Posted by Jennifer E
on 2/22/2009, 8:46 pm, in reply to "Re: GI vs speech therapy"
71.206.105.176
I know first-hand that this is a tricky issue. Two months ago I cut my daughter's tube feeds cold turkey. It was risky and gutsy, but I felt my daughter could do it and she did. In two weeks she went from being fed 100% through an ng tube to being 100% orally fed. I don't think this would work for everyone, but for my daughter, she had never experienced hunger and for her that was what she needed. Good luck and trust your instincts. I had a great speech therapist who supported me "off the record" and I informed our pediatrician about a week into my experiment. I tracked EVERYTHING! Every drop of formula, wet diapers, poops...etc. I'm happy to talk over email ellisj@bus.msu.edu
--Previous Message--
: Hi, my son Brody is 8 months and also has a
: gtube. He is on 24 cal enfamil. I know every
: child is different so I am sorry I don't
: have advice, just wanted to share our
: experience. He has gone back and forth it
: seems with the bottle feeding. He has used
: the Haberman since birth and did well at
: first then started having more difficulties
: breathing and eating. We did the LTA which
: set him back again with oral motor skills.
: He then had the Gtube placed. The LTA failed
: and we went ahead with the Jaw Distraction.
: He did well again after the distraction but
: was still using the pump every 3hrs for
: 45mins to an hour similar to your situation.
: After his devices were removed he did ok
: with the Haberman taking a couple ounces
: then we would use the pump for the rest. His
: mic-key was the wrong size for him so it was
: a nightmare for a while until the Dr.'s
: finally listened to me, it leaked formula.
: When he finally got the right size
: everything improved. He was getting
: continuous overnight feedings up until about
: 5months. I stopped doing overnight feedings
: when he pulled out the extension set one
: night and I was feeding his crib mattress.
: He started solid foods about the same time
: and he loves food. He luckily took very well
: to purees, I just steam and blend foods for
: him. He now has progressed to eating food 3
: times a day. He was doing well taking 3 or 4
: oz from the bottle up until a couple weeks
: ago. He caught a cold, then got an ear
: infection and has refused to take more than
: a couple oz now. I just gravity feed him
: most of his formula now.
:
: I used to stress out about his formula
: intake and whether he was taking his bottles
: or not. I still do worry sometimes but not
: as much. His GI is keeping him on 24 cal
: 24oz/day I just try to make sure he gets as
: close to that amount as possible, tube
: feeding or bottle. He is 8 months and weighs
: 17 pounds so he is still on the small side.
: It's hard to compare your child with others
: when PRS makes things so different. I am
: glad to have this site where there are
: others going through similar situations. I
: take the advice and recommendations from our
: specialists but it has taken me quite a long
: time to realize that I am his mom and to
: trust my instincts as much as their advice.
: I know its stressful but it sounds like you
: are doing a great job
:
: --Previous Message--
: Hey everyone!
: Wanted to see if any of you had the same
: issues dealing with speech and GI clinic
: with tube feedings. My son is 6 mos and
: still almost strictly g tube fed. i know
: complete transition to oral feeds takes some
: time but im getting kind of nervous, bc
: since birth its actually gotten worse. He
: used to take 1-2 ounces via haberman and the
: rest tube but now hes only getting
: "tastes" of baby food and just
: plays with the bottle. Speech thinks he is
: not sensing hunger bc he eats every 3, but
: the pump runs about 45 min so really hes
: getting food every 2.25 hr. So i guess that
: means he doesnt associate food with filling
: up?
:
: So then comes the problem with GI and the
: dietician. He gets 24 cal 3.5 oz every 3 and
: they dont want him to wait til 4-5hrs. Plus
: he still eating (gtube only) twice in the
: night! I begged to cut out the third about 6
: weeks ago and they did give in. They said
: they will do a weight check soon and then
: decide whats best. I believe hes at a
: healthy weight (17, almost too healthy),
: although he did lose for a while in his
: early weeks. I want whats best for him
: nutrionally but i think oral motor skills
: are very important and hes just not getting
: it!!! any suggestions/experiences/advice
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