go into premature labor or that the baby will develop hydrops. What will most likely happen is that they will send me to Chapel Hill to have some amniotic fluid drained unless my levels go back down. We'll get a new reading on this tomorrow when we go to CMC. They will check my fluid levels as well as for hydrops. Hydrops is when the baby is unable to process the fluid and it begins to hold fluid around the heart and abdomen. In the case of hydrops, they'll decide whether to attempt to drain the baby's body with an injection or to deliver early. With all that said, I'm really praying that my levels will drop a bit at least for a couple more weeks. His little lungs need all the development time they can possibly have and I really want to be home with Jack for Christmas!

Now, having caught everyone up on the medical viewpoint, I'd like to share what the Lord brought to my mind this week. I have met so many wonderful people through this whole experience. Many of them have been very strong Christians in whom I have found much strength and wisdom. I really got that on my mind in the bed Friday night and I was reminded of 1 Kings 18. I remembered that during the time of famine under King Ahab, the prophet Obadiah had lived in King Ahab's castle as part of his court and, therefore, had been unaffected by the hunger the famine had brought on the land. Obadiah had taken 100 other prophets and hid them away in a cave so that King Ahab could not find them to harm them. Obadiah brought the 100 prophets food in the cave.

When I first studied this scripture, I felt sorry for the hundred prophets who had to hide away in a cave while lucky Obadiah got to live in the kings palace. But the more I thought about it, it was Obadiah who lived the more complicated life and he didn't know it. He had to live a lie in Ahab's palace every day, day in and day out sneaking food to the other prophets and attempting to hide his allegiances to God. Now, while the hundred prophets didn't have much from a world perspective, they lived in the protective environment their Lord had provided them. He was also providing them with food....everything they actually needed. Meanwhile, they lived all together in a place where they could share with one another about what God had done in their lives and what he was teaching them on a daily basis.....what a wonderful place to live.....they were living in their King's palace.

As I have met these friends, I have found so many times that it's almost unbelievable that we were in some way connected or share some kind of a similar past history. It has given me some insight to how I believe heaven will be. For an eternity, we will meet and share with other Christians and through our common histories and experiences, we'll gain a better and better understanding of how God worked even through the difficulties of our lives for the good of his other children. I believe our understanding of how we are all interwoven will be overwhelming and it will give us more and more reason to praise him for his wisdom and sovereignty!!

I'll update you as soon as there is something worth sharing. Much love to you all-

Betsy, Travis & Jack

Answered Prayers

2007-12-07T11:36:00.001-05:00

Well, I had (3) doctor's appointments this week so I just waited to give an overview of all of the information we received rather than overwhelm everyone with too much medical information.

On Tuesday, I had what will now be a weekly stress test at Kings Mountain. He passed with flying colors meaning that his heart rate was stable for about 20 minutes and he's moving well....very frequently, in fact.

On Wednesday, we went to Chapel Hill. I was very anxious about this visit. I had prayed that Dr. Wolfe, the radiologist, wouldn't be there. I just hadn't taken to her bedside manner during my first visit with her. Travis said I shouldn't pray for people to be out sick, but I said she could be off Christmas shopping for all I cared. Well, she was there, but she didn't come in my room after the ultrasound....thank the Lord for the small prayers He answers. It relieved the whole day for me so much. The ultrasound shows that my fluid levels are somewhat high (which we expected to start at some point), but not at a dangerous level at this point, but there is no indication of hydrops which would mean that the baby was holding too much of this fluid and it would be building up around his heart or abdomen. Hydrops would be one problem we may encounter that would cause us to need to deliver early which we really want to avoid. The baby is also somewhat small for his gestational age. All the doctors assured me that it isn't at a dangerous level, but we are praying that his growth will pick back up to a normal rate. If he can continue on a normal rate from here and make it to 39 weeks, we expect him to weigh around 8lbs.....which would be wonderful!! They also noted that he was performing fetal breathing movements which is like "practice breathing". That was a very promising sign that he is getting whatever lung he has prepared to work.....very thankful for that news as well.

Also, I had discussed with the baby that I didn't want him letting the ultrasound tech look at his feet. Last time we were there, she had thought she saw and extra toe and although Dr. Wolfe couldn't confirm it, she presented it to us as if she felt much more certain that he had a genetic disorder. At that point, we had had about (6) ultrasounds and all had counted 5 fingers and toes. I chose to dismiss their diagnosis, but I just didn't want to go through it again with them. Regardless of what all they think is wrong with this baby, I want them to give him the best shot at survival. The more evidence that they can find leading them to believe his chances for survival are slim, I'm afraid they won't give him their best effort. So, when my little man kept kicking the ultrasound probe when she got near his feet, I knew he had understood my instructions.....just hope he'll keep listening as well.

