still don't get the "use a sippy cup" requirement

Children and adults with cleft lip and/or palate issues

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still don't get the "use a sippy cup" requirement

Postby mia's mom » Thu Mar 13, 2008 9:28 pm

hey there- our PS said that Mia should be on a cup by her surgery - not a sippy cup, a real, regular cup. She is using the Nuby just fine for water but still uses the mead johnson for milk. our pediatrician said the Nuby was not good and to use something else. I read posts here and it seems like some of you were able to give your kids their bottles again after the surgery and some used the Nuby. So I'm not sure why I can't do this for Mia- she has a complete cleft of her hard and soft palate. It was pretty extensive. Its closed alot on its own but its still wide. maybe this? thanks.
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Postby mrobida » Fri Mar 14, 2008 4:22 pm

I am sure that some of the decision is based on the type of repair but some is just surgeon preference. Some surgeons don't want any chance of disrupting the repair. Our surgeon only allowed a "real" cup, no sippy cups either. I was real nervous at first, but they also allowed her to be fed by syringe, which is the route that we eventually chose. It took her a couple of days to catch on to the new routine. We stayed two nights in the hospital, in fact we almost stayed three just because she wouldn't eat. But she finally got the drill and started eating no problem. By the way, she had a soft and part of the hard palate cleft. Anyways, we did the syringe for 2 full weeks, at which time they let her go back to her bottle, the Haberman. We stuck with that for another week and after that she was able to learn to suck from a regular nipple so she is now using an Avent with no problem. We haven't tried any sippies yet.
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Postby mia's mom » Mon Mar 24, 2008 3:53 pm

Thanks so much. The info was really helpful. This whole cup business is stressing me out much more than the surgery. I've spent hours looking at cups at various stores only to go home with nothing! I think I'm going to call the hospital where the surgery is going to take place and where our cleft palate team is and talk to them about the syringe. Maybe I can get a look at one or get one and practice a bit with it. Thanks again. Sandy
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UPDATE

Postby mia's mom » Thu Mar 27, 2008 7:23 pm

I called the cleft palate clinic to talk about my concerns with the sippy cup. This guy called me back who is the new director of the speech language pathology department. He said that his son had his cleft palate repaired last year and that they used a sippy cup to feed him afterwards but they cut most of the spout off of it. He is taking a picture of the sippy cup and sending it to me. If anyone needs to see it as well, please PM me and I'll see if I can scan in his picture. We haven't gotten the picture yet so we haven't started practicing with mia but I'm so excited to see if it works for her. The sippy cup has caused me so much stress! thanks, sandy
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Postby rainhawk » Fri Apr 04, 2008 2:08 am

my team also told me that I needed devon on a sippy cup as well. but when the surgery arrived, the surgeon liked the softness of the preemie nipple devon has been using on the bottle (Occupational therapy in the nicu found that the preemie worked best for his feeding, so he has used it since - I have altered the hole for better flowage).
Luckily, his cleft has healed fine despite being on the bottle after palate surgery- although he did have a fistula that thank goodness closed on its own- It was about a 1/4 of an inch big. Devon also forgot how to use a sippy cup, and had to relearn how to use it.
This probably doesn't help you but hopefully all will go well.
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Postby heather » Thu Apr 17, 2008 10:28 am

It's pretty much a difference in the surgeons. Eyson's surgeon didn't care if he was still on the bottle or not. He used the Pigeon bottle so there was no actually sucking involved. Everything was done with a flick of his tongue or him actually biting the nipple. He was born unilateral cleft lip and complete bilateral cleft palate. He never sucked on his bottle. He only bit the nipple. He still does the same with his sippy cup. What most surgeons are worried about is sucking on something when the repair is fresh and possibly popping stitches or ruining the repair. The Nuby sippy cup is actually what Eyson's PS suggested. He took to it immediately, even though he still can't suck on it. He's 17 months old and still bites the nipple. I'm not a doctor but I would say find what works best for your baby. Doctor's can only tell you what they think will work best. But not every baby is the same. I was told that Eyson would never take a pacifier because he couldn't suck on it and to not even try to give him one. He loved his pacifier. So they're not always right. Get a couple more opinions and take the advice of some of us mothers that have been there and done that.
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Eyson Brentley Van Eycke
Born 11/8/06 UCL BCP
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