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Monday, November 21, 2011

Updated**The story from June--"Thinking" part five...

So back in June I had been writing the story of how my boys joined our family and a bunch of the events, emotions, and changes that came with adding first Gonzo and then Josiah to our family.  However, I left off with the initial arrival of Josiah, but have yet to go into the largest life changing period I have ever experienced.  Josiah's first few months with us were the most profoundly life changing, devastating, exhilarating, exhausting, joyous, sorrowful, and all around insane and yet vision clearing of all.  He was a bomb that exploded everything--including our relationship to each other as spouses, our values system, our finances, relationship with the rest of the outside world, our careers, our future plans, our sense of what it means to be a family, my understanding of what love is, my understanding of how much I can handle, my understanding of the sibling relationship between my children, my understanding of life dynamics,  my understanding of what it means to be a parent, and my beliefs in and understanding of God and my relationship to God.  To say that sounds like over kill would be incorrect--this bomb of an experience truly is only under-stated by words.  To read the beginning start with the post  from June "Thinking always a dangerous thing to do..."

So back to the story.. So we brought Josiah home from the hospital in late October 2006.  He had a multitude of issues, but the hospital felt he was stable.  The first thing we did was get his apnea monitor, and make sure we knew how to use it, which was not that hard.  It did go off fairly often, but the doctor reassured us that it was most likely due to movement or poor placement of the sensors, as the doctor though he was just fine and that we were over reacting.  One of the biggest challenges was feeding.  Josiah had terrible reflux and was on medication for it, but it was not the puke all over the place type of reflux, it was the up and down and up and down  kind, where little comes out but it just keeps kicking up (acid and formula together) into his esophagus and air way and the going back down only to come back up. So after taking a bottle he had to be upright for an hour after every feeding. He also had a very poor/weak suck, and tired extremely easily.  So he was on a high calorie infant formula for preemies and it took him about 45-1 hour to finish one once, which would tire him out, so he would need a break and then another feed in an hour.  So if you do the math, we were feeding him for approximately one hour and keeping him upright for 45 minute to an hour and feeding at least every hour and a half to 2 hours.  We got very little sleep....More so than even if with a regular newborn. But we made it work.   Luckily he was not a crier (I don't think he had the strength or energy to be a fussy baby). 

We had Josiah about 10 days, when he had his first major episode.  I had taken him to the eye doctor at the big hospital about 45 minutes from home.  He did not wear his apnea monitor when we were out and about as we had been told it was only necessary when he was sleeping in his bassinet or crib (which had been elevated to a 45 degree angle to the reflux).  I was holding him in the waiting room and he was more limp than usual.  His color did not look right, and to me he did not seem to be breathing correctly.  But I figured I was just being paranoid like our doctor had said, and since the eye doctor did not seem concerned as we went though the tests, I was only a little worried.  In the car driving back though, his color really was not good, and he seemed excessively limp and unresponsive, much more than usual.  So I went straight to the pediatricians office before going home.  He was more responsive there and his color had gotten back to normal, and the doctor told me that I was being too nervous.  he said I had had him dressed to warmly and that is why he was more limp, and if I noticed him acting that way again to cool him down.  I had mentioned to him that the night before his apnea monitor went off many times, and again he said it was set wrong and I should call the DME company to come and change the settings.

So I took Josiah home.  But he still was not acting like himself (yes I know he was a tiny baby who we had only had for about 10 days, but that is more than enough time to learn to read a helpless infant whom you are responsible for and love).  So I tried to rust the doctor--after all he is a doctor and I was not, so he MUST be right, right?!?  The apnea monitor kept going off, and Josiah looked wrong.  He was limp and his color was getting grayer by the minute.  I undressed him as the doctor had advised that I was causing it making him too hot.  But that made it worse, as he suddenly stopped breathing all together and his lips turned blue.  I did a few rescue breaths and called 911 and went back to rescue breaths.  The ambulance got there in a matter of minutes, by which time I had gotten him breathing but he was still in obvious distress.  So he was quickly wrapped in a blanket and he and I jumped int eh ambulance.  At the hospital his temperature was reading 93 degrees (so much for the doctor saying I was keeping him too warm) and he had multiple episodes of apnea (not breathing) and bradycardia (where the heart slows down too much).  The little hospital was not equipped to handle him so they call for an emergency transport to the PICU at the hospital 45 minutes away (where I had been earlier that day). 

While we were waiting for that transport, I got ahold of A and A had picked up Gonzo from preschool.  I filled them in on what was going on, and our friend Sean came to watch Gonz while A and I followed the ambulance to the PICU.  He had a few more episodes of stopping breathing during the ambulance ride, and was admitted right to the PICU.  He was in a heated oxygen tent in the PICU and they were running tests.  The doctor that was there was wonderful and very familiar with the unpredictability of preemies.    His prognosis was unclear, so we called family to let them know what was going on, and I called my dear friend Jacquie (who was also my former pastor) and she came up int he middle of the night (around 2am) and baptised him in the hospital.  By the time she got there A's sister and mother had arrived and my mother and stepfather had arrived.  So he was baptised with extended family, some of whom had not yet met him.  Within a couple of days (hellatious days they were), he had stabilized and was able to move to the step down unit.  We had been sleeping at the hospital (they had a sleeping lounge for PICU family members as well as a shower, toiletries, etc....) and once he stepped down to the less intensive PICU unit, we started taking turns with who stayed and who went home, as we needed to keep Gonzo's life as stress free and normal as possible.  So we switched off daily.  Thank God I was on leave from work.  For over 10 days we were int he hospital before the determined that he was ready to be released. He had an eval by the neurosurgeon who felt his hydrocephalus was stable and not causing the problem, an eval by his neurodevelopmental (as we were going to see her that week anyway so she just came to his hospital room when she was doing rounds), and a few other doctors who felt he had no ongoing issues. He came home with essentially the same meds and such as before with minor changes.  he was to wear his apnea monitor at all times now, AND we switched pediatricians, as the former one was obviously an idiot who had not listened to parents--the people who know a child best and are most vested in his survival. 

A little over a week later we were back in the ambulance, he had stopped breathing again.  This time they ran other tests, and for a week we were there.  We spent our first Thanksgiving as a family in the hospital and at Ronald McDonald house....

I will finish this story later, as I have to get to my father's house and feed my chickens before the kids I babysit come back...

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