#teammikaere

On this day, 26.10.2016. Okay, we’re edging away from doom and gloom and I am so ready for more of the joy. Two wonderful things happened on this day:

1. Kai started holding our fingers. If you put your finger in his palm he would HOLD ON. This grasp reflex meant that his reflexes were returning (!!) which considering where he was a few days ago (no reflexes, unconscious coma, imminently dying) this felt absolutely huge. Plus, it was nice to feel that connection, that he wanted to hold on to us just as much as we wanted to hold on to him. He was beginning to move a little more, wriggle a bit. It was hard to tell if it was intentional movement or seizure related, which is why the grasp reflex returning felt like such a definitive moment.

2. Kai opened his eyes. He OPENED HIS EYES. He was 15 days old. Considering the last time we saw his open eyes was at birth, we were ecstatic. This was one of the first milestones that showed, beyond a doubt, that he was moving away from imminently dying.

Oh my beautiful boy, I wish I could see your baby blues now. I wish you were here to laugh at us, to laugh at your sister and to be here, with us and your nurses and just. Here. I wish you were still here and I miss you. So very much. I can’t describe how very much, there are no words, really. Another day without you (another day carrying you in my heart).

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DBlOAdCMnHb/

On this day eight years ago, 25.10.2016. Oh this day. This day they wheeled my baby down to the OR and took a chunk out of his leg (read: skin and muscle biopsy to see if it would help explain the previously unexplained hypotonia, his floppiness). They didn’t really need to do this, because at this point they had a good idea (though unconfirmed by genetics) that Kai had NKH.

While I’m sad that it happened unnecessarily (Kai had a scar his entire life) I’m not sad that it was, many years later, given to UCL at our request so they could build iPS cells (Induced pluripotent stem cells), which were then used to grow other cell models in NKH research, helping move research forward to an effective treatment.

It brings me comfort somewhat to think that potentially, his cells live on, continuously generated in a lab for cell modelling, even if he doesn’t.

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit �#fundraising #teamMikaere #theMikaereFoundation from Instagram: https://instagr.am/p/DBipOcovv7W/

On this day, 24th Oct 2016. Here is what I remember about this day – sheer profound relief that I got to hold Kai in my arms. For almost a whole hour. He was showing signs of waking up, now that he was on sodium benzoate and dextrometorphan. He was beginning to get upset when he was in pain, and was beginning to breathe over the vent. We also were also becoming pro’s at changing his nappies, finally being allowed to do so.

I also remember that when he was in my arms, that was when I relaxed. I fell asleep (only momentarily, because you’re not actually allowed to sleep in ITU/NICU, let alone with a baby on your chest who is on a vent, which is taped to your shoulder…) but the point is here, that I was comfortable enough to do so. I wasn’t sleeping well, at home, without my babe. That I could drift off was such a ‘woah’ moment.

I held onto him as long as I possibly could that day, because it meant those awful CFM pins were not his head. And he settled I think, on my chest.

Looking back at these photos today feels like a balm. He was here, and he existed and he mattered. Even then I loved him with fierceness I still feel today. I also think these photos are getting easier, as I know that over the next few days things improve for him. And we got through a phase of joy and newborn normality (or as much as you can, when you’re basically living at NICU). Over the next few weeks was the most “neurotypical” time we ever had with Kai. He was just a teeny tiny baby, doing what teeny tiny babies do. I’m looking forward to sifting through those weeks.

Anyway. I’m getting ahead of myself. On this day, eight years ago, I was delighted that we were a little wee family, and I had my babe in my arms and that’s all that mattered right then.

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit �#fundraising #teamMikaere #theMikaereFoundation #NICU from Instagram: https://instagr.am/p/DBgEb8Qtf7f/

On this day, 23.10.2016.

There’s something about enduring this – living without our boy. I personally still like my heart is anchored back in August, and that everything else (seasons, time, life) is just passing me by. I remember feeling similar eight years ago too, that my life is in NICU with my bub, and that anything that happened outside NICU was irrelevant and just, happened without my notice or knowledge. My life then was in this tiny incubator. My life now is a bit… lost. My heart is tethered to my son, who isn’t here anymore. I feel like I’m still standing here, with what’s left of my raggedy, broken teether in my hands, tears streaming down my face, and life is just… happening to other people. It’s happening to others. Me? I’m still back in August, to when I last held my beautiful boy.

