Help! We have tried everything and can't get our baby to eat!

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!" 

How can I help my baby adapt to solids?

It seems pretty common for babies with clefts to be somewhat averse to solid foods. Here are some suggestions from parents:

"[My son] had a really hard time with solids for a while. Does your little one have a palate prosthesis yet? That made things a bit easier for [him], even though he still gagged and choked a bit. When his soft palate was repaired all that stopped and he could eat just fine. But if he's not ready, there's no reason to push it. There's no schedule that says your baby has to be on solids by a certain age. And with a bottle like the pigeon, where he'll have to work his mouth and tongue muscles differently to drink, you may see improvement in his eating ability.
Good luck!"

"With feeding my one twin... loved baby food the other... hated baby food but loved what we were eating. We would mash or food process it up or very tiny pieces lot and lots of sweet potatoes and baked potatoes. And now she eats better than her sister.  I know there are certain things you have to buy in baby food form because it is safer I can't remember what they are. We would mix them in with their lunch bottles I would make a sluah and had cut the nipple bigger and no vent (white thing) that helped [my baby that didn't like food] a lot but now like I said she eats way better than her sister especially when she feeds it to herself."

"We didn't give [our baby] cereal until after he had been eating fruits and veggies for a while. Maybe try doing it this way. This way he'll get used to eating mushy food like fruit, and since it tastes really good it may be more enticing. The cereal just seemed to give him really bad gas."

"my daughter (no cleft) refused to eat any and all baby foods. She wouldn't even eat applesauce. We kept trying cereals, fruit and veggie puree and nothing. Then one weekend, when she was about 7 months old, she got a taste of mashed potatoes and also some macaroni and cheese, and she was an immediate fan. By the end of the next week she was eating chicken and anything else we could give her that wasn't super hard (she had NO teeth at the time!). She loved food, but hated baby food! After that she would eat regular oatmeal, cream of wheat, yogurt, pasta, cubed and cooked carrots, bread, and anything else that wasn't really crunchy. Your boy may just not like the texture of baby food."

"With solids, my boys didn't do well with any of the fruit ones or things with vitamin c/absorbic acid.  I think it stung their nasal passage.  We stuck with veggies or mashed up fruit without anything added to it.  It took lots of practice, but they eventually were able to down everything.  I did find though that once they sneezed, that was the signal feeding time was over (or else it would turn into a struggle).

"Another thing that helped with feeding time, is if I grabbed an extra spoon and let my son play with it while I held the other spoon and fed him.  I don't know if it distracted him or what, but it seemed to make things easier."

 

Is it normal for my baby to burp SO much?

Here are some answers from the group:

"We had to spend SO much time burping our boys.  I literally became a master burper.  After so many hours, I gained a sixth sense now of sensing when my child has a burp Haha!  Even to this day, I can sense when my baby daughter (who doesn't have a cleft) has a burp in her.

"Hang in there.  They are so much happier when you get that burp out (and way less spit up!).  Just know I've been there, and it's normal."

"[Your baby] could have reflux, which is common in babies with clefts... I don't think his burping problem hours after he eats is related to his cleft and I would look into acid reflux which can be treated with medication. Babies typically out grow it but until they do it is miserable for them."

"I am a big fan of the pigen nipple with the playtex vent-air bottles (just make sure you don't get the wide nipple ones!). They have worked great for my son. He still only takes 6 oz bottles most of the time, any more than that and he gets too full and just spits up. Anyway, the playtex bottles really seemed to help with the gas.

"Another suggestion, if you are using formula, stir your bottles, don't shake them to mix. They get a lot less air in that way!"
 

Suction, Straws, and Sippy Cups

Transitioning from the bottle to something else can be extra challenging for kids with clefts, since they often have very little or no suction until their palates are closed. Here are some ideas from parents:

"The only sippy cup that [my child] could ever figure out was the Nuby cups with the soft top. Eventually he learned to suck from a straw so he could use the sports type cups with the straw in them. He is 5 years old now, still has the alveolar cleft with small fistula, and still can't suck out of most sippy cups."

"My boys weren't ever able to drink out of the hard plastic sippy cups unless I took out the valve (which unfortunately made them leak if tipped). They did figure out a soft topped one (material similar to the haberman nipple)....we did cut the sippy cup holes a bit bigger too (since the spout was soft plastic), and that seemed to help- especially at the beginning. My boys also could use the hard spouted NUBY cups they sell at Walmart, but we had to of course take out the valve. And then that made for lots of messes in the car and in diaper bags and on carpet, but oh well! ... But eventually both wanted to drink out of a cup without a top. They both did learn how to sip out of a straw though around 2-3 years old, and that was a surprise!"

"[My child] used the soft sippy cups. I think they are a dollar at walmart. I am not sure on the price now. I had [him] off the bottle and he lost weight because he would get too tired drinking from a sippy cup. I would try a few different ones. Look at the grocery store too, they sometimes have one that will work. I wouldnt stress too much about being off the bottle at one. I did and then he had to go back on it anyways. Good luck. Every kid is different and they all have there own time schedule."

"I'm sure every child is different but my son had a very wide cleft and was never able to use a sippy cup with the no-spill valve in it, even after the cleft was repaired. He used a regular baby bottle nipple with a slightly bigger slit cut into it to learn to suck. We also had good luck with the disposable sippy cups because you only have to suck lightly to get liquid to come out of it. Its a harder plastic than the nuby so biting won't help (which is good). For the straw, start by lifting the straw out of the glass holding the liquid in by keeping your finger at the top and as he sucks, slowly let some of the liquid out of it. Then he will learn that he has to suck to get it out. Cutting the straw and putting it in a shorter glass makes it much easier too because less suction is required to get the drink to the top. Good luck."

