Our first weekend home, we hit a series of milestones. Sam's Mum has been with us this first week to help ease us in, and she's been amazing. Small things, just being helpful and making sure we're fed and clean and have everything we need. I love watching her love on Kai - medical people aside, she's the person beside us to have spent the most time with Kai and he responds so well with her.
When we had to say goodbye, we felt a bit uncertain about how things were going to go. Sam and I managed - we knew we would - but it wasn't smooth sailing. In saying that, this weekend was the first time in forever that it was just us three. Just our little family, and oh. I can't even begin to explain how amazing that was. No medical people checking in, just time for us three. It was shakey, but so so freeing, and so so needed. I revelled in the joy that was the just-us time. I wonder if this is what it's like for other new families all the time?
Kai didn't make it easy for us though. There was a lot of vomit. So so so much vomit. And he pulled his NG tube out. I love seeing his cheeks free of tubes, and I love his determination to yank it out but the necessity and putting it back in is heartbreaking.
I'm glad Sam had the training, because it was on him to put the NG tube back in. We called a friend of ours who lives around the corner just to watch, just in case. She's a paediatrician, and spent some time in Africa developing an infant help program (very familiar with ng tubes). And with a swaddled squawking baby Sam inserted the NG tube like a pro. It was a bit nerve wracking for me, but I'm glad Sam was able to step up for Kai.
While Kai was squawking - we noticed his first tooth come through. I was unprepared for that little toothy peg, but there it was. Small little baby tooth, right there in his mouth. It blows my mind, because I forget that he's growing. I feel like we only just managed to get home, that we've only just got our feet under us before Kai is changing it up again.
Still. Loving being home. Loving being here with him. Fingers crossed we're here for the long haul, hey.
#ngtubebaby #ifhnkh #nonketotichyperglycinemia #glycineencephalopathy #nkh