Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Hi , Our had different problems than your has (her heart condition was very minor, for example) so I don't know if my experience will help, but for what it's worth...Yes, we went pretty much straight from a g-tube to baby food. never got the hang of eating from a bottle. She had a very severe cleft lip and palate, and probably some problems coordinating suck-swallow-breathe. Plus she had two surgeries on her mouth area in her first 10 months, so it just never worked out for her to take a bottle for us. She had a g-button put in when she was about 4 months old, up to then she was getting her formula through a nasogastric tube. Because of the coordination problem we were told by " experts " early on that she wouldn't probably learn to eat orally until she was about 5-6 years old. Well, she's 26 months now, and has been getting all of her food and drink orally for 6-8 months. I think we had an OUTSTANDING occupational therapist advise us in the beginning (she did not see regularly, but allowed me to bounce problems and ideas off of her on the phone from time to time), and this is part of what she told us that seemed to work: 1) Get off the drip. It was the first thing she told us. The drip was wonderful for us, because we got a good night's sleep, but once we were rested it was more important to allow to get hungry naturally, the way any other baby would, than for us to sleep well. 2) Don't worry about how much she eats, keep it pleasurable and entice her to enjoy the flavor and experience of eating. We did try to give her the bottle at virtually every feeding from the first day until she was well over a year old. What we did was try to make sure that she at least had the taste of formula in her mouth before we fed her through the g-button. I guess the best scenario is for them to get the taste and be fed through the button at the same time so that they equate the two (becoming full with the taste of food), but my husband and I couldn't coordinate that. 3) Be careful not to overfeed her, or cause reflux. If feeding consistently causes pain (or vomiting) it's a bad thing. Sounds to me like already has that desire to eat, which apparently some kids lose when they are on g-button feedings. So, that's half the battle at least! The OT that helped us originally also told us that some kids with CHARGE especially love strong flavored foods. (I'd guess that the candy cane loved falls into that category!) We have found that generally fills that definition, too. She isn't very interested in things like mashed potatoes with butter, but she can eat hot salsa without breaking a sweat. We didn't have a lot of luck with baby food at first. Most of it is pretty bland, isn't it? The same OT suggested putting stuff in it that was stronger flavored. Like putting cinnamon in applesauce, or salting or putting lemon juice in vegetables. We received a whole list of these kinds of supplements from a speech therapist who had started working on 's feeding issues. Our pediatrician kept wanting me to give plain, unsweetened yogurt, but she wouldn't eat the stuff. However, when we gave her some good old sugary cherry yogurt she gobbled it up! We were also told by that one really great OT that some kids have problems with certain textures. could eat the semi-chunky baby food (step 2 Gerber) before she could drink liquid. In fact, it was the liquids that kept on the g-button so long. She was feeding herself real well, but couldn't quite get all the liquid in that she needed. I guess this is the LONG answer to your question about food. Yes, you still have a good chance of feeding orally, I think, going straight from g-button to baby food. But you might find out if it's OK to at least give him a taste a couple of times a day of formula, or in a couple of months maybe a spoonful of applesauce, just to keep him interested. Hope this helps a little. Brighton Mom to Tessa (7), Emma (5) and --CHaRgE (2) Wife to Littleton, CO __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 this sounds very incouraging he already had the reflux surgery so we are aware a the vomiting issues plus he has a small stomach we learned just how small the day he ad the mic key button put it he cant handle the five ccs in the ballon can only handle two for now we got home and hooked him to the pump and 1/2 hour later he started gagging poor guy like i said befor every thing we do with him the cardiologist has to have the final say in it as we have the danger of congestive heart failure along with wasting caloiries trying to feed orally I cant wait to talk to them on monday we really need to up his caloires he is so skinny he is getting longer he has finally grown out of newborn sizes but still..... tomorow we are tryng a regular lollipop see if we have the same reaction hehe I do know he loves it when you kiss hom on the mouth right after eating something sweet too .... http://community.webtv.net/maryechick12/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 , Has he had a swallow study done? I would make sure with his speech pathologist, feeding team or whoever sees him for his feeding issues says it is okay before pursuing it. If it's all okay with them, I imagine it would be okay. There are thickeners out there (Thick It is one of them) that will thicken up liquids for kids who don't have a real controlled swallow. Perhaps this could also be an avenue you might explore. Good luck, the feeding issues are still ongoing for us as well...someday I hope!!! Weir Mom to Kennedy 3.5yr old CHARGEr, 12, 10, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/kawfolks ICQ #1426476 " In the depths of winter I finally learned there was in me an invincible summer. " -Albert Camus question on feeding has a g tube and soon I expect they are going to want to start getting him to eat orally. we have tried a bottle a few times but cardiologist had said dont push it till he is bigger so we continue with the pacifier and bottle on limited basis he seems to really hate the bottle (yes I know why and all that but today I let him taste a candy cane (just small taste to see what he would do)he went crazy on it he reminded me of a baby pig or something even tried to grab it out of my hand to keep it in his mouth(pretty good for a kid early intervention said could no do this and everyone else said was blind)has anyone tried just skipping the bottle all together and just moving on to baby food???I mean as long as he has the g tube to ensure he gets every thing he needs can this work?? it seem if he has a choice he doesn't gag at all .....he goes back to cardiologist on monday and will call the pediatriction ask them this as well ...... just wondering thank you mary... http://community.webtv.net/maryechick12/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Hi , Yes, our daughter never did do the full bottle thing. She went from g-tube to baby food, but she was older. However, the doctors told us when she was littler that it was an option to skip the bottle altogether due to the t-e fistula, cleft palate, trach, etc. She drinks well from a cup and also loves to use a straw. We continued her pacifier all the time she was little so she would have some oral stimulation before she could eat orally. Best wishes, Mom to Kendra, and Camille -- Quote Link to comment Share on other sites More sharing options...
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