Dear Kai,
This month has had so many firsts for you, your first ambulance ride with a full entourage out to meet your metabolic consultant. Your first time without any monitors, a proper free range baby. Your first time leaving the hospital.
We got to spend your final few days in NICU rooming in and I think we were all drunk on the freedom. You expressed your delight with lots of screaming, but, thanks to our amazing NICU nurses we’ve got a few different tricks up our sleeves – the baby burrito swaddle works a treat, and you chill out so good.
We also had a big round the table of Team Mikaere too. Oh little guy, you have so many people on your team! It was pretty intimidating walking into a room with a good ten medical professionals around a table (and that’s not even all of them) but everyone is looking out for you. The system has a lot of moving parts, but we’ll figure out how it works, I’m positive we will.
But, after big meetings and a handful of goodbyes and forms and talks, my sweet boy we took you home!
On the way out of the hospital, we met another couple. They were very fancy and had a boy a fair bit older than you. The lady was very taken with you, how little you looked in your car seat, how pudgy your cheeks. She was the first person who loved on you who had no idea you had a super rare, tiny little glycine problem. You were just a beautiful wee little baby.
Since we’ve been home there has been a learning curve for us both. One of us is definitely more patient than the other. Still, were managing. I’m slowly beginning to differentiate your cries, and we’re working out a routine of sorts around your many medications and hospital appointments.
Getting out of the house always feels like such an achievement, but mostly I love the days we spend in. Hanging out in bed all morning, all cosy. The best bit of the day is when Daddy gets home, he scoops you up and your nightly routine starts. Meds, a feed and a bath with Daddy, before going down for the night in your little cot. You take to it so well! You’re a fan of the bath, chilling out in its warmth. Less a fan of undressing before or towelling off after.
Oh little man, you have so many people who love you. We’ve had so many people come over to meet you, and you’re so gracious with all the cuddles. I’m such a proud mama, I love it when people talk about how cute you are, how chubby your cheeks, your long legs and your funny little friar tuck hair.
It’s not all super rosy, we’re waiting for the seizures to start, and you’re having these epic reflux fits. We know that your medication is sad on your little belly, and you’re so upset when it all comes back up. We’re working it out, trying to make you as comfortable as possible. You suffer us with grace and screaming, we’re still learning. Your facial expressions, like little old man grumps always make us laugh.
Oh baby, you have changed our world. Everything has condensed down to you – suddenly it’s very clear what is important and what is not. I feel like we have a rough time ahead of us, but having you home and loving on you? It’s been such a delight.
Arohanui my little man, more than you know.
Mum x
