Baby Dellinger

Who Knew??

noreply@blogger.com (Betsy Dellinger) — Fri, 11 Sep 2009 02:46:00 +0000

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

noreply@blogger.com (Betsy Dellinger) — Wed, 05 Aug 2009 03:03:00 +0000

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

noreply@blogger.com (Betsy Dellinger) — Thu, 23 Jul 2009 01:20:00 +0000

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

noreply@blogger.com (Betsy Dellinger) — Thu, 16 Jul 2009 02:08:00 +0000

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!!

noreply@blogger.com (Betsy Dellinger) — Sat, 24 Jan 2009 03:51:00 +0000

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!!

noreply@blogger.com (Betsy Dellinger) — Wed, 24 Dec 2008 02:55:00 +0000

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!!

noreply@blogger.com (Betsy Dellinger) — Fri, 31 Oct 2008 17:42:00 +0000

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

noreply@blogger.com (Betsy Dellinger) — Tue, 28 Oct 2008 03:15:00 +0000

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....

noreply@blogger.com (Betsy Dellinger) — Thu, 11 Sep 2008 01:29:00 +0000

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

noreply@blogger.com (Betsy Dellinger) — Tue, 05 Aug 2008 13:49:00 +0000

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

noreply@blogger.com (Betsy Dellinger) — Wed, 16 Jul 2008 23:51:00 +0000

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.....

noreply@blogger.com (Betsy Dellinger) — Thu, 03 Jul 2008 01:14:00 +0000

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

noreply@blogger.com (Betsy Dellinger) — Fri, 27 Jun 2008 16:14:00 +0000

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?!

noreply@blogger.com (Betsy Dellinger) — Thu, 26 Jun 2008 18:45:00 +0000

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

noreply@blogger.com (Betsy Dellinger) — Sun, 15 Jun 2008 03:16:00 +0000

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

noreply@blogger.com (Betsy Dellinger) — Tue, 03 Jun 2008 02:26:00 +0000

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

noreply@blogger.com (Betsy Dellinger) — Mon, 19 May 2008 03:14:00 +0000

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

noreply@blogger.com (Betsy Dellinger) — Thu, 15 May 2008 02:53:00 +0000

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!

noreply@blogger.com (Betsy Dellinger) — Wed, 14 May 2008 00:49:00 +0000

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

noreply@blogger.com (Betsy Dellinger) — Mon, 12 May 2008 02:47:00 +0000

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

noreply@blogger.com (Betsy Dellinger) — Thu, 08 May 2008 03:08:00 +0000

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

noreply@blogger.com (Betsy Dellinger) — Tue, 06 May 2008 18:25:00 +0000

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

noreply@blogger.com (Betsy Dellinger) — Wed, 30 Apr 2008 13:06:00 +0000

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?

noreply@blogger.com (Betsy Dellinger) — Mon, 28 Apr 2008 02:15:00 +0000

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

noreply@blogger.com (Betsy Dellinger) — Thu, 24 Apr 2008 02:05:00 +0000

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!!!