On Thursday, I saw Dr. Chamberlain in Kings Mountain for my now weekly bio-physical profile. Much more of the same news except Dr. Chamberlain said that he thought the fetal breathing movements he saw were d*** impressive!!! I was so proud of the little monkey!

So, for the moment, the following are my main prayer requests:

1. Baby's growth rate will increase to put him back in the normal range
2. Amniotic fluid levels will remain within the normal range
3. Hydrops will not begin developing around the baby's heart or abdomen
4. We will continue to see God's hand in this situation so we can easily rely on and trust in Him
5. Pray for the other families whose children have already arrived and are fighting to get stabilized and go home. It will be a difficult Christmas for those still in the NICU. You can see the attached links to check out their progress.
6. Begin praying for January 21st- my scheduled delivery date. I am praying that I make it to that date and that God will restore my child to full health.

I'll at least keep everyone updated weekly (I hope)! Love to you all!

Uneventful Doctor's Appointment....Yeah!!!

2007-11-20T15:50:00.000-05:00

I had my first weekly visit with my regular midwife in Kings Mountain today. I was somewhat apprehensive since we have planned to leave for NYC tomorrow. Lots of normal readings.....measuring normal (which means my amniotic fluid levels can't be too high), no gestational diabetes, normal blood pressure and normal hemoglobin. These were test results that I would have taken for granted during my first pregnancy, but now I am so thankful to receive them!!

From this point forward, I will go to my regular doctor's office weekly and have ultrasounds scheduled for every other week either at CMC or Chapel Hill. For the moment, I'm just going to give God praise for the wonderfully uneventful visit today and focus on being Thankful.....what a fitting time of year to do so!!

I hope everyone has a very blessed and happy Thanksgiving.

November 19, 2007

2007-11-19T13:32:00.000-05:00

As most everyone knows, our unborn son was diagnosed on 08/27/07 with Congenital Diaphragmatic Hernia (CDH). We have decided to use this blog to keep everyone updated and informed on his prognosis. You will also find links to further information about CDH and the potential complications since it is a widely unknown birth defect.

As we have already been given a very grim prognosis by the medical community, we intend to use this site to glorify God by sharing the goodness that he shows us during this very dark valley. In some way, sharing gives me a sense of purpose in this and also serves as a reminder to me when things look really bleak how big God is and how faithful he has been to answer my prayers and meet my needs in the past.

Just for some background info- we met with a doctor in Charlotte after finding out about the baby's condition. The diagnosis and prognosis we received there was extremely grim and barely informative. So far, those were our darkest times (I'll share more from my prayer journal regarding this a bit later). Then we went to Philadelphia to the Children's Hospital (CHOP). While the dianosis wasn't much better, it was some better and we felt really assured about the information they were giving us. The test results seemed really conclusive.

Because the baby's condition was so severe and our potential hospital stay is likely to be lengthy, they refered us to Chapel Hill to meet with a ped. surgeon there who had been at CHOP for 10 years (Dr. Daniel Von Allmen- please keep him in your prayers). We met with him and felt really comfortable with him and the hospital team and their practices. So, in January (assuming I'll make it to full term- another prayer)I'll be delivering in Chapel Hill.

We have been back to Chapel Hill one other time and are scheduled for another visit on 12/05/07 with high risk OB. The last visit wasn't our best day. The radiologist really pushed the amnio test again which I have refused to have. I just have a really bad feeling about the risks associated with the amnio? The tests would show any chromosome abnormalities that may exists. In the event that the baby has both the CDH and a chromosome problem, his chances for survival will be very slim to put it mildly- I believe the doctor's termed it "incompatible with life". They said it would be better to know ahead of time and we could meet with the Neonatal Hospice....that didn't seem like such an added benefit to us so we're just trusting in the Lord and allowing Him to carry us through this. I just feel like we have made the best medical decisions possible considering the situation and at this point I am willing to surrender and hand this whole thing over into the hands of the Almighty.

When I was first diagnosed in Shelby, I was by myself since we weren't going to find out the baby's sex. I told Travis just to stay at work because it would be completely uneventful....seems almost comical now. Anyway, when they gave me the diagnosis, I knew immediately that God was asking me to trust Him with that which most valued..my children. All through this process so far, when I come to places where I feel completely overwhelmed and without hope, God comes to me again and again saying, "are you going to trust me". When it comes right down to it and you know that the Lord of the universe is speaking to you, you have to trust Him....I mean completely lay it all in His hands.

I know this entry has been really scattered. There is much more I can share and intend to. It was just a bit difficult to cram the two busiest and most spiritually enriching months of my life into a single blog entry. I'll get everyone caught up and answer any questions I receive as I muddle my way through this. I do want to thank everyone for their thoughts, prayers, cards and concern. It has meant so much to us! We are really hoping to settle on a name in the very near future so you can pray for him by name?

Betsy, Trav & Jack