What we’re up to… October 12, 2024 at 10:00AM

On this day, 12 October 2016. Oh bub. Looking back at these is hard – we were so in love with him and terrified (and clueless) about what was going on. He was barely a full day old, and deteriorating. He hadn’t fed (apart from a glucose solution through his cannula), hadn’t opened his eyes, hadn’t cried. We didn’t know it, but this is the beginning of the apnea phase of NKH. We also were separated our first night, because you can’t sleep in the NICU. While we were gone, there were more cannulas inserted, and a lumbar puncture was done. It’s so heartbreaking to know what we know now, how painful those things are. How these things are done on purpose when you’re not there.

This is peak NKH. This is what Nonketotic Hyperglycinemia looks like. Many babies born with NKH don’t survive this stage. Kai almost didn’t, but I’m getting ahead of myself.

We were exhausted, I was in so much pain post birth, but we were so very hopeful, clinging desperately to hope and love. Because he is so very loved, from this moment eight years ago, to right now. Fiercely loved, and so very missed 💔

Kai would have been eight yesterday. If you’d like to help celebrate his birthday, please consider donation £8 in his memory:
https://ift.tt/LoNIpDP

Please donate, if you’re able.

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