Posted by Rachael
on 2/20/2009, 11:44 pm, in reply to "GI vs speech therapy"
69.138.127.146
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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