Saturday, November 10, 2012

Gibson: The First Couple Months.

*If you're just reading this start with the blog below first!*

After Gibson's rocky arrival it became more clear how much about him was UNclear.  So many "anomalies," as the doctors have continued to say, haven't really add up to an overall answer.  The little guy has conquered a LOT in these past few months.  And so have we.  People told us from day 1 the NICU is a rollercoaster.  It's true.  Every single day is an unsure fight for life.  There could be GREAT news or horrible.  You just have to brace yourself.  And walk in with faith & hope.  
There's a term used for nicu babies like him called "whimpy white boy syndrome" (in that they just don't THRIVE!)  Well, Gibson has proven he's a fighter!!!  And although some days it's frustrating that doctors can't  give us an answer... At the same time I'm so thankful that they CAN'T give us an answer!  The doctor told me one day, "Gibson has not been by the book since the beginning, he didn't read the book, he doesn't care that there's a book. He's on his own terms!"  And that's ok with us...

The first few days were the hardest of my life.  After they took him to the NICU I didn't see him for about 15 hours - till the next morning.  (After having the C-section I was hooked up to stuff and could not go there.)  Once I finally saw him he was in the isolate and I couldn't even touch him.  It was unreal. If you are a NICU Mom (which you should receive a serious medal of honor for surviving) all this will sound normal to you, but for me, I'd NEVER even thought of any of this happening or even EXISTING.  It was as if I were in a weird dream looking a the baby that had been in me, but he wasn't quite real because I couldn't even touch him.  He definitely could belong to me?!?  He was born on Tuesday night and I was finally able to hold him on Sunday... One of the most emotional moments of my life...

The first few weeks doctors spent trying to figure him out and assess all of his "issues."  Of course there were immediate breathing problems and he dealt with severe glucose issues for the first 4-5 weeks of life.  An endocrinologist was monitoring him closely and although he was able after about 4 weeks to start maintaining an ok sugar level he may still deal with some glucose issues long term, we are not certain yet.  Within those first weeks they sent tons of testings including serious chromosomal/syndrome testings to the Mayo clinic.  We waited and prayed.  Nothing came back to support the overall issues the doctors were seeing.  He received 2 platelet transfusions and 3 rounds of surfactant (a life saving drug for babies lungs).  He had extremely low calcium levels, hyperthyroidism, some fluid around one kidney, and many other things I was never able to process at the time.  We just took it day by day and tried to just deal with the most pressing problems at hand.  They began to closely monitor & examine his brain and heart problems...

I began to be able to have kangaroo time with him and started to bond.  Part of me was so scared to let myself even become attached to this tiny little human being that had turned our world upside down.

We didn't let the kids meet him till he was a few weeks old...

At 4 weeks he'd just his 4 lbs, was off oxygen support & moved to a "big boy bed" (out of the isolate).  It seemed like a good day in the NICU. 

I left that night about 11pm and the baby I returned to the next day was a VERY different, very sick baby.  He had been placed on isolation in fear of what it might be.  He was back on oxygen support through a nasal canula.  His blood count had dropped drastically over night (to the point that he ended up receiving 2 red blood cell transfusions in the next 36 hours!)  He was covered in a rash under his skin that caused him to look like a blueberry muffin and NO one had a clue what had happened.  He was tested for every possible virus/infection over the next few days.  They did a spinal tap, abdominal scan, MRI, etc.  

Upon doing that MRI that week the neurosurgeon that had been looking at his brain scans determined he would need brain surgery for aquaductal stenosis and a shunt to relieve the fluid in the ventricles of the brain.  They decided to follow up with another weekly scan the next week and watch the growth of the ventricles.  We prayed some more. :)  After the next scan the Neurosurgeon determined that the ventricles have NOT been growing at a size large enough to warrant surgery!  Praise God!  We are still following up with bi-weekly scans and praying that his head continues to grow at a steady rate and the fluid does NOT.  We will likely follow up with a Neurosurgeon for years to come as we watch and pray about his brain.  Many people have asked (in a round about way) if there is any neurological damage.  That we do not know.  I'd love to be able to say absolutely not.  But that's just not clear at this time.  

