Tuesday, June 7, 2016

More of the Story

i can't believe i haven't written on the blog since october.

well. i'm back. 

truth is i've never left. i'm still here. always will be. because noah won't be. and as long as i am living my firstborn baby's huge void will be felt. 

even when i'm holding another baby. oddly enough, those might even be the times when the void is most palpable. in the quiet of the night, feeding his baby brother. 

the last few days, for noah's 3rd birthday, i've re-posted noah's birth story that i wrote a couple years ago. it's been sweet to revisit those tender, miraculous moments. the best of moments. 

i've realized however the story sort of stops just before it really begins. i'm not entirely sure why. maybe i wanted to end on a good note, stay positive. maybe i didn't have the courage to play back the nightmare. maybe i wanted to selfishly keep noah as perfect as possible, and shelter his memory from the ugliness. 

i'd like to take you on a journey i'm finally ready to share. to show you glimpses of the horror (and sometimes miracle-type comfort along with it) we endured those days he was sick. not to shock you. not to make you feel bad for us. not to make you sad. but to honor noah and the strength he endured and the peace he taught us through it. and to remind us all of what's real.

i need this to fully grieve - to go there, the dark corners where it's scary and uncomfortable. and remember what happened (to the best of my ability). because in doing so, i'm remembering him and keeping him alive.

so i will (try to) embrace it all.

it'd be a hell of a lot easier to take a vacation. but i can't do that. this is life. i choose not to escape, because that would mean, for me, escaping noah. and that's not an option.

i'll pick up the story right where i left off, the very end of our perfect day. it was the night of june 6th. we were exhausted. i remember standing in our dark room bouncing noah and trying to help him to sleep. my thought in that moment was, "well. here they are. the sleepless nights. so they begin.

around this time a nurse walked in to check on us. as she was leaving she offhandedly mentioned that they have a nursery where they could watch him while we slept, and would bring him back to be fed. i hesitated, looked at john, then decided we might as well take advantage getting some sleep while we were there.

turns out this one tiny decision saved his life that day and allowed him to survive many more days with us. had he stayed in our dark room while we half slept, we would have missed it.

not sure how long it was after he went with the nurse (maybe a couple hours) that i was (calmly) woken up by someone telling me they noticed noah's lips and hands were turning blue so he was getting some extra oxygen. she said something like i shouldn't worry and to go back to sleep. 

and can you believe i did? i can't. but i had no reasons to fear. i also was half asleep and didn't really understand what she was saying. and she was so effing calm. so i was too. (this was one of many times john and i took the lead from health professionals on how we should be feeling, because we hadn't a clue what to feel or do... so we, for better or worse, trusted them.)

then in the early morning of june 7th we were woken up and told noah was still on oxygen. we both were led straight to see him... in the NICU. 

i had no idea he was there. i mean, looking back...duh. he was on oxygen for christ's sake. but my mind couldn't hold that information apparently. (again. the first of many times this would happen. my brain just couldn't keep up with it all.)

we walked into his room.

he had a mask fully covering his face and tubes and IVs everywhere. my baby. my boy. my heart.

i went numb. doctors and nurses spoke to us but i couldn't hear them, i didn't understand. how could i process it all? it was too much. 

i actually had the thought, "so we're not all going home today?"

sweet, naive little mccayla. sweet, clueless mccayla. sweet mama just hanging on by a thread to survive the weight of what was happening.

these were the first moments when the reality we knew, the previous reality where our world was complete with noah and we were in a state of pure bliss, began to ever so slowly unravel into a murky, dark, confusing realm where nothing made sense.

worst of all, the doctors had no real answers. it seemed like every time they would say, "we think it's this, so we're going to try that." again and again "this" wasn't it and it's "that" didn't help him. 

he was needing more and more support. more oxygen. more IVs. our boy disappeared in a sea of monitor beeps and cords.

i have a very clear memory (not too many of these from those days)...of sitting in the bathroom a couple doors down from his room with my hands shoved over my ears, wailing because i could hear his screams as they tried putting an IV into his foot. and i could do nothing to save him. my skin felt like it was intruding upon my body but i couldn't escape. i felt his screams inside me, like his pain was mine.

the horror was all around. 

at one point during the day we were told his heart was working harder than it should be. and just to hear his heart mentioned at all took us to another level of fear. 

i saw my rock-steady john break down and cry for the first time ever, that i had seen. the other times were sweet tears. out of joy - at our wedding and noah being born. so this was serious. 

near the end of the day they had done all they could do at the Overlake NICU and decided to transport him to Seattle Children's. it just kept getting worse and worse. we were spinning out of control.

it took quite awhile for the transport team to ready all of the machines and oxygen and monitors needed for a tiny, two day old baby. and then, all at once, there he went, into the ambulance. we watched our heart drive away. (following closely behind with our car.)

all throughout the day we received so much encouragement (mostly through facebook or texts) from people sharing their NICU stories or different health struggles they had with their babies and it gave us so much hope.

i also noticed another couple in the Overlake NICU coming in to visit their baby, like it was an everyday, normal thing. maybe this wasn't so bad?

the dance. the roller coaster.

down. up. 
better. worse.

hoping for the best and positive thinking would stop and stay for a bit. but fear...fear would linger. like a offensive smell that just wouldn't go away. always there. paralyzing. nausea inducing. 

the minute we walked into the Seattle Children's NICU we were greeted by the medical director who, point blank, said its one of three things: (1) it's only pulmonary hypertension, very common and treatable with some sort of gas (those weren't his words. but i don't remember 90% of what was said to me in that hospital); (2) a more serious lung and/or heart issue that might require him going on a bypass machine called ECMO, but again treatable with time, or (3) a 2% chance it could be a fatal, non-curable disease called ACD. 

noah was on ECMO by the next morning.

our roller coaster continued. but it seemed to be plummeting down.

for the next week or so, i will be sharing some of our experiences from his 13 days, and that wild ride we took with the little boy who fought at every turn to survive, to show us love as colorful as a rainbow.

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