New to the site, questions about reflux and feeding

[mrobida]

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

[mookie59]

First - Congratulations on your new baby girl!

Here's our story of cleft (hard palate/soft palate/lip) and reflux. We have custody of our 11 month old granddaughter who was born with the cleft. I was in the birthing room (we also did not know about the cleft until she was born), I was with her at the children's hospital she was airlifted to and began keeping her at 2 weeks of age since the parents were overwhelmed by her needs. So in essence I've been her "mommy" for most of her life.

She had surgery of her lip at 4 months, surgery of her soft palate & ear tubes at 6 months and surgery of her hard palate at 10 months. She's had reflux since day one.

We started out trying both the Mead Johnson & the Haberman but ended up using the Mead Johnson bottle which has a long slender nipple with a X cut in it. You squeeze the bottle as opposed to squeezing the nipple on the Haberman.

She was given Zantac at 3 weeks and it helped her for a few months then just quit working. We then was given Prevacid. The Prevacid has been awesome for her. It's stopped her fighting while drinking, it's stopped her burping up her formula and it's stopped her crying & crying with a belly-ache. The Prevacid was given as a soluble tablet mixed with water at the beginning - now that she has some teeth she simply chews them up. But for us it was the miracle we needed. Trust me I know your frustration.

We started mixing Rice cereal with her formula at 1 month. The rice cereal constipated her & made her reflux worse so now we use Oatmeal. And even today I still mix Oatmeal with her formula to make it a good consistency for her.

For the first 5 months she rested, played, slept and stayed in either her bouncy seat or a swing so she would be in an angled position. That helped as well. We always held her at an angle while feeding her then sat her at a similar angle after wards. She learned quickly to burp on her own in the sitting position. Burping was an adventure. She needed to but often when she did the formula came up too. We learned to sit her up on our legs, lean her chin forward on our right hand and "beat" her on the back. I used the word "beat" because it felt like we was hitting her too hard but evidently not.

She fought drinking her bottle, burping and sleeping for a long time. And it was frustrating. The Prevacid helped a lot but so did just learning what worked best for her. You might want to try letting her sleep in a car seat, bouncy seat or swing for a little while to see if that works better for her than the crib.

Taylor weaned herself to a sippy cup (Gerber Soft Spout Transition cup) with no valve in it at 4 months old. From that time too her reflux got better. It seems with the Haberman & the Mead Johnson we were "squeezing" air into her tummy but with the sippy cup it's more gravity flow with her controlling the flow.

This is long and I'm sorry for that. But I want to give you hope and I also want to encourage you. This time will pass quickly. It doesn't seem like it now...but when you blink a couple of times she will be eating baby food, sleeping all night and burping herself. Just hang in there - it will get better.

If I can help you in any way or just listen please know that I'm here. I'm a Mother of two, Grandmother of three but a first timer at having a Cleft Angel with reflux. So we're all here to help each other through this journey.

[staceypowers76]

Congratulations on the birth of your baby!

My son was born in August and we too were unaware of his cleft palate until birth. He has a small hole in the soft palate. I completely understand your frustration. The hardest things for us were feeding and sleeping. Seeing a feeding specialist was the best thing for us. She taught us how to use the Haberman and feeding position. We feed our son in a sitting up position, the way we sit when we eat so that the food goes down (not up). He too burps a lot. He will sometimes burp on his own but I try to stop every oz. or two to get a couple burps out of him.

As for sleeping, we were told by our plastic surgeon to sleep him on his belly. Of course I was nervous to do this because babies are now supposed to sleep on their backs. He explained to us the importance of gravity. I did a lot of reading and slept my son on his belly. What a difference. He hardly slept at all until this because he was so uncomfortable. He is almost 10 weeks old and already sleeps through the night.

Feeding is still somewhat of an issue, it takes a while and he's on medication for his reflux. His pediatrician put him on a high calorie diet. It has been good because he can get the same calories with less formula, he's been able to put on weight and it fills him up. He's doing better. It takes time and patience but you will find what works for you and your baby. I don't know if I've made you feel any better but I hope so. It's always a work in progress.

