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AnyMama's of G-tube babies or babies who have weaned from tube?(intro)
Hello-
My son is 12 months and was born with a heart defect (unknown to us or the doctors until after birth). He underwent a surgery with complications and ended up in the hospital for over 3 months when he was born.
We brought him home on an NG tube with hopes of being done with that in 6 months....fast forward through a g-tube surgery we are still completely tube fed. He has sensory issues with eating by mouth and went from taking 50% of feeds by mouth to less than 5% by mouth.
Do any of you have experience with tubes? It feels like I am getting nowhere with his feeding. What has worked for you? Are there any good sites or blogs you can list that I can check out? We have no aspiration issues...just sensory and aversion to things in his face. He has been tube fed since birth. Any successful weaning experience?
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Re: AnyMama's of G-tube babies or babies who have weaned from tube?(intro)
Are you working with an SLP?
My daughter has had a G-tube since she was 4 months old. Like your son, she used to take quite a bit of her feed by mouth (when we bottle fed), and then her intake dropped. It's been a long and hard battle, but just one week ago DD took a whole bottle of stage 2 Mangos in two sittings. It was a total surprise. Even more surprising she has continued eating. She has polished off one container of baby food each day this week. We still have a ways to go, but this is a huge step in development (and we've celebrated).
Like your son, DD was/is orally averse. She spent 4 months in the NICU and was tired of everyone always stuffing things in her mouth. Her SLP has helped a lot in desensitizing Lily's mouth (and it getting Lily to trust others when it comes to putting spoons in her mouth). Beyond recommending an SLP, all I can say is that it is a long and heart breaking road - just hang in there.
Thanks for your response. We are working with an OT weekly and then every few months we go back down to the children's hosptial to see the speech therapist there. They both talk every week about him though.
Wow, way to go on getting the whole bottle of mangos! that is a huge huge step. My son likes cheese puffs and we have discovered that he tolerates (when in the mood) a take and toss sippy cup with water. He only takes a couple sips but at least he doesn't scream anymore.
It is such a slow and long road! Often it is so easy to get discouraged. Thanks for responding. Glad to know things are moving forward for your DD. I definately feel like he has a fear from being messed with so much with the NG tube and ICU time.
I think that's great! DD's oral feeding started out like this too. She could never take a large volume of water or cheese puffs, but I think she liked having control of what she put in her mouth. Her desire for independence has always been one of her biggest strengths, and her biggest obstacles. The Take and Toss Sippy cups are great because they leak just enough (DD uses those too).
I don't know about your son (I can't recall if you mentioned this), but my DD has always had an issue with vomiting. Anytime she would get food in her mouth, she would freak out, gag, and vomit. Just about a year ago, she started grabbing for food on our plates and putting it in her mouth. We were very hesitant at first (we didn't want her to vomit). But, we have started to relax - and I think that is making a difference. Still, there are some food that she can't handle (chips, for example), but through practice (on her part and on ours), we have learned to deal with that together. As a result, her vomiting has decreased overall (even with her tube feeds), and she gets more practice with food. Just something to think about as your son begins observing and imitating you and your SO more.
It sounds to me like you guys are doing a great job - Working with a specialist, giving him many opportunities to practice eating/drinking. If you haven't already, you may want to ask your OT about NUK brush, or other desensitizing tools. GL mama!
We do have the nuk brush and he likes to do that himself. Control has to be his to have success with him. I think anyone with the experiences of hospitals and ng tubes would feel that way too. We are trying to let him do things but I am so afraid of choking since he hasn't eaten much food. Crunchy is his favorite right now. The liquids are tough. I keep trying everything from orange juice to shakes. Some days are good and some are not so good. It is just such a long road some days that I like to see som success stories on the days when I feel like he will never eat by mouth.
He does not vomit but he does gag. Until it is a food he likes and then he can take it usually.
The take n toss cup was a happy accident to find! I tried everything from the honey bears to the madela special needs feeder to many straw cups. One day I thought I am trying this because it is cheap so it may leak and he needs that since he has a weak suck. And it worked!
Thank you for clarifying... I think I have to apologize too. I've been super sensitive lately. I got bent more out of shape than I should have. Feeding just stresses me out so, so much!
My DD's right vocal cord is paralyzed. If you are kind enough to share any insight you may have about vocal cord paralysis, I'd appreciate it. But, I understand if you would rather not.
Again, I apologize for my snippyness.
We are starting to wean off of bolus feeds/night feeds and get DD to take more PO. She is 18 months. Oxo makes a great toddler cup and we used that and now she is able to take milk from a sippy cup, a straw, or even a regular cup (and yes once a martini glass). We had to get her weight to a place where we have a little freedom to experiment with a hunger based wean and we are just starting to get there. We do pouches of food and veggie sticks.
Our OT and SLP are working with us, but we also know if this is not successful we are going to need to look at outpatient programs at hospitals. This will mean taking FMLA leave if we do an intensive program, but definitely worth it. I also need to look into Graz tube weaning program as well.