March 5th Surgery - Soft Palate Repair

[michellebeau]

I'm getting nervous about the fast approaching date of Kylie's cleft palate repair. Is there any helpful information or advice that anyone could recommend to help with her recovery?

She is getting tubes in her ears as well that day.
My husband and I are planning to take two weeks off from work after.

Also, I'm reading about arm braces to prevent babies from touching the area after surgery. Is that also true for soft palate repair?

[rainhawk]

my son Devon just had his cleft palate repaired January 10th 2008. he has already had is lip and soft palate repaired. I used the arm restraints only for a few days and didn't use them too much after that. I just watched him to make sure he didn't tug at his sutures. He also had nose tubes for 4 1/2 weeks. that was the tough part. As for his second surgery, (hard roof of the mouth palate, his surgeon was very adamant about the arm restraints. Even after the 2 weeks they still want him to wear the restraints for another 4-5 weeks. I basically put them on in the car, for naps, and when I cant watch what he is doing. please email me if you need more help
rainhawk24@hotmail.com

[mrobida]

We just had our palate repair last week. My daughter is only wearing the no-nos to sleep. We have family helping us out, so someone is always with her when she is awake so that she doesn't put anything in her mouth. She is not sleeping well, unless she sleeps with me in our recliner, because she hates the no-nos so much. I can't wait to get rid of them! As for recovery, I would say just keep up with the Tylenol in the beginning and be patient with your little one. He/she will eventually come around with eating and feeling better. We are only 1 week post-op, and Anne is eating well from the syringe and happy and playing. If we could only get some sleep! Good luck. We'll say a prayer for your family.

[michellebeau]

Thanks for your replies and well wishes. I wish everyone the best for your babies too! Your information is so very helpful!I think I'm going to worry so much about her eating afterward. Kylie's already soooo tiny. I dread thinking she's going to lose weight.

Could you tell exactly what a no-no is?

BTW, I just loooove this site. I have found out most everything I know about Cleft palate repair here. (not the pediatrician) Thank god this site exists! I don't know what our family would do without it.


Michelle Beaudoin

[Linda S S]

"No-nos" is the informal term for the arm restraints/splints.

[twinmom04]

Hi. I hope all went well with your little one's surgery. I have twin girls who were both born with soft cleft palates. They had their repairs 9 months. The first few days they wouldn't eat or take a bottle, and they, too, have always been so tiny. But after we were discharged from the hospital their appetites really picked up. They weren't bothered by the arm restraints much at all and they wore them for about 3 weeks. They are three now and are doing great. My best advise is to hang in there and give lots of extra hugs.
Take care and best wishes!
Alex

[michellebeau]

Whew! What a relief to have the surgery over with. The worst is over.
Thanks for your words of encouragement & helpful information. Also, thanks to everyone for sharing your stories. Educating ourselves about the condition, procedures and recovery have helped to ease our fears tremendously!

Just a brief recap of Kylie's soft palate repair surgery experience yesterday, 3/5:

Dr. Shipley (ENT in LV) placed the tubes in her ears first. It was so fast, it was incredible. He said it was so good we did the tubes because Kylie had a ton of fluid & mucus build up in her ears & it most definintely affected her hearing.

Dr. Swanson (Oral Surgeon of LV) repaired her soft palate. His portion took approximately two hours. He is Awesome!

Kylie's oxygen level was very low and she refused to drink anything so they decided it was best to keep her overnight. I cannot say enough kind words about the whole experience at St. Rose Sienna hospital. The doctors, nurses and facility were amazing. Her level stabilized over night so we were discharged this morning. Ordinarily, she would have been able to go home after a couple of hours in recovery. She's a true princess!

Her sleeping has been way off. Short naps. We've been giving her tylenol for the pain. She's on penicillin & antibiotic ear drops too.

This afternoon, she seemed to really be coming around! She has been smiling and even took three ounces of formula at one time.

Again, my husband and I love this site. It's just incredible!
Michelle Beaudoin

[scaredmother]

So glad to hear all went well!