Hi, I am new to the site. My baby girl was born in July with a cleft palate. It involves the soft palate and part of the hard palate. The doctors plan to do her surgery at 9 months of age. We did not know of her cleft until she was born so we had alot to learn from day 1.
I have been feeding her with the Haberman bottle but have been having many issues. She has reflux so my doctor recommended that I thicken her formula with rice cereal. She is also on the hypoallergenic formula. One of the big problems I am having is with the Haberman nipple. With just the formula, she stretches the hole in about a week and a half so that too much milk comes out even on the slowest setting. If I thicken with rice, it is ok until it gets too stretched out. Then I have to use a new nipple and the rice won't come through. The doctor suggested that I spoon feed her the rice and then follow up with the rest of the formula in the bottle. That is not only super time consuming (I also have an almost 2 year old) but also hard to know how much rice to give. Today I tried it and by the time we got to the bottle, she was too full to drink any. The other main problem I have with feeding is burps. I can't seem to burp her enough and she is constantly needing to get out another burp. I will get her to sleep, only to wake about 5 minutes later, and sure enough, she has another burp. This too, is difficult to deal with since I have another young child. Finally, she has alot of reflux even with the rice and we have also tried Zantac and Pepcid. She is sleeping in her crib with the mattress propped, but she often wakes shortly after falling asleep with either reflux or a burp. She also often refluxes when being burped and even fights being burped. So we have a frustrated baby, a frustrated mommy, and a frustrated 2 year old. Makes for an interesting afternoon and we all count down the minutes until daddy arrives home in the evening.
I would appreciate any advice that you all may have to offer regarding sleeping, eating, reflux, etc.
Thanks alot!
Michelle