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #grief from Instagram: https://instagr.am/p/DBdfnONM0yP/

On this day 22.10.2016. This was diagnosis day. I didn’t know it, in this picture. In this picture I was just happy to have a chance at a cuddle. This was the first cuddle in literally days, and it was only 30 minutes. They taped the vent to my shoulder and I had sit very very still. It was heartbreaking, knowing that I desperately wanted to cuddle my baby, that I didn’t know the next time I’d get to, but equally, that if I moved, he would stop breathing.

I think almost every parent I know who has a medically complex child remembers their diagnosis day (except, of course, the parents of children who didn’t get a diagnosis 💔). It’s earth shattering. To finally know what’s going on, but not able to do anything about it. To worry about your beautiful babies future, to be told ‘global developmental delay’ and ‘life limiting’ and ‘profoundly disabled’. Seizures, dystonia, pain. I couldn’t imagine what raising a disabled child would look like, or what it would all mean, in reality. Here is what I would have told myself: it’s mostly just love. The tube feeding and the not walking and the seizures – love got us through. (It’s also love that’s decimating my heart right now, when he’s not here, but you know. I’d take every single moment over again, if I could).

He came so far, you know? In his eight years. Looking at this photo, and knowing that we had so many of these beautiful cuddles together. God, it hurts to know I won’t be able to cuddle him again.

NKH is just the most brutal, and I hate what it has stolen from us. This is why we fundraise though. To stop it from stealing life and joy from others, even if it’s too late for us.

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit �#fundraising #teamMikaere #theMikaereFoundation from Instagram: https://instagr.am/p/DBa60XoBFdy/

On this day, 21.10.2016. I don’t have words for today. This is what NKH looks like, in the newborn stage. Lots of heartbreak and grief (and love and hope).

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DBYWDBrPYmi/

On this day, 20 Oct 2016. Looking back at these is so hard. I remember the literal hours sat next to his incubator, listening to the ventilator beep and syringe drivers alarm and watching his HR/RR/Sats change, trying to figure out if the CFM is showing whether he was awake, or asleep or seizing (as if a layperson could read CFM results at a glance). Trying to surreptitiously read the nurses notes. I was still recovering from the birth, and I was exhausted and still, I couldn’t bear to leave him. It was as if my heart was now tethered to his (and now, all these years later, I know that it is. Still).

He’s only 9 days old in these photos. He was so teeny. He hadn’t opened his eyes since birth. I think on this day… I think it was a bad one. He’d lost his gag reflex, no such reflex, no breathing over the vent, more seizures. I think this was the point they started trying to prepare us for his imminent death. It felt inconceivable at the time (and if I’m honest, the idea that he’s died is still inconceivable today).

On this day I wrote “I can’t imagine a world without him in it, and I desperately don’t want to. He’s so perfect and beautiful and oh my little man! The world couldn’t possibly continue spinning if he wasn’t in it.”

How the world is still spinning today is beyond me. I’m still back in August, when he was here and well and with us. I don’t know how to be in this future without him. I keep talking about how this is agony, how being without him is excruciating. Those words don’t even begin to explain what this feels like. I feel like I’ve lost something vital to my existence. The words “I miss him” are like a teardrop to the ocean, with the depth of what I feel.

Oh bub. I feel like NKH has stolen so much from all of us. The world is less without you x

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #glycineencephalopathy #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DBVxOidtjqM/

On this day, 19th October 2016. Kai’s 8 days old, and we finally, FINALLY got to feed Kai ourselves (via tube feeding). I remember this feeling like SUCH a parenting win, that we finally got to do something most parents get to do (feed their baby).

And because his temp was holding steady, after they put a cannula in, they left the top of his incubator off. While we still weren’t able to hold him, being able to be closer to him felt like a big deal. Being able to wrap our arms around him, nuzzle his cheeks and smell his beautiful baby smell made us feel better. These photos of the three of us, a new, tiny family feel momentous. Even though he’s not breathing. Even though we didn’t know what was wrong. Even though everyone thought he was on the cusp of dying, despite the ventilator. There was us three, together.

