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Preemies
Just frustrated and needing some encouragement from mommies who've been there
Scarlette got to have 5ccs of Elecare in a bottle today. She is being fed 17ccs through an NJ tube currently, because she has unexplainable distention in her abdomen when she eats. She can suck, swallow, breathe just fine but when she eats she just fills up with air- except she doesn't do it when the feeding tube is in her small intestine 
The NP told us there is no physiological explanation for this. The fact that she took a small amount of food with no bloating is great 
Has anyone experienced this type of distention before? She'll present signs of NEC but it's never been NEC, she's had a barium enema and a contrast study from above on more than one occasion with no signs of Hirshsprungs or stricture and she's negative for CF. Everyone is baffled and waiting for her to GROW OUT OF IT because they have no other ideas as to the cause.
She was four months old this week and all she has to do to go home is digest her food properly. She can eat/breathe/poop just fine. They took her pulse ox off this week. She's in an open crib maintaining her temperature. She doesn't apnea or brady. She's doing amazingly well for a 25 weeker and for that I am truly, truly grateful.
This is just so hard. They have to try feeding her stomach, working up to volume over a week, then watch for distention for a week, then try her on breastmilk, then watch her on breastmilk, then try bolus feeds, then watch her on bolus feeds...
It's so frustrating. She's not coming home this month and maybe not next. And if she distends on anything we try? Then we're back to the drawing board again with no answers. I am feeling so discourage and worn down and have no idea how we're going to keep managing.
Any ideas for me? If not, have any of y'all had a 6 month or so NICU stay? Did you survive it mentally or have a total breakdown? I hate leaving her now, she's so alert and wants to be held often. But I'm still pumping all the time in hopes of her being able to nurse again and I am so exhausted. I need a little pep talk I think
Also, I wrote out Scarlette's birth story for the March For Babies and thought I'd share it here b/c I liked reading other preemie mom's birth stories.
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Re: Just frustrated and needing some encouragement from mommies who've been there
First, ((HUGS)). A NICU stay this long is exhausting. My DS was in for almost 5 months, and it was the most difficult thing I've ever done. To not know where the finish line is makes it even harder.
I'm sorry I don't have any thoughts about her feeds - I can only imagine how frustrating it is. The only thing I have to offer is that hopefully once it clicks it will go faster than you think. I know NEC is scary stuff, so it is good they are being cautious, but it's hard when things move so slowly. DS had a NEC scare a few days before he was supposed to be discharged. It bought him three more weeks (one entire week NPO while he was on antibiotics - which sucked b/c he was a hungery, miserable little boy, then a week - 10 days building up his feeds, then a bunch of days of observation.)
I hope that she does grow out of what ever is causing the distention. And, it's awesome you are still pumping. I'd just be careful to take care of yourself (and if it means skipping a pump or two in order to get some sleep, then do it!) Good for you, mama! Hang in there - you are doing your daughter right.