In the next weeks he recovered from whatever unknown virus/infection had caused all of that and began feedings.  As he grew older and his feedings continued through his NG - nasal feeding tube we tried to begin bottle feeds and it became clear that there was something wrong there.  The amazing speech therapist spent hours trying out different bottles/methods.  He should be taking about 60mL 8 times a day by bottle and at best he was only able to take 20 twice a day.  They finally did a Barium Swallow Study which found that he has an esophageal problem.  Basically the muscles in his esophagus are too immature to contract strong enough to push the milk completely down.  It is unclear at this time how quickly they will develop.  He will likely  soon have surgery for the Gtube (Gbutton) to feed.
As far as his heart he has had 3 openings in his heart (PDF, VSD & ASD).  2 have closed!  The last has not & we've been told at this point it will not & he'll likely need heart surgery between age 1-2.  It is unclear of the affects it's having on his overall heart function & breathing, but it is being closely monitored by Cardiologists.  Again, praying it closes on its own.  He is also dealing with some pulmonary hypertension that is affecting his heart functioning breathing. Unfortunately pulmonary hypertension is treated WITH oxygen, but his ASD is affected by too MUCH oxygen.  So it's all a balancing act right now.

2 Months:

Last week, at 10 weeks we decided to have Gibson transferred to Dell Children's Hospital NICU to have many of the specialists that were following him begin to monitor his progress and see exactly where he was and what needed to be done next.  He would have to be there to have his Gtube surgery anyway.  The day of the scheduled transport I again walked in to a very different baby.  He'd had a deterioration overnight and was demanding high oxygen levels and eventually had to be intubated to a ventilator.  (He'd NEVER been on a ventilator before.)  We pushed to go ahead and have the transport and they decided he was stable enough to make the move.  Upon arrival at Dell he went through lots more procedures & testings, breathing treatments and another blood transfusion.  It was determined that he had something called Staph Aureus- a staph infection in the respiratory system and possible another sort of respiratory virus causing this sudden set back.  Many other tests have again been sent and we are waiting for results.  
The past 10 days have been rough and he has had a hard time with everything going on, he has been mostly sedated to stay calm through it all.  Being gestational age of 44 weeks now and 7lbs being on a ventilator and staying still & calm was just not feasible on his own.   He is making great improvements and we are hoping and praying for the best.  They say he may deal with this respiratory infection for several weeks to come.  In the mean time the neuro & cardio teams are seeing him regularly and monitoring his brain & heart and the doctors there are searching again for answers to all of his issues and will begin working on feeding again soon.  And to answer EVERYone's big question... NO, we have no idea of any timeline.  He is clearly on HIS OWN timeline. ;)

There is MUCH more I could go into, but that's about as much as I can get into for now!  I PROMISE to keep this updated with Gibson's progress going forward... As for how else this has affected our life and family... well that's many more blogs for many other days! 

THANK you for continued prayers for our little man! xoxo!!!    

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Erica said...

Hi Beth! This is Erica Wilson (Bergstrom). I just read your blog posts about Gibson, and my heart is just ACHING for you guys. Eli was a preemie and spent six weeks in the NICU, so, though I only know a glimpse of what you are going through now, my heart hurrts for how much you are hurting as you leave your sweet baby in the NICU day after day and go home without him. I want you to know that I am praying for Gibson and for you and Daniel as you walk through this draining, difficult time. If there is anything specific I can pray for or even anything I can do from afar for you, please, please e-mail me! ( May our mighty, kind God uphold you guys in His strong arms!

Its Me Again Margaret said...

I love following your cute kiddos all three of them! You and Daniel are amazing and yes God will get your precious family through all of this! I pray that cute little Ryder and Paisley will be the best big brother and sister to Gibson! Thanks for the update!