Folding
NICU 19
Day 57 - 58
Gestation 31 weeks
I forgot to write in my notebook day 57.
This was the day my lunch got stolen for the second time and I was fuming. I was cuddling Kayden, been hungry for 2 hours, tummy grumbling and my bladder full but I didn’t want to put him down. Finally get up to find my lunch bag has been emptied.
I shared a post about it on Facebook and everyone was fuming with me. I’ll share my post for those that didn’t see it:
My lunch has been stolen AGAIN!
This is just…
Like it’s not hard enough being in here. I am 2 hours late to eat lunch, I come into the mothers only room and my lunch bag has been emptied.
This is the second time.
I don’t understand what kind of person steals in NICU. And there are likely still here, maybe I see them everyday.
Everyday they put out free sandwiches, there is always toast, butter, vegemite, different jams, peanut butter, coffee and tea. And when it’s not lockdown baked treats. But I have vented about this before and the news that came the next day made this all so insignificant.
It all looked pretty normal coming in. I check in on Kayden first, he is in 25% oxygen and gained 85 grams. His book looks all good, he’s had a good night. The registrar was sitting at the desk and asks if I saw the brain scan results?
Huh? What brain scan. I thought we weren’t due one until 36 weeks gestation, I assume this is about the grade 2 IVH. Which she tells me has resolved and absorbed naturally.
Amazing! Fantastic! But that wasn’t it, I had assumed wrong, there was more; it was worse.
She reads my vibe, I’m completely confused. What else is there? She says we should wait for the doctors rounds, they are coming shortly.
The doctors explain there is no gyrification showing on his scan, that’s the folds in the brain grey matter. The brain shape should appear akin to a walnut but it is still smooth. They expect these folds to develop around 28 weeks gestation and Kayden is over 31 weeks.
Everyone in the round just turns quiet and serious. The look on everyone face is clear through the mask, this is serious.
I’m at a loss for words. I had no idea we were even having a brain scan. Apparently it was a follow up from another scan when they saw no folds. There is this long lingering silence.
I don’t know what to ask and even if I could put the words together to ask something, I can’t handle the answers. I can’t take this news alone, I need Lee. The rounds end awkwardly.
I go off to research it on my own. It’s bad. I end up down the rabbit hole to lissencephaly aka smooth brain. It fits but it also doesn’t fit. It means potentially serious developmental disability, seizures, inability to eat or swallow, breathing difficulties, and a shortened lifespan.
I break and my brain goes into a rampage, presuming and wandering into those dark corners.
One of our biggest fears with pushing to hold onto the pregnancy was around quality of life. We discussed this with the doctors the day I was rushed into birthing suite. This journey has been incredibly difficult and tested all that I have, but this is a strength I don’t have. It could change all our lives.