Good news and bad news.
Good news: Soren is home. No more wires.
Bad news: He has an awful case of reflux, so whenever he eats, he makes this horrible grimace, tries to throw it up, and looks awful. Then he tries to eat more because he's still hungry. When he used to get hungry, he'd cry a little and scrunch his face up. Now, he goes from zero to scream in one second. No warm up. He's just out of the bull pen full out screaming, in a pitch we've never heard. If Lisa hadn't been there the whole time, I'd suspect that the nurses did something awful to him.
He is on antibiotics and will be having more tests done next week. He's also going to the pediatrician today.
This all makes me much more sympathetic to those parents (like Joel and Jenni, and Daniel and Christi) who have unusual pregnancies or kids with different needs. Johanna and Rosella were born at 10 days or something ridiculously early. Daniel's second son has a form of autism and about 30 food allergies (I think).
I'm now gearing up to start making lists of everything that Soren will be allergic to. I'm imagining raising Bill Murray in What About Bob?
But, poor guy. The most infuriating and most helpless feeling is watching this little guy in total pain, without any means of communicating how to help him. Lisa and i were so frustrated-- we nearly started hitting each other with chairs, WWF style.
We were looking forward to a nice low key summer, but this is a whole new thing. We're pretty much under house arrest, in order to keep our boy safe until he gets a bit older and stronger. So we'll be watching LOTS of Netflix, cooking a bunch, trying white wines, and wondering what it feels like to sleep more than 2 hours at a time.
Thanks for all the posts and phone calls. They go a long way- - we can totally use the support.
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"It kills you to see (your kids) grow up. But I guess it would kill you quicker if they didn't." -Barbara Kingsolver
5 comments:
oh, the dreaded reflux. i'm sure they've told you "this is a common preemie issue". i hated hearing that. oh, so that makes it okay that my kid is screaming at decibles that make my ears bleed? we had to keep the girls' cribs propped up on one side for almost a year, to help them sleep. luckily they never had to get on any medications for the reflux, but there is stuff out there that can work wonders. it just really sucks to have to put your kid on ANOTHER medication. like always, you are in our prayers, and we love you all.
Yes, the dreaded reflux. Peyton has a pretty strong case of it and thankfully after all the tests and the doctors appointments, we figured out how to make it work. She takes medication twice a day, sleeps on a wedge, and wears lots of bibs:) We'll be praying that this reflux can be an "easy fix" for now...
lily as a new baby=watching "the wire" around the clock. we'll be praying for a solution to the reflux issue.
my heart goes out to you man, it's awful to watch your little one suffer. Just AWFUL. I remember more than once wanting to trade places and be the one experiencing the pain...like in a sci-fi movie or something...
bummers.
Noah is gluten-free and caisen-free. He doesn't eat anything wheat or milk. But gluten is in so much other crap too, like oats and barley and modified food starch (which is in EVERYTHING) and all kinds of ridiculous stuff...so he is on a steady diet of GF/CF foods...like veggies and special chicken nuggets and stuff. HA. Thankfully, he doesn't know the difference since he has never had anything else...
you've probably got this covered, but is Soren getting occupational therapy for eating? i work with little ones (and big ones) all the time who are working on getting off of g-tubes and all types of fun things like that. There are OT's who are feeding specialists who do all sorts of crazy facial massaging and have funny looking vibrating stick-type things to ease a person into eating better. if you aren't seeing a feeding specialist, I could definitely hook you up with a few helpful tools/tips if you so desire. hope all is well.
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