I am so confused please help......

Children and adults with cleft lip and/or palate issues

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I am so confused please help......

Postby tiff24nc » Sun Jun 08, 2008 11:42 pm

My Dauaghter had A cleft Palate repair on may 21, 2008 at 10 months old and she went to her check-up the Doctor said everything looked great I had mention when can i put her back on the bottled and he said that i really did not need to do that use the sippy cups....my only problem is she is getting strangled a lot and he suggested for me to not let her suck for a total of six weeks I don't understand.....how early did your child suck after surgery....I have gave her the passey a couple of times to calm her....the doctor's are scared she will get a whole where her stitches are but they are almost desolved.........I thought after two weeks everything would go back to normal........I am so stressed because she is getting to where she will not even take the cup when I offer it to her with out the valve in it...........I just hope I am not doing the wrong thing by letting her have the passey mainly at night to get her to sleep.Please does anyone have any suggestions and answers for me?
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Postby jacksmom » Sun Jun 08, 2008 11:53 pm

The first few weeks post op can be miserable.....just hang in there and know that you are not alone and it will all be behind you soon.
We were not allowed to give Jackson his pacifier until 6 weeks post op, and by then he didn't want it anymore. I know it is frustrating, but I would really try and stick with what the doctor said...I just always thought of it as sparing them from trouble down the road. As far as bottles go, what was she taking before surgery? Maybe you could try the pigeon feeder or the mead johnson bottle, that she doesn't have to actually "suck".
I would call the PS back and let them know how much trouble you are still having, and see if they will give you the okay to try some other things.
Good luck! I promise it will get better soon!
Mom to:
Griffin- 6/22/04
Jackson- 6/29/06 (Bil cleft palate)
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Postby Aidyl » Mon Jun 09, 2008 8:11 am

It is very hard seeing your child go through something like this and you know that sucking can be such a comforting thing for them and so our immediate response and desire is to give them something to suck on. We also were not able to give Quinten his pacifier for quite awhile and we didn't ever put him back on the bottle. He was completely on a sippy cup without a valve by 8 months old. I worked really hard with him to get it where we were both controlling the amount he would get by my allowing only small amounts at a time. I started kind of early with the sippy cup (no valve) he started being introduced to it at the age of 4 to 5 months old. I know it seems ridiculous to start that early introducing it but I honestly believe that it helped him be able to adjust to the faster flow of the milk.
It is hard and right now it seems like an eternity till they can have their pacifier and bottle....but I always tried to keep in mind that I didn't want him going back into surgery...because that just about killed me in itself.... and I knew he would get through this difficult time of not having his pacifier.
Try finding other things for your child to bond with at this time. A special toy or stuffed animal or a book when they are really fussy. For us we rocked many many miles...it really seemed to calm him and he loved being sung to.
Stay strong...this time will pass and before you know it Jackson will be celebrating his 3rd birthday blowing out his candles, and all of this will seem like a dream in some ways.
They are such a blessing.
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