Oh bub. I miss you. I miss you the baby as you were then, and as the boy I held in my arms the morning you died. I miss you with an agony that I can’t explain, there aren’t enough words to explain the space you have left. And all this time, I thought I was supporting you, but I didn’t realise just how much you were holding me up, holding me together. Without you I am broken, half the person I was. You made me a Mama, and looking back at these photos, I loved you so very right from the get go. With an intensity that makes living beyond you feel just so very impossible. And yet, here we are. I miss you. Moe mai rā, Kaikai. Your heart inside mine, always.

Today is the last day I’m going to ask. In these photos, Kai is 8 days old. He would have been eight this year. He was eight and a half weeks short. Please consider donating £8 in honour of what would have been his eighth birthday.

https://ift.tt/SrDzEaB

#grief #nkhawareness #nkhcansuckit #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #glycineencephalopathy #cureNeeded #complexmedicalneeds #fundraising #teamMikaere #theMikaereFoundation from Instagram: https://instagr.am/p/DBTMciTpA-R/

On this day, 18 Oct 2016. Oh gosh. On this day I got discharged from the hospital, and had to leave my baby behind in NICU without me. I can’t tell you how horrific that was. Not to be discharged (Sam slept that entire week in a sleepbag on the floor, next to my hospital bed so he was pretty happy for that part to be done) but to be discharged without my baby in my arms. You can’t sleep in NICU, or eat. Being forced to leave my newborn, who might die at anytime was just a really horrific experience.

On this day they also asked for an amino plasma panel, finally. The results would take a few more days to come back, though the request suspected a ‘blood borne organism’ (and also, weirdly, rubella), but it’s the little green bottle that looks at glycine. An amino panel would, in a few days, show toxic levels of glycine, confirming the the MRI results, leading to a diagnosis. I don’t know this, yet. I was just taking pictures of the nurses notes, so I could google them later.

Anyway. My poor bub. He was bruised, from all the blood they took. They did an xray, and an ultrasound and an eeg. He was put through all the things.

It has taken me literally years to look back through these photos. It was such a traumatic time. Instead of looking at these, I would usually turn to Kai, and hug him and love on him. But now he’s not here. And all I have are the memories in my heart, and the photos and videos. This time in NICU is no longer the most traumatic experience I’ve lived through, being without my boy is. And if photos and memories and love are what we have, then here I am. Gently, slowly taking in every single photo. Every moment when we were lucky to have him with us. (Not having him with us is excruciating).

Kai would have been eight this week. If you’d like to help celebrate his birthday, we’re raising donations into his memorial fund, with a long term goal that one
day, children born with NKH won’t need to experience this.

Please donate, if you can:
https://ift.tt/FOlNZy0

#grief #nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #glycineencephalopathy #teamMikaere
#theMikaereFoundation #nkhcansuckit #cure4nkh from Instagram: https://instagr.am/p/DBQnp5Bv5vN/

On this day 17 Oct 2016. Today, Kai had an MRI, while they were still trying to figure out what was going on. This MRI would give the initial hints that would lead his consultants to NKH. For me, that MRI meant they pulled the pins out and I could get a cuddle in. Just a half hour, but oh my heart, my entire world focused on my little babe right there between my arms. I was so in love.

Kai wasn’t doing so well. His breathing had gotten worse and he was relying on the vent more than he was before. Also they told us that a lot of the tests that rule out infection would come back the next day. The ones that were treatable. After that we were looking at disorders that can’t be cured, just managed. I remember being so worried. So so worried. I was right to, knowing what I do about NKH now. But I also wish someone had given me hope about how beautiful life could be despite something like NKH. How there would still be so many bright spots, so many beautiful memories to be made.

Being here now, knowing that I only have memories left, I’m glad we made so many. That there were seven years worth of beautiful memories. I carry your heart with me (I carry it in my heart).

Oh, Kaikai. My arms ache for you.

Kai would have been eight this week. If you’d like to help celebrate his birthday, we’re raising donations into his memorial fund, with a long term goal that one day, children born with NKH won’t need to experience this.

Please donate, if you can: https://ift.tt/nUtR9XN

#grief #nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #glycineencephalopathy #teamMikaere #theMikaereFoundation #nkhcansuckit #cure4nkh from Instagram: https://instagr.am/p/DBOC3DFhJLe/