cleft palate repair in Minneapolis

[lislas]

Hi everybody, I am a frequent visitor here and love to read all the comments as I have a daughter (Hailey) who was born in Feb with a Unilateral cleft lip and palate. (It was a surprise) She had her lip repaired in April and did great but had a little reaction to the sutures so her scar is a little raised and more noticeable then they expected but they said it can always be revised later. Then ear tubes in July and now her palate surgery is tomorrow!! I didn't realize how anxious I would be! I thought it would get a little easier each time but not so! She's been off her bottle for a couple of weeks and is doing well with the sippy cup. We see Dr. Sidman at Minneapolis Children's and have been very happy so far..anyone else? I just wanted to know if there was anything I need to prepare myself for and how everyone did with the arm restraints (again)! I am so thankful for this web site as it has helped us with so many questions and given us so much support. I'll try and post some pictures soon. She is such a wonderful joy and blessing to our family and I would love to share her smile with you all.

[Heide]

Best wishes for tomorrow. Our daughter does not have her palate surgery until next month so I can be of no assistance in that regard. How wonderful though that you have her drinking from a sippy cup, I am sure that will help. Hope her recovery is swift and your holidays are happy. Heide

[lislas]

Hailey had her palate surgery today and so far is doing very well. She is still very swollen and isn't liking her arm braces, but we are just so thankful she's ok. she's already taking some water and sprite (i guess the bubbles help keep the suture line clean) from a little cup and seems to be keeping it down ok. thank goodness for the tylenol with codeine...it seems to work the best. Im sure the night will be a long one, but aren't these little ones so amazing??

[Heide]

thank you for the update and I am glad to hear her surgery and her recovery thus far is going well. I am sure you are not getting much sleep these first few nights so best wishes to you also. I am going to "tuck away" the sprite advice for our daughter's surgery next month. Happy Holidays. Heide

[chicka-monkey]

I am glad she is doing well. I kept Skylar's arm braces off the whole time, except when we went in the car. I just watched her like a hawk the whole time. Night was tough for Skylar (and me!) She had night terrors (happens due to anesthesia & surgery trauma, to some children), but no crying because of pain. Good luck with the healing process.

[lislas]

It seems that we are keeping the arm restraints off too. We have only been putting them on when she sleeps and she seems to do ok. I stopped the Tylenol with codeine and so far she is just on ibuprofen and Tylenol...she is constipated and I'm hoping that without the narcotics that will soon change. We are 3 days post op and I'd say she's about 75% her old self, just seems very tired! (as we all are ) It's fun to watch her little tongue as she seems to constantly be exploring her "new" mouth. I just can't believe how quick these little ones start to heal. I just wish I could take all the pain from her though.

[chicka-monkey]

I'm glad she is doing well. Mine gets constipated since she is now on whole milk. I try to give her juice to soften it up. Mine will now sometimes put her tongue out of her mouth since having the surgery, it is so cute.

If we could all take away the pain of our little ones!!!!

Have a great week and I hope everything gets back to normal soon!

[chicka-monkey]

I am glad she is now eating! It will only get better from here!

[lislas]

This is for Carrie, or anyone else who might know, but I saw you mention night terrors. Hailey used to sleep from 730 until 6am with maybe one wake up every once in a while. Since we have been home she will hardly sleep at all. I know she can't be having much pain, because we give her the same medication she gets during the day and she'll play and eat without problems. At night, she'll fall asleep for about 30m in and then wake screaming. Is this something that you went through? And if so any suggestions? And how long did it go on? Also how long did you feel that it took Skylar to get back to "normal" and back to a regular appetite? Hailey eats pretty well, but all she will drink is juice (watered down). I keep thinking that each day will get a little easier and we are only a week out, but I'd love to hear any words of wisdom from someone who's' been there before!! Thanks so much!

[chicka-monkey]

Those night terrors are the worst!!! I took her the ER and that's how I learned about them. They told me, as children lose weight after surgery, they burn some of their fat they have. Some of that fat contains the anesthesia medicine that was used for the surgery, which gives them night terrors. They said any drug or medicine you took is in your fat, and stays there. That combined with the trauma of the surgery gives them night terrors. Skylar had them about one week. They were awful! She would wake up every half hour, SCREAMING!!! She wasn't in pain. I just had her sleep with me and as soon as she woke up, I would turn tv on (Baby Einstein dvd) and talk to her in a regular voice and walk the floor telling her it's ok, ok. Etc. It seemed to calm her down when I did that. I tried many things! They lasted for about one week. One VERY LONG week. Not much you can do but comfort him, and let him know you are there. Good luck with that, those are horrible! I never even heard about them, until after I took her to the ER.

She got to eating normal, when I didn't have to feed her from the syrnge. She wanted her bottle. Even after the 10 days, when I gave her the bottle, she felt uncomfortable with it. I would probably say it took her about 14 days to finally eat normal. But it got better each day.

[lislas]

Thanks so much for the info. Last night she only woke 4 times so I'm hoping that we are slowly turning the corner. Today she actually seemed just like her self again! Yeah. I posted some pictures of her under the topic "sharing pictures" Thank you so much again, it's so nice to hear that others have been there too! Merry Christmas, Happy Holidays
Lissa

[lislas]

Hailey just had her post op visit yesterday and the surgeon was very happy. I personally had not looked in her mouth yet, but I did yesterday and I swear you could never tell she had a cleft. You can see the suture line and I guess he left a small gap at the gum line (to come together with the bone graft surgery) but it looked great. She has no diet restrictions anymore either! I asked if it was okay to give her a sippy cup in which she has to suck on (instead of always removing the spill guard)and he said that it will be great practice for her. So maybe we will try that soon. She really recovered pretty well. The first week was a little rough, but then it was smooth sailing. We only gave her the Tylenol with codeine 2 days at home and then switched to Tylenol or ibuprofen for a couple more days, then no pain meds. They are amazing little kids!! We won't see our surgeon again until March....then we have a full day meeting with the entire cleft team. If all goes well we should be surgery free for a couple years, but only time will tell.

Lissa
http://www.haileylyn.shutterfly.com