You'll find hundreds of files on cleft lip, cleft palate here on widesmiles.org.

This one is about: Paul's Palate Repair: Before & After


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Paul's Palate Repair Story:

Told by Beth in a series of posts to Cleft-Talk (CT)

The following are unedited, and follow Beth's thoughts through posts sent to Cleft-Talk, the friendly email discussion group.

They show the thoughts a parent goes through preparing for the surgery and after. For those of you that like to read the last page first... Paul recovered relatively quickly and easily!

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BEFORE ...

Hi Ellen, I did get your note! Thanks!! I have been trying to do it all and not been very successful! Surgery is sooo close, less than 4 days away and the stress level is on the rise. Thanks for thinking of us. My nerves are ok, but could be better. I have all kinds of plans for feeding, probably syringe first, but will have ross nipples, bottles and sippy cups just in case! Already have arm restraints from last time that were too big then.

I know this is for the best, but it is still HARD! You know that. I can't wait for him to be all better (sort of). I just am ready to have it done and over with.

Thanks for caring...Beth

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Thanks Ellen, Hey it is so neat that you found the other Ellen! That is so cool! I have made some great connections on CT. The chats are great, I have really gotten to know Kat, Kristi, Marti, Debbie, Pat and Chris, we are the chat crew, although I am not as "regular" as some of them. It helped last night, I chatted for a couple hours and it helped relieve some stress and gave me some support I needed.

We are getting more and more tense, hubby and I are fighting a little more, we usually don't at all, but surgery time makes us both edgy! Just that is normal for us anyway.

I keep thinking about feeding him after surgery, they usually provide a syringe and I bring a bottle and ross nipple, both of which I am pretty good at and also a sippy cup just in case. I want to be cautious and not cause any fistulas if possible. I am going to try to only take off about 5 working days, but will stay home more if needed. I have to use vacation and only get 2 weeks, so I am trying not to use it all so that we can have a nice vacation later in the year, but Paul's health is more important than vacation and if he needs me I will stay home.

We have a wonderful sitter, but I do not want to take any chances! If he is better by next Tuesday I will go back to work...probably worry about him all day, though! His surgery is Tuesday and that is less than 3 days away! YIKES!!!!

I know he must go through this. Thanks for being there and giving me advice.

Was Sarah eating baby food at palate repair? Did you feed her any after surgery in that 2 weeks? I have heard we can use the syringe to feed baby food if it is thin enough, but no spoons, right? I really should have had a pre-op with our doctor. He kind of sprung the surgery on us a month beforehand and then said that we didn't need a pre-op that this was it, but I wasn't prepared and didn't have all my questions ready. I could have made an appointment and talked to him, but I never did, maybe I will call on Monday and just get a few more answers. I could kick myself! I think sometimes because I usually have my act together and know so much from CT, that he thinks I don't need to ask him things. Sometimes he asks me!!! But in this case, I feel like a pro about lip repairs, but a dummie about palate repairs.

Oh well, I am rambling now, I actually just told Rob that maybe I should call the PS right now!!!  Emotional or what????

Thanks for listening! Hugs, Beth

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We are still hanging in here...Just less than 2 days til surgery and a little frazzled and testy, but otherwise not too bad. I have been reading old e-mails and searching the website for info on palate surgery and making sure we are prepared. There is so much good info that Andrea has put on the website and I save posts from people and put it in files to read when I need to. I had 30 posts on palate repair that I have been putting in a file for the last few months and then I just finished reading them, it really helps. I am thinking about what to take to the hospital, since this is our 3rd surgery then it is not as bad as the first, we have been through the drill before so have an idea what to expect.

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Hi all, Well Paul's surgery is only about 40 hours away, and we are preparing ourselves for it. Since this is the 3rd one in 9 months, we know what to expect, but also still dread it. I have been searching the web site looking for all files on palate repair!  Andrea what a tremendous job!!!  Did you know you can search for a word, ie dehydration and it will pull up posts that have that word in it??? VERYHELPFUL!!!!!

I now know the signs of dehydration! I think we are ready, we know what to pack, will have MJ bottles, ross nipples, sippy cups, etc. all just in case. Comfy clothes, Paul's favorite toys, our standard pass the time Nintendo Game-Boys that are linked together so we can battle out our frustrations, pictures of Paul to remind us this will pass and to see his happy smiling face, portable CD player with headphones so who ever is not taking care of Paul can relax to music, burp rags, etc.

