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Ellly

Dec 24
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On spending Christmas in hospital

By | #teammikaere | No Comments

I’ve let go of imagining what our future might look like. The life I thought Mikaere would have, the one I wished for him before we knew about NKH, we know that’s not a possibility anymore. Instead we moved to getting through one day to the next. Another day another day. As he got better, we were able to look a few days ahead. Then a week, then several weeks. That was before.

Now? Now we’ve regressed and everything has condensed down again. Our little guy isn’t doing so well. We’re back to a sleepy, unresponsive him. He’s stopped holding his head up. He no longer cries out with big healthy loud rage, but is more like a sad little kitten. He opens his eyes for a moment or two at a time.

It’s come on so suddenly. So the doctors here are chasing metabolic consultants in the early hours of the morning. We’re changing meds and we’ve put an NG tube in, just as a precaution.

Here’s what bothers me: this is reactive medical care that probably could have been avoided if we knew what his glycine levels were. Except it takes two weeks for his blood results to come back, and for the past two weeks we’ve outgrown two doses. What’s more, those two doses are blind, because we don’t know his levels. So stupid.

So. My baby is unresponsive, and has a tube across his beautiful cheeks.

We’re absolutely spending Christmas in hospital.

 

PS if you haven’t already seen, we’re raising funds for Kai’s first Christmas – justgiving.com/mikaere-xmas. If you’re able, please consider donating. We truly believe Kai’s future is tied to NKH research.

Dec 23
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On infantile spasms

By | #teammikaere | No Comments

Another day. Breathe in, breathe out. So, we spoke to our neurologist yesterday. Kai’s eeg showed signs of Hypsarrhythmia, which indicates infantile spasms, a kind of seizure. They’re going to up his dose of keppra, and start him up on a super high dose of steroids. 

Because the steroids compromise his immune system, and his blood pressure and urine need to be checked every few days. Womp womp. On top of that, we’re pretty sure he’s got some kind of cold/infection, which means he’s having more seizures. Womp womp. Upside is that we’ve just been moved out of the infectious diseases ward (not that he was ever infectious, it was just where the empty bed spot was). Good job us. Still, it’s so heartbreaking to hear his whimper of a cry when we’re so used to extreme hulk like rage.

So, the plan is to stay till Christmas Eve, and be back to the hospital post Christmas for an eeg. Fingers crossed we can stick to the plan. Cmon little guy, tell your brain to sort itself out.

 

Dec 21
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Living in the hospital

By | #teammikaere | No Comments

You can tell the one off hospital parents from those that are there regularly. The regulars know the nurses names and have sleeping bags and know how to turn the spO2 alarms off. They’ve already got all the snacks and they’re just… they’re just calm. This isn’t their first rodeo.

The one offs are scared, they worry about the beeping things and they cry in the parents room. It’s heartbreaking. 

Were somewhere in between. I have a sleeping bag this time, for bunking down on the weird single seat pull out bed. I don’t yet know all the nurses names but I don’t cry in the parents room either. I know where to go for a meal or where the good bathrooms are. I have all the meds, and I’m the one that draws them up and administers them. I have a feeling that we’re going to become old hats at hospital visits. 

I think mostly I’m not scared. This visit I know is to figure out what Kai’s new ‘normal brain activity’ looks like, since we’ve started on keppra. To understand if the clusters are going to be the new normal, and to understand if his meds need tweaking again.

So, we had an eeg.  And we’re waiting on results. Hopefully they’ll have them soon. Hopefully, after that we’ll be able to go home!

Dec 19
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I probably should stop mulling over the ‘typical’ parenting experience

By | #teammikaere | No Comments

Everyday I grieve the alternate possibility, the one where Kai landed in the solid 75% and inherited one of the genes that could process glycine.

Where his little brain wasn’t having seizures, and he didn’t have to be on bucket loads of medication every six hours, where his future was bright and relatively pain free by comparison.

I feel robbed, for me, and Sam as parents. But mostly for our little guy – he’ll never know life like we do. He’ll never not know difficulty, and pain. He’ll have to fight his way through because his body literally can’t do what ours can, and it’s damaging his brain in the process.

I’m not sure exactly how to be okay with that. That there isn’t a lot I can do to prevent it. I have to put my faith in the research. Of the four researchers we know about, only one is looking at treatments. It’s with gene therapy, and I can’t help but feel it’s his future.

We started fundraising a small amount for Kai’s first Christmas. 

www.justgiving.com/mikaere-xmas

We’ve already hit our target, which is a little overwhelming. There is so much love for our little family, I’m so grateful. I do believe it’s his future, which makes me feel like the more raise the better his chances.

We’ll see. If not for him than for kids that come after.

Dec 17
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A Start

By | #teammikaere | No Comments

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.

Dec 11
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Dear Kai – Month Two

By | Dear Kai | No Comments

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

Dec 01
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A fun little baby shoot

By | #teammikaere | No Comments

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. 

Nov 11
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Dear Kai – Month One

By | Dear Kai | One Comment

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