update

I really want to get an update in, but there's a lot to update on and my little brain is still quite jumbled. I'm not sure how to take what is in here <points to head> and put it here <points to computer> because I'm still trying to make sense of what our reality even is and there's also a lot to explain (nothing huge is new, exactly, it's more along the lines of our thoughts and decisions about various things). I decided it would work best to break it up into a few post to keep the length more reasonable. So, this one will be an update on how Emma is doing now.

To continue from where I left off, we arrived home on Wednesday evening of two weeks ago (the 4th), went to bed, and almost woke up to my sister, Ani, and her family, then my parents, all arriving for a pre-planned visit. It was reeeally nice to see them. A couple weeks before that, one of my other sisters & her family had visited too. (It had been so long since we'd been able to see anyone.) So, the hospital stay ended up being right in between the visits. They have all since left, and we miss allllll of them. But now it's time to update. :)

She's been home 12 nights now. Nighttime is when she gets her formula and about 5-6 of those nights (sprinkled throughout, not always consecutively), she hasn't had any feeds. We can't seem to make three bottles of formula a day work for her. Like, she just can't tolerate it. So we do one bottle, given very slowly, and then try to stick to soft foods only, by mouth, to try to get the rest of the calories she needs in. No more solid food.

We're trying to get her up to at least 850 calories a day, but it can be really tough. It's pretty hit or miss on whether or not this adjustment works, but it's better than what seems to happen when we try to give more feeds. She seems to be perking up...usually. But even that comes and goes. Today was a pretty tough day for her. She also hasn't been able to tolerate feeds the last two nights. But I think she's gotten about 600-700 calories by mouth, so she's getting something in.

It's like a rollercoaster. Some days hope comes easily. Some days it's harder. To say it's stressful is an understatement. But it's pretty amazing to get to be the mom of a daughter like this. She is one of the strongest and funniest people I've ever met. I feel the same way about my other kids, too. They're so caring and loving. I'm so proud of them.

I have so much more to say (like we are still working to get palliative care set up), but I've already taken too long to get this written, so I'll post this and write more later. Thank you for checking in on us. I'm sorry I'm so bad at replying (I kind of feel like I'm drowning), but please know your messages mean a lot. ❤️