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!!!    

If you'd like to help our friends have set up this fund:

Baby Gibson: Pregnancy & Birth

WOW.  It's been many months since I blogged.  Months of crazy, busy chaos.  Through it all I never blogged about any of it.  Out of a lack of time and a sense of uncertainty of what was to come we just kept it all in during the pregnancy.  Many people close to us knew what was going on, as it went along we told many more and asked for prayers.  
I'll just start from the beginning and see if I can make it through... (several blogs to come)

The first weekend in February of 2012 we found out we were pregnant with baby #3.

Things seemed normal at first, we had a sonogram at about 8 weeks and saw the healthy heartbeat.  A week later I got a call at 7pm at night from my doctor saying they'd found something weird in my blood and we needed to get Daniel tested.  Over the next few weeks we worried and waited for results.  Turned out I had something called an Anti-E Antigen in my blood and Daniel had E in his blood.  Basically (VERY long story short) at any point my immune system could begin to attack the baby's blood cells causing an array of various serious issues.  And unlike some blood issues there was no shot or anything to prevent against it.  
That was bump #1 in the road.  We worried.  And prayed.  They began checking my blood each month  to see if anything began to happen.  It didn't.

At 16 weeks we found out it was a BOY.  I was there alone, the nurse looked, it was clearly a boy.  I made a cake and told Daniel & the kids that night.  Ryder was ecstatic.  His reaction was priceless.  He couldn't even get the words out (which is rare for him)!

At 20 wks we went back for the full growth scan.  The ultra sound seemed to be going normal, we even got a brief peek via 3-D at his little face.  I did notice the sonographer was spending a little extra time on his brain, but nothing was said, things seemed fine.  We looked at the pictures, Daniel left and went to work.  (This is a theme you'll see... God somehow managed to get me alone to deal with a lot of things during this pregnancy!)  I waited an hour and a half to see my doctor, texted the pictures, starting planning, thinking a lot of things through and then went in to see my doctor.  
At that moment everything came to a screeching halt.  My doctor calmly told me that there was fluid in the ventricles of the baby's brain and they needed to send me down to a specialist immediately.  The next hour was a crazy blur of tears & uncertainties... as the rest of the pregnancy & beyond would be.  The specialist told me my baby had something called hydrocephalus.  Since we'd chosen not to do chromosomal testings they could speculate that he may have some sort of chromosomal defect, such as downs or much worse.  I could do an amnio but since my placenta was on top it would pose even more danger than normal to my fetus.  She also told me I could still terminate.  Yes, at 20 weeks after I'd just seen a 3D picture of my sweet baby's face she told me I could still end that life.
I left that day with complete uncertainty of what would happen.  I was to see the specialist every 2-3 weeks for the rest of my pregnancy and we'd "see what happens."  
We prayed.  Like we've never prayed before.  I'd just read a book called, "The Circle Maker," and I began praying circles around this baby.  3 weeks later I went back.  The fluid had shrunk!  It was not gone, but it was at a manageable level.  We would just watch and wait some more.  As the pregnancy went on the fluid stayed level.  It was still a big concern, but not growing at a normal rate for hydrocephalus.  He was measuring small the whole time, but there was no real obvious reason for this.  At about 28 weeks they found fluid around the baby's heart.  They wanted to follow up soon after.  
We prayed more.  I went back in a week and it was gone!  They told me to come back in a couple weeks...

That appointment was supposed to be Wednesday, August 22nd.  Thank God I didn't find a babysitter for that day.  God had a greater plan.  I went in for my specialist appt on Tuesday August  21st at 3 in the afternoon at 32wks 5 days.  After a couple hours on the ultrasound table the dr came in and informed me that my fluids were gone (as if my water had broken- but hadn't!), the baby's heart was enlarged, the fluids in the brain had almost doubled in size, and it was showing that the baby was not getting proper blood flow to the brain through the umbillical cord.  She looked at me and said very calmly, "We need to deliver."  "Now?!?" I said.  She informed me that due to all those things we needed to deliver in the next 12-24 hours.  I began to cry (& shake.)  Until this moment I don't think I've told anyone this but the next thing I said was, "Is the baby going to be ok?"  She looked at me and said, "I just don't know.  But this is our best bet- Get him out as soon as possible."  She (being a mother of 4) hugged me sincerely and said, "Call who you need to call then you need to go upstairs and be admitted."  
I called Daniel, my dad & a couple friends to deal with the kids.  I texted asking for prayers for the next 24 hours as I walked upstairs and panicked a little more.  They rapidly admitted me to labor & delivery in hopes to get 2 steroid shots in me to help the baby's respiratory system.  Our amazing friends & family swung into action and started helping.  They gave me one of the shots and told me I'd be there for the night to just get settled, nothing was really going to happen yet.  I called Daniel, told him to go back home and get my stuff together.  About 5 minutes after that the on-call Dr. came in and informed me that the baby's heart rate was ok, but there was little movement (he showed me a straight yellow line on the monitor).  He then said, "We need to get the baby out in the next 20-30 minutes."  As he said it the nurses (knowing what he was going to tell me) literally pulled their masks & gowns on and began prepping for surgery and the Dr. reached over and stuck an oxygen mask over my fearful face.  I quickly moved it, picked up my phone & called Daniel who was still getting the kids dropped off and getting my stuff and told him to get there immediately.  I texted frantically and then off I was taken to the OR.  Daniel sped there, they prepped me, gave me my spinal (shaking & alone - clinging to a nurse I'd met moments before) and literally waited for Daniel to walk through the door to the OR.  I will never forget the feeling of those 15-20 minutes of misery laying on that table alone, letting the anesthesia begin, begging to God to protect my baby & get my husband there safely.  I heard a nurse say, "Dad's here."  I saw Daniel walk through the door and in the same moment saw the doctor move to make his incision.  

The baby was pulled out within just a few minutes and I could hear a hush and a nurse say, "The cord's wrapped."  (The cord was wrapped twice around his neck- thus the lack of blood flow on the ultrasound and lack of movement on the monitor.)  They carried him over to a table to the side of us, but we couldn't see him.  He made no sounds for a few minutes.  We could see them gathered around him, but heard nothing.  Then after what seemed like an eternity we finally heard that sweet little whimper. They wrapped him, showed him to me quickly and took him to the NICU. Daniel went with him there and saw them get him settled.  I laid there in shock & silence thinking this must have been a crazy dream.  

He had arrived.  All 3pounds1ounce of him...  
Gibson Everett Allen