Elly Rarg

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/

We went back to hospice today. For a swim, but also for our hearts. All the bereavement support is there; so it made sense to try do a gentle visit back. There are lots of people there who love us, and are kind to us, and honestly, it was hard. It was hard to be there without Kai, to remember the week before and the week after he died.

Time is really throwing me, because it felt like I could just step back into his room, and he’d be there, and I could scoop him up and love on him, feeling his chubby fingers in mine, his hot breath on my neck, his chubby cheeks alongside mine… that’s not true, not even in the slightest, but my heart doesn’t know that, but it felt like I could, and I desperately wanted to somehow step back into a time and space where he exists.

But there aren’t magic time travelling doors that would allow me to be with my son. That’s not a thing. Instead time doesn’t care about me or my heart. Time just goes forward, and drags you with it. The sun rises and the earth spins and the sun sets, and the earth just takes you forward whether you want to go or not.

The sun set on the day he died, and then rose the next day. And again on the day we buried him. And on his birthday, when I lay down a blanket of flowers on his grave. And today, when we went back to the place he died. And it will tomorrow, and every day forward.

I’ve since come to realise that it’s not about carrying my grief, about *doing* something to make it easier, to ease this. It’s about endurance. About accepting that the sun did rise today, and holding tight until sun sets (and the reverse, too; from sunset to sunrise). It’s about getting from breath to breath. And this my new forever.

(I hate it, obviously. Living without my boy is agony).

Anyway. If you find a magic time travelling door, let me know, because I really want to go back. (Don’t come for me, I know time only goes forward but my heart is broken, so…) from Instagram: https://instagr.am/p/DBMSaS5oknw/

On this day, 16th Oct 2016. Sam and I went home for the first time, to shower and get more clothes. Being there without Mikaere was awful. That this is our story is heartbreaking (I still feel the same).

At this point I was still admitted to the hospital, sleeping down the hall as my heart was being irregular. I remember the idea of not being at the hospital with our baby was inconceivable. There was a lot of crying. Faith and Fortitude, that’s what we used to tell ourselves.

Kai’s brain activity is abnormal, they still were sticking the little (CFM) pins in his head to measure things, which meant we couldn’t hold him. I remember that they had planned to do an MRI in the next day or two, and would take the pins out, which meant we could hold him. I was desperate, desperate to cuddle my babe.

(I still am, here, today in 2024. Desperate to cuddle my boy. I miss him. With an agony I don’t know how I’m going to endure).

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/JacZoL3

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

This day, on 15 Oct 2016. I’m still finding it really hard to look back at these. This is Day 4. We still didn’t know what was going on. I was really holding on tight to every positive I could, like was putting on weight, he’d gained 60g, and that felt like such a win. We also got to start changing his nappies, too (because in NICU, you need have permission to parent). I remember being SO GLAD we could parent at least in that way. According to my posts, Kai was also very active today. It was good he was active, in that he was moving his limbs, waving his little arms a little… but very bad that it was probably in response to pain or over stimulation.

I remember having discussions with the nurses, taking photos of their notes, desperate to understand what was happening. There wasn’t great communication, in that they didn’t know and were doing all the tests and didn’t want to give us any information unless they knew for sure. They weren’t very transparent with us. It was such a hard day. NKH is just so wildly brutal.

Awkwardly, today feels harder, here in 2024 without him. At least he was there, that teeny tiny baby, and I could hold his hand and talk to him. Now my heart has all the feelings and just… he’s not here. He’s dead. He died. He DIED. And now all I have is all this love in my heart, and tiny momentos, photos and videos to show that he existed and mattered and was here. It feels… less. I feel like I’ve been left behind, and I know I’m needed here, with my other babies and my family and friends who love me. But I find it hard to not also want to be where Kai is. I wish we were all here together. I miss Kai so very, very much.

#grief #nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #glycineencephalopathy #teamMikaere #theMikaereFoundation #nkhcansuckit #cure4nkh from Instagram: https://instagr.am/p/DBI5R38oSQC/

On this day, eight years ago, 14 October 2016. This was such a heartbreaking day, and I found it really hard to look at these photos. Our boy was three days old, and we got the initial results back from his lumber puncture. On one hand, it didn’t look like a brain infection (like meningitis) which is both good, but also not (because meningitis you can treat, although with varying results).

We still didn’t know what was wrong and Kai was going into that awful apnea stage, where his lactates were high, meaning he couldn’t expel his waste gas/CO2 levels. He was upgraded from regular o2 to a CPAP machine, which forces the air into your system, rather than waiting for you to take a breath. That wasn’t working so well, so they intubated, and Kai was put on a ventilator to breathe for him.

We were so scared, and we felt so helpless. We blindly trusted his team to do what is best for him, but it was heartbreaking. We know now it was because he had toxic levels of glycine in his system. And that this is the window where many, many babies with NKH don’t survive. NKH is just the most horrific disorder, it is so wildly devastating. I think I cried as much on this day as I did today, if not more. My heart hurt then, in fear of my baby dying. My heart hurts today, now that I know what the horror is like (I was right to fear it – this anguish is all consuming and excruciating, never ending).

Still, on this day eight years ago, I got to hold him twice in a single day. I got to love on him, and whisper to him all the many ways I loved him, and I got to smell his little baby smell and nuzzle his beautiful cheeks. Today my arms are empty, and I miss him so much it physically hurts.

Kai would have been eight this week. It still seems incomprehensible that he is not here anymore. 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/JWwpm8S

#nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #glycineencephalopathy #teamMikaere #cure4nkh #nkhResearch #fundraising from Instagram: https://instagr.am/p/DBGUehlvEJk/

£On this day, 13 October 2016. Things were getting worse. It was only Kai’s second day ever, and he started showing signs of edema (fluid retention) around his little face. His brain activity wasn’t normal, so they put pins in his head to measure it (when I think about how painful that must have been, I feel sick. I could have intervened, but I didn’t know that was something I could have done). He was losing all his baby reflexes, also started in oxygen… everything was going badly. The team were beginning to make noises about preparing ourselves, that he might not make it.

Still, I got to hold him, after they started the oxygen, before they put the pins in his head. I was delighted to be given the chance to hold him. The third time since he’d been born (we counted and cherished each cuddle, they were so rare in those first days). Honestly, being in NICU is a nightmare. Only two people allowed at a time, having to wait in the parent room during rounds, having to leave to eat and sleep. Being separated from your poorly baby, it’s heartbreaking. So so so heartbreaking.

This is what NKH looks like. It’s hard, and it hurts, it hurts everyone. (I’m trying so hard to hold on to the idea that it hurts because we love, but my broken heart is having a hard time with the idea of loving through the loss of this magnitude).

Kai would have been eight this week. I miss him. I miss him with every ounce of my being, and the world feels so much less without him. 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 £8 for his 8th birthday, if you can: https://ift.tt/SduajmI

#nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #glycineencephalopathy #teamMikaere #theMikaereFoundation #nkhcansuckit #cure4nkh #nkhResearch #fundraising from Instagram: https://instagr.am/p/DBDvrKcC-xP/