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Feeding Issues? Update... forced to wean? - Page 3

post #41 of 42

My son was born with a birth defect that required a colostomy.  Over the summer and fall *something* happened, we're not sure *what*, that caused 'dysmotility' in his colon.  (In plain terms, he quit pooping)  I could hear what I later learned was the liquid stool inside his distended (gigantic) colon, moving around, but not coming out. 

 

He ended up with a GI specialist, many, many tests, 6 weeks all told in the hospital, eventually a feeding tube and a colostomy revision.  (In plain terms, that means they made the colostomy hole larger.)

 

I did temporarily wean twice.  Once when he was becoming horribly distended in the hospital with even 5 cc's an hour slowly dripping into his system via feeding tube.  But I made it CRYSTAL CLEAR that I was doing this only because I could see he was not tolerating ANYTHING, not because I agreed that it had anything at all to do with breastmilk.

The second time was after the revision surgery--what happened before that surgery was this:  He was doing well.  Then, the doctors changed a few things at once.  One thing was nursing.  So, after the surgery, we *slowly* added things back in.

 

I however INSISTED on resuming nursing, to my GI doc's dismay.  He actually said "He's had enough of 'that'"..

 

 

I knew what I knew.  I KNEW I had a healthy, thriving baby from birth up to 6 months.  I knew things changed around the time we started solids.  I didn't know if that was a coincidence or not, but I knew that if it was related to breastmilk, we would have been back at that hospital with issues at 9 WEEKS, not MONTHS.  Many nurses, a doctor, and even my ped though he wouldn't come right out and fully disagree with the GI doc....I could just tell he also could see my point.   Anyway, now my son is almost 14 months.  He is on a feeding tube 15 hours a day.  That's a dramatic improvement over 24!   We were just allowed to start solids this week.  He does eat, he does not appear to have trouble with chewing or aversions or anything.  He is simply inexperienced.  In the beginning, that's what we thought we were dealing with, then the health issues made themselves hugely obvious.   And we ARE ARE ARE nursing.  On demand.  His weight gain is excellent and the feeding tube, yeah it was a surgery, yes it is formula.  No, it was not a big deal.  I simply kick myself for not going back to his surgeon before the GI doc.  I think he would've figured out the true issue with his bowel and saved us a lot of tests.  Not to mention that supposedly, according to a scope, my baby had evidence of irritation to his esophagus and that meant reflux and Zantac.  I question this now...he just got retested because we need to switch his feeding tube---there's NO evidence of it.  There also was no evidence that he refluxed on his earlier upper GI tests.  He also was never a fussy baby and NEVER spit up.  Go figure.

post #42 of 42

I have a dd who also  has feeding issues, had a tongue tie clip, has a high palate, and slow weight gain. I was told by the feeding therapist to always make sure she ate solids first before she nursed (I think she was around 18 months at that point), which is kind of like pushing weaning. I tried but it didn't work very well. I still wonder if I should have tried harder, as she is still behind, but felt that I just couldn't watch her cry for milk when I made her breakfast. Anyway, what about giving breastmilk in an open cup fortified with concentrated breast milk?

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