What we’re up to… October 15, 2024 at 10:00AM

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/