it's amazing to me what time will do. while we were in the NICU, i just remember going through it and dealing with it because i had no other choice. now looking back, i realize just how awful, confusing and emotional it was.
i have suddenly been thrust into a world that i didn't even know existed. right now, i really just want to keep to myself. i've pretty much always been like this, but now more than ever i don't want to see anyone or talk to anyone. a lot of the people at the ronald mcdonald house and in the NICU have become friends and support one another, but i don't want this. this isn't the place for me to start making friends. i just want to come and go, unnoticed, and only be with Charlie. i don't want to see or hear anything other than my son.
so despite my desires to be left alone, people still talk to me. there is a woman at RMH that has been there for two months already. her baby was born in october and her original due date wasn't until february. at first i didn't even believe her because i didn't think that was possible. now i understand...he was a 23 weeker...there are many 23-weekers, some make it, some don't. RMH is filled with every emotion i've tried to avoid my whole life...sadness, anger, hope, frustration, confusion, and love. there are people there whose children are being treated for cancer...heart defects...premature birth...lung problems...intestinal problems...how can there be so many sick babies and children in just this small area?
if i think that RMH is a whole different world, nothing could have prepared me for the things i would encounter in the NICU. Charlie is hooked up to a ventilator. he was switched from the vent that does a lot of rapid pulses to a less intense one that is supposed to simulate real breathing better. this vent actually allows him to take some of his own breaths if he wants to. all the lines on the screen are green, except when Charlie tries to take his own breath, then there is a purple line. i am learning new terms left and right...o2 saturation, desat (desaturation...when his o2 saturation dips below an acceptable level), billirubin, jaundice, lung disease, mechonium, blood gases, pulmonary hypertension...
there are monitors and alarms constantly going off. if his o2 saturation drops below 88 for too long an alarm goes off. there are about 6 other babies in Charlie's nursery. the nurseries are numbered according to how bad your baby is. nurseries 1 and 2 are the bad ones -- you don't want to be here. however, all the babies start off here, no matter what their condition is. then, you progress up through the nurseries as your baby gets better and better until you eventually spring from the NICU. they told us that they usually tell parents to plan on their baby being in the NICU until its original due date, which for us would be mid-january. i couldn't believe that they thought Charlie might be there that long. however, they said that a lot of times they get out before the original due date, so i'm really hoping and assuming that we will all be home by christmas. what a perfect christmas present that would be -- all of us home.
i can't believe how many babies are here in the NICU. it seems that nearly all of them are here because of prematurity. some of them are so tiny...just over 1 pound. Charlie looks like a giant compared to some of these other babies. while most of them seem to be here because of prematurity, there are some others there too. the baby that shares Charlie's pod has such a sad story. his mother had actually decided to give him up for adoption before he was born. then, when he was born they discovered that he had had a stroke while still in the womb. i was there when he first came into the nursery, and that first day he just cried and cried and cried. it was such a different kind of cry though...someone later told me that it was a "neurologic cry". it's so weird to look at the difference between him and Charlie. at first, i thought i'd love it if Charlie had this other baby's vital signs...his respiratory rate was great, his o2 saturation was perfect, his heart rate is perfect (though Charlie's heart rate has been great this whole time). it just goes to show that you never know what's going on inside the body...this baby has great vitals, but from what i gather he has severe brain damage. they don't know yet the extent of the damage the stroke caused.
charlie seems to be doing okay...at this point everyone just thinks that he's a little premature and is just a little slow at getting better. one of the doctors told me that they were trying to get him off the vent within the next couple of days. apparently it can damage the lungs permenantly if he is on the vent too long. so...we just need to get him off the vent, get his jaundice resolved, get him eating...it will take a little while, but we're still really hoping for christmas.
i've basically planted myself right by Charlie's side. i get there around 10:00 in the morning, stay with him all day until about 8:00 or 9:00 at night, then go back to RMH, eat dinner, stay up until about 1:00 in the morning researching prematurity, then call the NICU to check on Charlie, then go to bed....then i wake up, and start the whole thing over again...
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