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What we’re up to… October 24, 2024 at 10:00AM

By 24th October 2024 No Comments

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/

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