What we’re up to… October 30, 2024 at 10:00AM

On this day 30.10.2016… We could NOT get enough of his beautiful face. There are literally hundreds of photos of every angle of his face from this day. He was so awake, and looking at us and interacting with us. It was literally the most beautiful thing I’d ever seen, my beautiful baby looking back at me. Kai was a completely different baby than he was a few days back.

Even better, he started breastfeeding on this day. Briefly, but he figured it out and I was ELATED that breastfeeding was something we’d be able to experience together. I’d spent so long pumping (and hated it) that breastfeeding by comparison felt like such a win. Something long fought for (on both sides) and I’m pretty sure I cried when he latched (I mean, I was also a very tired NICU Mama who was still coming to terms with the idea that her baby wasn’t going to die imminently, so tears when anything happened, good or bad, weren’t unheard of). Still. We did that. Together.

I’m very immersed in this early days at the moment, but I came across a photo of me and Kai around 3 years old, all cuddled up together and I cried because I miss him so very much. I just do. And I wish he was here to scoop up and it hurts so very much that he is not.

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DBvoE1wPoNf/