I don’t know where to begin. I’ve been intentionally a bit vague and distant on the blog lately, because so much as gone on. I’m not going to fill in the backstory. I’m just going to begin and we’ll move forward from here.
Small little baby posts, I think.
So. No seizures today – that feels huge. It looks like Keppra is doing it’s thing. I worry that Kai is super grizzly, but is it a side effect of the meds, or is it him being a baby? I don’t think I’m ever going to stop worrying.
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
We got our baby shoot photos back. We were treated as part of the charity Remember My Baby – I felt a bit odd, as usually they do rememberance photography for parents who have lost their child, while our baby was very very much alive. It was part of our NICU leaving package, and as I felt robbed of those first precious weeks (I had contacted a few photographers about a newborn shoot before I went into labour) I didn’t feel I could say no.
Cheryl was amazing. We’d only been a few days at home and she put us at ease. She captured so much of our new day-to-day, it was really amazing.
Dear Kai,
Happy One Month! What a month it has been. Your arrival and this first month was definitely not how I imagined motherhood to be. No one imagines they’ll spend the first month of their babies life in NICU.
But what a fighter you are, those first few weeks you were so strong, despite the war raging in your little body. But oh, those first few weeks were so hard. So so so hard. To hear you make one little squawk after birth and then fall silent. To see you squint and open your eyes just that one time, and then to watch your little body stop moving and eventually become non-responsive. To have a machine breathe for you, with your little face and body covered in tubes and needles and wires. That time the vent got blocked and you turned a dusky shade of blue and needed to be resuscitated. Oh my sweet little boy, in that very first week I felt like I’d never loved so much and feared for everything all in the same go.
Your diagnosis is a tricky one. So rare, so full of unknowns. I’ve really struggled with it. But you, what a little trooper. Once we had an idea what was going on and were able to give you meds (which came with a severe warning that you may not respond to them) you came around like a champ. Since then we’ve been celebrating every little victory you’ve given us. Every tiny one.
The day you opened your eyes for the first time I bawled – big great sobs of relief – your eyes are so beautiful! So so beautiful. When I was able to hold you I cried. I cried the day your vent came out, and the very same day you took yourself off CPAP and started self ventilating – high five for breathing by yourself!! That was a good day. So was the day you cried for the first time. The day you started taking the bottle, and then the breast. The day we were able to take your last cannula out. And your ng tube. When you moved from intensive care to special care. When we were took off the ecg cables, and I could cuddle you without being tethered to a machine. I’ve cried so many happy tears at each tiny win you’ve made. And oh baby, you’ve made so many these last two weeks. You’re a completely different baby.
Daddy and I have also been celebrating your general baby-ness. Your beautifully chubby thighs, and funny little poses. Your attempts to find your thumb. We laugh so hard at the bottom toots you make, and the pooping. Oh man, you’re a champion pooper. Youre also a comedian with the poop. Waiting until Daddy has just changed your nappy, just fixing it up and you poop. Not just once, but twice. Your timing is impeccable, and we laughed so so hard. You like to be sung to, often quieting down for a moment to listen before you resume crying. You’re lyig next to me as I type this, and oh, you are snoring your little baby snores.
You also often get hiccups and goodness, do you hate them. With a passion, they always always upset you. It’s funny to see (less funny when it makes you vomit). And oh, your little hulk rages. You go from zero to dialled up past 11 furious in the space of two seconds. I think it’s something the NICU has trained you into, and it’s hard to tell your cues. We’ll get better at it though. Sometimes I can head it off with the dummy, or some singing and walking. Sometimes you just rage, with epic screaming (Kui calls it singing. Kui has never dealt with your rages though, I doubt she would call it singing if she had!). You’ll often hit me in the face with a flailing limb or headbutt me as I’m trying to offer quiet reassurance. But even in your rages I want to high five you. There was a time when you were limp and silent, so baby, if you want to rage you go right ahead.
I know we have an uphill battle ahead, but you are so loved. Our little family will get through it. I can’t even explain how much love there is for you. We have a village around us. We keep hearing stories about how friends of friends are praying for you. Church groups all over the world. And friends who aren’t into prayer, I’ve been told, are sending you visualisations and strength. It’s been revitalising, to know we have the support in our little corner.
The best news is soon we (hopefully!) will get to take you home. That first horrid week taking you home was an unlikely possibility, so to be taking your sweet self out of the hospital, oh little man. We’re very excited. I can’t wait.
Arohanui my little man, more than you know.
Mum x
