Beautiful Baby

Melissa Papaj recently emailed me and was willing to share the newborn session that she did for her cousin. Isn't this little one darling?! I think it is so special to capture these little ones the way they came to us before surgery, and I'm hoping my son gains a sense of how much we have always treasured him from the newborn pictures we did. My grandparents only had maybe two photos of my aunt before her cleft repair, and it would have been so special for her grandbaby and my son to see more pictures. But they lived in a different time and different circumstances...

If you'd like to see more of this lovely session, take a look at Melissa's blog here:  http://melissapapajphotography.blogspot.com/2011/04/baby-devens-newborn-session-utah.html.

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!"
 

Tiny Wide Smiles - Doll Cleft Clinic

I love our entrepreneurial parents! Our very own Kate recently started Tiny Wide Smiles, a cleft clinic for dolls! They modify dolls to have a cleft scar to match your child's scar. I think these could be great to help prepare siblings for the arrival of a baby with a cleft. Here is her link on Facebook: http://www.facebook.com/TinyWideSmiles. I love this idea! If we have another baby with a cleft (and there's a good chance we will), I'm definitely getting one!