Feeding Frustration

[Dummers]

My little Noelle (tricuspid atresia, TGA, and severe reflux thrown in for fun) is 11 mo. old. She has been tube fed for almost all of her life. We have been working with a speech pathologist and occupational therapist and trying oral feeds for a few months without much success. She's getting very mobile and I'm getting tired of following her around for the time she's on her feeding pump:) I'm wondering if anyone has any tips for getting her to eat orally. Thanks!

Shannon

[Chrissie]

Kylie had a ton of feeding issues. We had a very good OT from early intervention work with her and now she does pretty good. Does your little one eat solids? Do you have a NUK brush. It's like a toothbrush but had a hard end and they just chew on it to help. I couldn't get Kylie to eat at all, then the OT put her food to the side of her check that helped also. I get very frusterated because she wastes so much food trying to find out what she will eat. Does she take a bottle? I found dr. browns bottles worked the best with Kylie, I just switched her over to sippy cups and can tell a big difference in the way she eats. She is still on formula (she is 15 months old) if we don't give her that she probably wouldn't get enough calories because she just nibbles on food all day long. Kylie had her NG tube for 6 months. Sorry this probably didn't help. Just keep trying, I know it's frusterating! She will get there one day. GOOD LUCK
Chrissie

[Alli and Kyle Hicken]

Shannon,

I remember reading your post several weeks ago and hoping someone would give you some good ideas because we were in the same boat with our son Grant. He is 9 months old and fed via NJ his whole life. He finally passed a swallow study and we still could not get him to eat. Last week we met with a fabulous feeding specialist and we have gotten Grant to eat well for a full week now! I thought I would share a few things that are working for us in case they work for you. If Noelle is fed via NG tube, you might have hunger on your side and I would try turning off her feeds (check with you doctor of course) for a few hours before so she is actually hungry.

In our case, Grant's stomach has never been fed and is so atrophied that he does not know the sensation of being hungry, so we have to instead get him to want to eat based on flavors. We had previously been told to work with stage 1 baby purees and nothing was working. Our new specialist told us that a more shocking taste is appealing to kids with oral aversions and feeding delays. She suggested using sour things and really flavorful foods. She suggested that we start with tomato juice (can buy it in the cans or use V8 for variety), broth from really strong vegetable soups (I made a really garlic/onion batch and froze the broth in ice cube trays for later use), water drained from the vegetables we steam or canned veggies (apparently broccoli works really well), grape juice, and other flavorful liquids from our diets and thicken them with rice cereal. She also suggested taking the boring and bland baby foods and adding spices to them to make them very strong flavored (we have tried adding cinnamon to peaches so far and he will only eat it if there is additional spice). She gave Grant a super sour sucker and even though he puckered a lot, he devoured it. It seems so counter intuitive to be feeding my baby the same things that I would eat, but so far it is working and we are slowly expanding his stomach.

We have also been taught to take as long as we need to be sure that Grant is the one who feels in control of the situation. We don't try to clean him up at all until the feeding is completely finished so it is all positive. I just turn on some fun music, stick him in his bumbo, and expect that the feeding will take a while. We give him his own bowl and spoon and have lots of smiles and cheers ready for him when he gets something in his mouth. Our target goal is small, but he has consistently eaten 1oz a day and while it took 2 hours the first time to get him to eat that much, today was only 30 minutes and he took 2 oz. You might have already tried these things, but if not, hopefully a switch in flavors will help out. Grant also loves to suck on orange and apple slices. If you have any other tricks that you are finding work with Noelle, please let me know since we realize we have a long road ahead before we can transition away from the feeding tube. Good luck!

Alli
mom to Grant (HLHS, heterotaxy, etc.)

[Heart Mommy]

Isn't this the stress in all our lives.... the weight gain/feeding game.... Anyway here are a few things Gator likes and things that we avoided... He HATED potatoe anything forever. He gagged if he even smelled fries. But he loved frozen fruit and veggies, he loves Salsa (just the liquid part) he LOVES mc-n-cheese and ravioloi... he also loves melted cheese and dairy and Chocolate milk... You know squirt cheese... It is soooooo fattening.He used to only eat it off his finger but will eat it on crackers now... He had a hard time with warm foods and prefered everything room temp to cool... Strange I know... We also used the mouth scrubber thing. I would even let him dip it in things and let him try food off of that. He loves meat or beaf jerky... The pepper kind. We started giving that to him at 7-ish months... He would suck on it for hours and make a huge mess....But I loved that he loved it... He also likes pretzel sticks, pickles, lemons, popcicles, toast. All the foods he had control over, something that he had to use a spoon for, even though it was good for him he wouldn't try. He never did well with those melting things or cereal. He choked a ton. A TON. it was scary sometimes. But even if your Noelle chokes it may not be because she doesn't like the food, it is because it is not slinding down the way it should. I even had to pull over one time to clear his airway... Ahhhh... his sister tried to "share"...

Oh, good luck...

Brynn

[Dummers]

Thank you so much for your suggestions! I will give them a try. It's funny...I think that feeding has bothered me more than anything (even surgery) in this whole heart journey. I appreciate the help.

Shannon