[samjune79]

My son also had reflux he was put on Prevacid and it worked great after 2 weeks on it. Until then, I used Mylanta Supreeme for his gas. This seemed to also help with his burping. It seemed to lessen the need for so many burps. As far as the bottle feeding. I used a Mead Johnson Squeeze bottle and I was able to cut the nipple enough for rice in his bottle. The nipples last a bout 2-3 weeks but are cheap (free in my state as well as the bottles). Also, and I know this is not what the doctors recommends but I had my son sleeping on his stomach and let me tell you it was the first time he slept more than 2 hours at a time. I did this when he was 6 weeks old and he still sleeps like that now at 9 months old. Every baby is different and I wouldn't recommend this if his reflux is also projectile spit up. My son's reflux was the acid reflux. This is really a hard time and it seems like it is forever. I know once the palate was repaired on my son at 6 months the reflux went away.

[Linda S S]

The real reason behind the "Back to Sleep" campaign is because of the flame retardant in the crib mattresses. The reason the campaign appears to be effective is because it gets the child's nose and mouth farther from the antimony fumes which out-gas from the mattress. Here's a website which explains how to cover the mattress. http://www.criblife2000.com/
FWIW antimony is also used as flame retardant in strollers, car seats, playpens, etc.

[mrobida]

Thanks to all of you for your suggestions. It is nice to be able to talk to others going through the same things. This has definitely been a challenging road but when Anne Marie smiles, that is the best payback!

Anyways, we made a trip to the doctor the week before last to make sure she didn't have an ear infection because the sleeping was getting so poor. She had me switch to oatmeal instead of the rice which seems to have helped her belly a little. We also had another visit to the speech pathologist who heads up our cleft team and she said everything seemed pretty ok with the feeding. She wants me to try to get food in her faster to speed up the feeding time, but it seems like she refluxes even more with faster feeds. I am trying to feed her closer to when she wakes up so she has time to digest and get more burps out which seems to help some, but going down at night is still a problem. She also gave me a Pigeon Feeder (anyone use that?) to try, but I've been sticking with the Haberman and am just going to keep replacing the nipple and hope to be reimbursed by insurance. The last thing is that she has green stools, despite switching her to Similac Alimentum at 5 weeks, so we're seeing a GI specialist for that and the reflux in December. Anyone know what that could mean? Also, I asked my pediatrician about trying Prevacid since others seemed to do well on that as well as my other son, but she said that she usually waits until they're six months and that Anne Marie's weight is not enough yet (she's just over 11 lbs.).

As for the sleeping, she's doing a little better at night, but during the day it still takes me several times of putting her down and going back in to burp her before she goes to sleep. I have tried sleeping her on her belly since our son slept so much better that way (he had reflux too, but not nearly as bad), but so far she doesn't seem to like it. I am going to keep trying. For those of you whose kids have pretty bad reflux, have you still been putting them on an incline while they're on their bellies or are they lying flat?

Thanks again for the suggestions!

Michelle

[Linda S S]

Is there a way you can prop her to sleep on her side?

[Z-Pup]

We used the Pigeon nipple and bottle from day one! It has a valve that keeps the air out of the babies belly....the child pushes up on the soft bottom (the notch in the nipple goes to the ROOF of the mouth) and can control the air flow by himself.

We had a little bit of reflux but it was self controled by the time he was 3 months old....he was on Zantac for about 1.5 months.

We too used Otameal in every bottle and Mylicon drops.

I HIGHLY recomend at least trying the Pigeon Nipple!!!

[heather]

I have dealt with reflux with all three of my children. My youngest, born UCL and BCP was the worst. He did however get better when we switched him to the pigeon nipple. It keeps the nipple full so that baby swallows less air. The least amount of air, the better. To reduce the amount that comes up, burp often. Try giving an ounce or less and then burping. If she has that much trouble with needing to burp all the time then she may need to be burped more often. Also something I learned with my first child, who was colicy, is that a peppermint candy in a little bit of water helps to calm their stomach down. It's not an all the time fix, but every once in a while it can be used. Good luck. And it gets better the older they get. Heather

[mellyott]

My daughter was born with a bilateral cleft lip and palate. We could not use the Haberman bottle with her. Our occupational therapist introduced us to the Pigeon bottle. It has worked well with her. They are a little more expensive, but our insurance covered it (after much debate). The website is: www.galtak.com It is the Pigeon nursing bottle designed for cleft palate. I hope this helps you.