"To help with learning how to sip out of a straw, our OT taught us this cool training trick: you can take a mead johnson, take a nipple and turn it so it is upside down (dipping into the bottle rather than protruding out the normal way from the top), then insert a small straw into the nipple hole (you may need to cut the hole larger), but you do want the nipple snug around the straw. Then let your child practice putting their mouth around the straw (this takes some practice to be able to pierce those lips), and gently squeeze the bottle, so a bit of juice/water comes out through the straw. This will just get them familiar with how a straw feels/works. They don't necessarily suck at first, but will learn how. Another good way to get them to start learning how to use a straw, is get a milkshake in a flavor the child likes. Suck up a bit of it through the straw, then plug the top of the straw with your finger, so the straw remains full. Then take the straw out of the milkshake and put the unplugged end into your child's open mouth, and then unplug the other end by releasing your finger. It makes all the milkshake that was in the straw fall out and into your baby's mouth. This also gets them familiar with a straw and how it works. We practiced these a bit with my boys, and with Jimmy, one day, we were in a restaurant and he grabbed my drink (which had a straw in it- I thought surely he wouldn't be able to get anything out), and he started sipping!!! It was amazing! I didn't even realize that he would be able to do it on his own yet, but he could!"

"My little guy's occupational therapist suggested getting an empty honey bear and fitting a straw in the hole, that way you can squeeze liquid up into the straw. This is similar to the suggestion using the Mead Johnson bottle, but a lot cheaper! (They are 69 cents at Macey's here in Provo). The bendy straws work perfectly because the part that bends is just big enough to plug the hole and make it airtight, though I think if you could find clear straws it would be even better so you can see how hard to squeeze."

Where Can I Buy Pigeon Nipples Locally?

Good news! There are now three places where you can buy Pigeon Nipples in Utah:

PCMC Outpatient Pharmacy
Riverton Hospital Pharmacy
Dixie Regional Pharmacy in St. George

Will I be able to breastfeed after surgery?

The answer to this isn't particularly clear. Some babies with clefts are able to breastfeed from the beginning, particularly if the cleft only affects the lip. And a few babies are able to gain suction after a full or partial repair, but often the combination of little to no suction due to the cleft and having chewed a bottle to get milk rather than suck makes it difficult for babies to transition to breastfeeding. Here are a few comments from parents that were posted to the group:

"I also had high hopes for breastfeeding after the first surgery. However, [my baby] was just so used to basically a chewing like motion with his feedings that he was unable to suck at all. Dr. Warnock explained that some babies are able to breastfeed if your letdown is powerful, but you would likely still need to pump in order to get the hind-milk since suction is needed for that. I felt that it was just too frustrating for him and me that it interfered with the process. Every situation is different so I encourage you to give it a try."

"I think that if you want to give it a try, then you totally should!  I would contact a Le Leche League person, to help you have the best chance possible.  However, I do know that after my son had the hard and soft palate fixed (about 1yr old) he was still not able to even use a normal sippy cup.  It is not just the fact that the holes are all gone... it's also an issue of these kids not using the muscles in the soft palate... so it takes a while for them to learn to use them and to have the normal sucking strength.  So, it may take you longer, but if it is something you really want to do, then  you should go for it!"

"I think that if your baby's cleft is small enough and the prosthesis seals off the cleft, you might be able breastfeed. Medela makes a Supplemental Nursing System that you could try. It enables babies to feed at the breast before they know how to suck by giving them either expressed milk or formula through a device that is hooked up to you. It might be a good way to try to see if your baby can suck without starving him or losing your milk supply. I read an article once about a woman whose baby's palate was completely repaired at 6 or 7 months and she used this until her baby mastered sucking."
 

Milk Money

I was reading some random site online like I like to do, and saw several people mention that they spend about $120 a month on baby formula. So I proudly announced to my husband that by pumping I was saving us $120 a month. Being the numbers man that he is, he of course had to spoil it by figuring out how much per hour I was "making" by pumping. Six times a day, times about half an hour each time for the whole ordeal, times 30 days a month... Turns out I am "making" $1.33 per hour. Awesome.

Special Bottles

There are a variety of bottles/nipples that are made specifically to help babies with clefts to eat. There is a quick description of the available bottles with pictures at the Cleft Advocate site, though there are several that you probably won't be able to find locally.

At Primary's LeAnn generally recommends trying the Pigeon nipple attached to the Mead Johnson squeeze bottle or a Playtex VentAir bottle with drop-in liners. I'll add more tips about this configuration, and possibly some pictures, as I collect them. Some speech therapists recommend this nipple because it allows the baby to do all the work and control the flow of the milk. The Pigeon nipple runs between $4 and $6 each.

The Mead Johnson squeeze bottle also comes with an elongated nipple with an x-cut opening, and some parents find that this nipple works well when their baby isn't getting enough milk with the Pigeon nipple, since there is no valve and the caregiver can squeeze the bottle to increase the flow. This is also one of the cheapest configurations, since a box of 6 Mead Johnson bottles complete with nipples runs between $16-$18 (and you can often get them for free from the hospital during your stay there).

Others use the Mead Johnson bottle with Similac or Nuk orthodontic nipples (the kinds they use with premies that have low suction).

The Haberman is another type of bottle that allows the caregiver to squeeze milk into the baby's mouth. The main drawback for this bottle is that they are expensive; upwards of $30 for each bottle. If you find that this bottle works best for your baby, you may try asking your pediatrician or surgeon if they have any that they can give you, as some parents have received a few this way.

There are video tutorials on feeding your baby at CleftLine, here (thanks Jennifer!). There are specific tutorials showing how to use the Enfamil (Mead Johnson), Haberman, and Pigeon bottles, which are fabulous.

This post (and pretty much all posts on this blog) will be under construction as I collect more information and input from parents!