This seems to come up pretty frequently, since babies with clefts have a harder time feeding from the bottle and are more prone to gas and reflux. Here are some tips from parents:
"Have you worked with an occupational therapist or physical therapist? Our occupational therapist was a lifesaver when it came to feeding and issues with the ng tube."
"Our little guy also had reflux. To help, we had him sleep in a bouncer. He slept in that for the first 6 months of his life. It helped with the reflux. Also, I discovered that Mylicon did not work for his gas, but that gripe water worked great! The brand we use is Little Tummies. We still use it when he has surgery because the anesthesia causes such bad gas. I gave him the max dose after his last surgery and he passed gas all night long and felt much better. We also used Good Start. It was the most gentle on him."
"We had the same feeding issues. We tried different nipples in the NICU and the only one we had any luck with was a regular Avent nipple that we cut a slit into because of the weak suck. This worked enough to be able to stop the NG and come home on a formula called Pregestimil as he was not tolerating breastmilk. He was on reflux medications which never seemed to do much but thickening the formula with rice cereal worked well since we were already using a cut nipple. It made it a sludge like consistency. At 3 months he had ear tubes put in. Did not help the fussiness. At four months he was taking enough formula but not gaining weight. Because of the poor wt. and extreme fussiness we tried Neocate from home health and that did the trick as he gained a ton of weight and was much less fussy. As he got older his GI issues became more extensive and by age 1 he had a G-tube and stomach surgeries that I won't go into details on.
"I would keep working on volume and see if the fussiness is related. Therapists may have some other ideas but it sounds like you have already gone that route. A GI doctor may be able to come up with more ideas if its reflux. Let me know if you have any other questions. I would try to get the feeding issues fixed a bit before going into surgery since nutrition directly afftects healing."
"Our boy (bclp) had really bad acid reflux when he was a baby. Our pediatrician recommended Similac Alimentum and it was amazing. It immediately helped his acid reflux and the throwing up became almost nonexistent (although we still employed other measures like raising one end of his crib at night, propping him up after feeding, etc.). The only downfall to the formula was that it was really expensive. It cost $25 per can and although the scoop was smaller than with other formulas it still was really pricey. So knowing that I don't know if it's an option or not, but I thought I'd just put it out there. We were really lucky that at the time we needed it our boy was a foster baby and WIC paid for it. Good luck. It sounds like a really trying time for you all."
"Our daughter (no cleft or anything) had really bad reflux and gassiness and we put her on Enfamil gentlease and it made a huge difference. I couldn't lay my daughtet down flat on her back after she ate for a good half an hour at least. We currently have my son on Enfamil Nutramigen and he is a totally different baby since we put him on it. Nutramigen is the Enfamil version of Alimentum. It is totally broken down and hypoallergenic. Gentlease is partially broken down."
"If you are still have feeding issues, it would be wise to try and get a referral to the FUN clinic at Primarys. It is a group of people who work with your child to solve the problem. My son had feeding issues for a year and half, and it was not until we went to the FUN clinic that we finally figured out what was going on. We got the referral from our ENT and also our pediatrician. It takes a while to get an appointment, so I had them put me on the waiting list, and I got an appointment for the next day!"