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