Delays

As usual with Eliza, getting too optimistic or making anything resembling plans for the future seems inevitably to lead to disappointment. Bah.

Last week, Eliza's care team had suggested that she had a good chance of "going to camp" (ICN superstition - no one likes to say "going home" lest they jinx it for her) on Wednesday of this week. It was looking like a good possibility for a while, too...

I've started and discarded two drafts of this post already. It's so frustrating and exhausting, and the specific details of the last several days are already blurring in my mind. (Sleep deprivation might have something to do with that...) You'd think by now that we'd be able to handle whatever life in the ICN can throw at us, and this latest complication and delay is perhaps, in the grand scheme of things, a minor speed bump compared to things we've already dealt with - but somehow, having glimpsed the prospect of finally making our escape from the hospital, having it vanish again, even for a few days, feels like the final straw.

For the last several days at least, and possibly longer, Eliza has been having trouble with her feeds. She'll be irritable even while eating, sputter and drop her heart rate (bradycardia) suddenly mid-feed, stop sucking effectively at the bottle and instead waste time and energy inefficiently chewing on the nipple, have spit-ups even hours after finishing the bottle... it just generally hasn't been working right. Especially frustrating since before her last surgery, she seemed like she was getting pretty good at feeding....

So no going home from the hospital until we can figure out what's causing her to have these problems. There's a wide range of theories at the moment - here's some of the possibilities (and what's being done to investigate):

1. Intolerance of the fortifiers that are being added to her milk to help her grow (we've tried several different kinds, and are currently taking them out entirely for a while to see if that helps, but eventually she'll need to have these put back in in some form)


2. Getting tired out / frustrated by needing to eat so much more food than she ever needed before the surgery (not much that we can do if this is the problem...?)


3. Reflux becoming worse due to the increased amount of food she's taking in (so we're switching from Zantac to Prilosec, in case that makes a difference)


4. New bottle nipple being too fast-flowing for her liking (so we're trying a slower-flow nipple for a bit)


5. Ear infection (going to examine her ears today)


6. Urinary tract infection (going to check this today too)


7. Thyroid dysfunction (drew labs to check this today)

At least right now we have some actionable ideas as to why she's having trouble with the feeds. We've been at the hospital for the last three days, and did "rooming in" with Eliza the last two nights to keep an eye on her and try to help her eat, and for most of that time, the only theories anyone seemed to have were #1 and #2 above - one which is unavoidable, and one which can only be solved by time and growth. Plus, up until now, her hospitalization has always been a medical issue - it was starting to look like despite apparently finally having no active medical issues that would keep her in the hospital, the developmental issue of her feeding skills would keep her there anyway, which was massively frustrating. That might still turn out to be the case, but it might also be a new medical issue, which would at least suggest an immediate course of treatment. We'll hope to find out some more information soon.