I bought some fresh cut flowers for the house so they will be opened up when we return from the hospital. We have food and plenty of treats for ourselves...

Thanks to all of you who have been there for me. CT has been a part of my life for almost a year now. Joanne and the gang have helped us through 3 surgeries in a very short time. I really do not know what I would do without CT. This is an amazing group and the web site is an incredible tool!

I guess my emotions are running high, but I really am thankful we have each other to get through these hard times of surgery. Please say a few prayers for my little guy as he goes through those big double doors for surgery on Tuesday morning.

Thanks and Hugs,  Beth

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AFTER

Hi all, Well it has been a VERY long day and a half, but we are home and Paul is doing extremely well.  We are all very tired, which is to be expected, but are hoping we can all get some sleep now that we are out of the hospital.

Paul was in surgery at 7:45, tubes put in first and then the repair of the palate and the release of the tongue. The PS was very happy with the amount of tissue and said that it was pushed down on the sides and "ugly," but now he has a real palate.  They did end up involving the muscles and were able to get a great closure. Paul faired well, and was up to his room by 11:00am. He had the tongue stitch and was pretty bloody and swollen, but wasn't too bad. They wanted him on glucose water only for the first 24 hours, but by about 10 pm, I told them he needed something more, so they diluted grape juice with Pedialyte and that worked pretty well.

He only slept a few hours after surgery off and on and then from 3 pm on would not sleep until 12:30 pm. To top it all off, he would only be held by me. If I even tried to go to the bathroom, he would scream until I got back. Rob felt rejected and wanted to help, but Paul would have nothing to do with that. Mommy only for the first 20 hours following surgery. The only way he would sleep was with me holding him, except for one hour that he actually slept in the crib. Needless to say, I am exhausted and my back is killing me.

He slept pretty well, on me from 1 am til 5 am and then was wide awake and wanted to play, so at 5 am I took him to the play room and wore him out and then he slept for another hour and a half. Little guy woke up at 7:30 and was ready for action and finally ready to play with Daddy! (Finally) If there was no IV thing or tongue stitch, you would not have even known he had just had surgery. He was smiling and playing like normal. Hard to believe! I am amazed at this kid every surgery, he does better and better. He slept in the car on the way home (only 30 minutes), ate some cereal and peaches and is playing right now, so much for a nap! I just hope he will sleep so we can sleep.

The rules for post-op are: 1-arm restraints 2-no dairy products (ie formula) our PS says that dairy products irritate the stitches and cause redness, soreness and swelling, so none for 2 weeks-This was one of the things I was afraid of and had never of before now, but I guess it makes sense. 3-he can use the bottle and spoon as long as I control it and not him. I put it out near his lips and sort of tilt, or pour it in. I used a syringe for the first 24 hours and then switched to the spoon and bottle.

He doesn't seem to be in pain, we are using just plain old Tylenol...He is an amazing kid! I guess we are extremely lucky, he took 21 ounces in the first day and is eating fine! Glad to be home, glad it is all over with, glad my little guy has bounced back so quickly, glad to have all (or most of) the anxiety past, and hoping to finally get some much 
needed sleep.....Thanks for all the good thoughts and prayers, they worked!!!

Hugs,  Beth

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> Questions (from you and anyone else!) - What is the tongue stitch? Do 
> most plastic surgeon's use this?

Hi Carrie and all others about to undergo palate repair. The tongue stitch can be seen in the gallery in Caleb's page. They have a pic of him post-op. They were not sure if they would use one on Paul or not, and did. It looks worse than it is, as he drooled, the drool and blood ran down the stitch, but it really wasn't too bad, he was not all that thrilled with it, and keep moving it around.

Paul didn't look real bad after surgery, but his eyes are always the one place you notice. They were sort of out of it and sad, but perked up after his first little 45 min. nap. I could tell his mouth was swollen from the inside, but you really couldn't tell.

The blood smell was there and I think I hate that the most. After a day of smelling it, you feel kind of sick. He never vomited or anything like that. Paul was an exceptional case, I realize that.

