So Sorry!!

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!!

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

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....

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

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

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.....

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

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?!

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

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

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

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

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!

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

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

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

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

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?

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

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!!

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

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......

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!

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

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

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

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

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!

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

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

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