Pre-surgery questions???

Sarah - posted on 01/19/2011 ( 3 moms have responded )

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My daughter is 5 months old. We did not discover her cleft palate until the day she was born. We met with the Cranio-Facial team at our children's hospital, and they had her do a sleep study, and a few genetic tests. A few weeks later we learned that she also had multiple heart issues that required open heart surgery - which she had November 2. We heave been dealing with her recovery ever since, and the fact that she still needs an ng tube because she tires so easily.



We will be meeting with the plastic surgeon that will repair her cleft palate on February 21. I want to be as prepared as possible - so, are there any questions or concerns that those of you who have been through this would suggest? I appreciate any help as I prepare for the next part of our roller coaster ride.



Thanks,

~Sarah

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Karen - posted on 01/23/2011

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I feel awful that your feeding is not going so well. What kind of bottle are you using? Our cleft palate team gave us a haberman bottle from medela and it's been super easy to use. My little guy is 8 mths old today!! We go back to the clinic in march to retalk to the plasic surgeon and hopefully (fingers crossed) get a surgery date. I wish that dates and ideas about things would be consistant from place to place. It would make things a little less frustrating.

Good Luck with the speach pathologist!! Hope everything works out.

Sarah - posted on 01/22/2011

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Thanks, Karen! It turns out that the appointment with the plastic surgeon isn't until February 21, so we have a little more time to prepare. We are followed by speech because of her feeding issues, and the Cranial-Facial team said that they want her ng tube gone before the surgery, and of course the cup feeding and spoon feeding will need to be well underway by then. We have an appointment with the CF team next friday to get a plan together to get rid of the tube.

How old is your son now? Our doctors have been pretty concrete about wanting the repair to be around 9 months - they say that they want her recovered before she starts making consonant sounds. It is interesting that procedures differ from place to place.

Thanks so much!
~Sarah

Karen - posted on 01/21/2011

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I sorry to hear about your daughter. I live in Canada, and we will be getting my little one's cleft palate when he's about a year. I have talked to the plastic surgeon already and he's told me what to expect. It's a little hard to explain without the drawings though :D.
Anyways, My surgeon said that because there is no 'stretch' in the palate to bring it together, they cut on both sides of the palate and pack them. He said the sides of the palate heal better then the top. Then he will sew all the different layers of the palate up. He wants us to get baby on a regular cup so that we don't accidently tear the stitches (I have no idea how to do that one!!!!). Anyways, I'm sure it will be OK. I see you see your surgeon today so I hope everything went well. Let me know!

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