He slept pretty well last night, with us some and also in his crib some. This morning he is playing and eating cereal and peaches...it is amazing! We are playing without the arm restraints as long as rob or I am right there next to him to prevent anything in the mouth. Well, better get going, will try to catch up on all the posts later. Hugs, Beth

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Paul update:  He is doing GREAT! We are so happy to have this behind us, but I think the stress is still pretty high. Rob and I are fighting a lot still (we usually do at surgery time). Hope it settles sown soon, he is going to work tomorrow and I am staying home with Paul, maybe that will help. Paul is eating well, lots of cereal, fruit and veggies and just water, Pedialyte or diluted juice to drink. I can tell he really misses his formula! I did read some things about dairy products irritating the sutures and causing infections...interesting.

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>It sounds like things are going well for Paul I hope he continues to do well. Matt and I really 
>took comfort in your report. We are 19 days away from Palate Surgery.

Linda and others getting ready for palate repair,

I know Paul was an unusual case of recovery with it going so well, but it does happen! Paul had Morphine after his very first lip surgery, he was only 6 weeks old, and had a hard time coming out of anesthesia. The 2nd surgery I do not think he had it and we used Tylenol w/ Codeine for the first few hours post-op. This time I am not sure if they used it during surgery, but did not after.

They asked if I wanted to give Paul Demerol, but I did not. He usually does ok without any narcotic and I am scared of them because of the earlier trauma with his breathing problems. I gave him Plain Old Tylenol (POT) and he was ok, they kept trying to push the Demoral, and finally at 5pm (7 hours post-op) I agreed. I was tired of being bashed by the nurses, Paul was fine, not even fussy, but he was starting to get fussy and against my better judgment I let them give it to him. Of course I was right, it put him in a daze, did NOT help him sleep, and after about an hour he was more edgy, more fussy and generally unhappy...a clear case where mom knew best. From that point on all we used was POT and he is still taking it every now and then, as I think he needs it. Honestly at this point I am pretty sure he is not in any pain!!! He is a very quick healer, as is my husband and myself. I knew all along that the little guy was probably just hungry, but gave in because one of the nurses made me feel like I was a bad or negligent mom because I wouldn't let him have a strong pain med...I should have been stronger, but hey, the guy is doing great and I am sure he forgives me now for drugging him out :)))))

>I also find it interesting about the instructions about not using dairy
>products after surgery. Did they recommend Soy formula?

The resident said it was ok to use soy formula but then the PS said no, that it still had the same thing that caused irritation and possible infection????  Still unsure on that one, but Paul seems fine without his beloved formula.

>Is Paul walking? Sam has been a full blown walker since he just turned
>10 months. The PS said that sometimes when the babies are so active (and
>boy is Sam active) and walking they have a tendency to fall a lot while
>wearing their "no-no's"(arm restraints).

Paul is not walking yet, but is standing and pulling up and also cruising the furniture and crawling. We take off the arm restraints if we are sitting right there with him, but on if we are not right next to him. We use the infant size ones during the day, which barely fit, but give him mobility and still keep things out of his mouth and the bigger size on at night when we are not closely watching him.
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We are doing very well for only 3 days post-op. Paul is an amazing kid and a very quick healer. He is pretty much back to his normal self, a little clingy at times, hungry a lot since no formula, but otherwise just doing well.

I am so happy to have the surgery over with, by far the worst part has been the week prior with all the anxiety. Post-op was not bad at all. He is eating well, no fights except the next morning and once we got him some real food he was fine. He is using a spoon and bottle, both of which I need to make sure to control. He is taking water and lots of fruit, veggies and cereal, and seems pretty happy. Looks like I will be able to go back to work on Tuesday as I have planned. Post-op appointment is on Monday.

Now, if I could just get him to nap.....he refuses to nap, has only taken a 1 hour nap all day today. The arm restraints piss him off and he can't suck his beloved finger, which is how he usually falls asleep. Oh well, we are doing so much better than I anticipated.

***********************
Well, Paul had his post-op yesterday, and everything looks great! We were able to stop using the arm restraints (YEAH!!!) so Paul is sleeping much better already! We are still off formula for at least one more week, the PS is really serious about that.

Has anyone ever heard that dairy products cause irritation/redness/swelling to the suture line, and even possible infections??? It seems weird, but we are doing it, and Paul has adapted.

We are thankful that he recovered so quickly and that this surgery is finally behind us. Looks like we will be surgery-free for a while, maybe even a LONG time! Thanks for everyone's support when we needed it. I am here to offer support to any parents facing the palate repair!


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