rachel&joe

lemen99

sorry I just saw this:

Lemen, how is a delayed swallow diagnosed?  in the past, she was quite the choker/gagger.  Oddly enough, this has improved alot recently.  I don't know why!  if anything, we have been thickening her food less than before (as i said before, we have tried everything to get her to eat more!).

Basically Andrew was eating a little (2 oz?) and then pulling away from the bottle, often visibly choking (or starting to choke but would pull away and catching himself).  But then he'd come back for more (he was still hungry), but then pull away again.  We couldn't get him to eat with SO much effort and so many tries. I described it to the doctor as "he's trying to eat, but then all of a sudden it sounds like the milk gets stuck in his throat and he can't eat." where you can hear it make this sound, and then he'd pull away.

We talked to the GI doctor and said we had to figure out why.  They scheduled a swallow study and endoscopy - with main concern and justification being that suddenly he kept choking/gagging and he never did that before. 

During the Swallow study they saw that his swallow was delayed.  He never had any kind of oral coordination issues before (just reflux)  The neonatologist later told us this is because we started solids early and his sucking reflex was weakening.

Basically the milk was pooling in this throat and heading towards his trachea and then he would swallow it.  The SS showed "deep penetration" where he almost aspirates but he doesn't aspirate (thank goodness).

The "fix" is simply thick.   His milk is really thick. 

 Let me know if you have any  more questions!

 

We have had a problem in the past where his reflux meds needed to be adjusted and he's stop eating about 1/3 of his bottle and freak out. 

 

 

Sweets2005

Since I was also going to make a post to Rachel, I will just jump in on this one if you don't mind!

Rachel, thanks for the coupons!!!! Someone else sent me coupons but I don't remember their bump name so thanks to you,t oo! Formula coupons are always needed and appreciated!

Rachel&Joe

you are very welcome sweets!

Lemen, that is very helpful!  after reading your response & the responses from others, I am starting to think that it's a reflux thing.  I just fed her this morning and she did great & then 2 seconds later it all came spouting out.    I think her reflux is bothering her (has gone pretty much unmedicated until this point).  hopefully we can get in to see the gi this upcoming week.  the nurse was just here & she only gained 3.5 oz in 2 weeks.

TriciaJoy

I'm butting in, too.

 I was talking to a friend of mine about the eating stuff. Her little guy was a 24 weeker, but had a very, very similar course as Robbie, so we're always comparing.
Anyway, she sent me this link:

https://www.uchsc.edu/cfii/Documents/Ross%20Browne%20Seminars%20article.pdf

 

which I found interesting.
Also, she talked about wishing she'd pushed less. And I agree. Sometimes I wonder if we were *SO* focused on good weight gain that we just pushed, pushed, pushed. Even termies have days they're not interested. But we're driven mad in the NICU "MUST EAT X in Y time" and suddenly we're likel "OH NO, SOMETHING IS WRONG."

Anyway, she also brought up a few other things they can check. Throat & ears, and maybe a thrush test. It doesn't have to be reflux, though that's certainly common.

 

lemen99

Hope you figure it out. THat's good advice Trish. If he's happy I wouldn't worry - it's when he seems miserable that I worry!