New and in need of Support

Children and adults with cleft lip and/or palate issues

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New and in need of Support

Postby racheleok » Sat Aug 04, 2007 9:17 pm

Hello,
My son Aiden was born on 5/2/07. He was born with a unilateral cleft lip and submucosal left palate. His first surgery for his lip is on 9/5/07.
His doctor said he will look at his submucosal cleft palate while he is under anesthesia to determine if he will need it repaired or not. i am nervous as his surgery approaches because i don't know what to expect afterwords. I would appreciate any advice i could get. Has anyone ever heard of a submucosal cleft palate not being repaired. Also when do they repair a baby's gum line if the cleft goes through that.

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Postby tigerlilly149 » Tue Aug 07, 2007 10:23 am

Hello. Congrats on your baby boy!

My son, Ethan, was born on 4/23 and was born with a incomplete unliateral cleft lip. Pallate was in tact. We go into surgery Wednesday, so i'll be able to give you my experience from just the lip part.

I understand your feelings completely. I've been a mess about a month before his surgery. As it comes closer, I get more and more anxious and worried. However, I know its for the best.

I wish you the best of luck during your son's surgery!
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Ethan Alexander
April 23, 2007
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Postby heather » Tue Aug 07, 2007 12:13 pm

Hello and welcome. He's a cutie. My son Eyson was born unilateral lip and bilateral palate. After his lip surgery there wasn't really any problems at all. You will be given pain medicine obviously. They won't send him home unless he can eat. I think Eyson's surgery lasted nearly four hours but we were given updates quite frequently. I'm sure you will be given arm restraints to use for about two weeks. They weren't that bad. He tolerated them quite well. But every baby is different. Good luck. Heather
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Eyson Brentley Van Eycke
Born 11/8/06 UCL BCP
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Thank you for responding

Postby racheleok » Tue Aug 07, 2007 2:20 pm

Thanks for responding. It is good to hear from other parents in my situation. Do you have to feed the baby in any special way after surgery? what do you put on the scar so it heals well?
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Postby heather » Thu Aug 09, 2007 1:25 pm

I didn't have to feed Eyson in any special way. He took his bottle immediately after surgery and never looked back. He eats off of a spoon and eats baby food just like any other baby his age should. His scar had quite a bit of pull in it after his surgery. His surgeon gave me some silicone patches to place on it. It helped soften it up. I was also supposed to massage it downward to help it relax as well. But really in the end it was just a waiting game. Just as his surgeon said his lip relaxed and the scar softened on its own and looks completely normal. You can't even tell that he has a cleft. Good luck with everything. It will be just fine. Heather

Eyson before surgery:
http://i142.photobucket.com/albums/r117 ... months.jpg

Eyson after surgery:
http://i142.photobucket.com/albums/r117 ... tiepie.jpg
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Eyson Brentley Van Eycke
Born 11/8/06 UCL BCP
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Postby tigerlilly149 » Fri Aug 10, 2007 11:39 am

Ethan's surgery story is posted above if you want to read. Thanks for the email.
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Ethan Alexander
April 23, 2007
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Postby sodapop » Sun Aug 12, 2007 4:11 am

Hi, my name is Maria and my daughter Vada was born 8-13-06, she is actually going in for palate surgery on Tuesday the 14th! Time flies! She was born with a complete unilateral cleft lip and palate. She went through her lip/nose surgery at 5 months. (If you would like to see pics, email me at marialouise79@yahoo.com) Her surgery lasted about 4 hours. Felt faster though. She had a hard time with the morphine they gave her for pain control right out of surgery, but they wont give oral meds till they are eating enough. Remember that you know your baby best and if you feel he is in pain be sure to give him the pain medicine (once it is up to you how often he gets it), there is no sense in him feeling pain... However I guess there is another pain med (IV) that they can give right out of surgery and I would recommend asking for the alternative to morphine. It seems quite a few children get night terrors from it. She would wake up crying every 10 minutes and then fall right back to sleep. It was hard to hear and hard to sleep through. Remember that you need to be rested in order to take care of your baby. As far as arm restraints...we took them off the second we got home, she wasnt putting things in her mouth really at that point and she touched her lip maybe twice, realized it hurt and left it alone. Of course not all babies would leave it alone which is why they reccomend them. And when she did have them on she was fine with them, we really took them off for us, we felt so guilty tying her up like that i guess. Feeding...Generally they will give you a syringe to take home if your baby doesnt take to the bottle right away. The syringe is a pain but it gets the fluids in. It just takes a while to feed! As far as something for the scar, we never used anything. Just be sure to massage his lip several times a day after it heals. It keeps it from becoming very ropy and hard. Vada will be a year on monday and you can still see the pink scar but both sides of her lip look symetrical now, which is amazing considering when she was born she pretty much had no lip at all on the left side! Know that for us anyway, all chaos only really lasted maybe 5 days total! And also know that so many of us on this forum have been through the same things so if you need to vent or need advice we are here!:) email me off forum if you would like (marialouise79@yahoo.com) Like I said you know your baby best! Take all advice with a grain of salt(even doctors) and come up with a plan that makes you and Aiden feel the best about all of his treatments! Doctors are wonderful and they are there to guide you but no one can care for Aiden like you can! Good luck to you and your family and baby Aiden!
Maria
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