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

This one is about: Andrew's  Palate Repair - Long Update


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Hi everyone, here is my "slightly" longer :) version of Andrew's surgery story and what's been happening over the last 10 days. This is long. For those of you who haven't heard for the millionth time, Andrew had a closure of the soft palate at 11 months of age.

Day 1: Wednesday

We got to the hospital at 5:45. Checked in and went right up to the maternity/pediatrics ward. At our hospital, the new moms and children are in the same ward. So this was the same place where I had been when Andrew was born. It is the same place that he had his ear tubes put in in August, but of course we went home the same day. They weighed and measured him and we dressed him in their pajamas. Then we went to the playroom to pass the time. He didn't cry from hunger at all. At seven Darren carried him and the aide pushed the hospital crib down a number of hallways to the main hospital pre-op. After 15 minutes we met the anesthesiologist. We had spoken to him the night before. He told us about his daughter's surgery on her tongue, when she was younger than Andrew. He said that she wouldn't eat for 5 days. He said that he would carry Andrew in himself and give him some gas before putting in the IV.

Then the plastic surgeon came in. She was dressed like she was going to a corporation board meeting. She announced that now she was thinking that she would do a z-plasty instead of the other way (forget the name). I decided to think that she was a creative genius instead of just flaky. Then this goofy guy walks in and talks to a family across the room from us. They have a young boy in the bed (who is apparently heavily pre-sedated :) Then he walks over to our dr. and they hug. She introduces Dr. B to us. Says that he is "the" ear surgeon. I had seen a board in the hall of the pediatric ward with many polaroids of kids with giant bandages on their ears. Below was the date and name and town or country that they were from. He shakes our hands and asks Dr. R if she is going to remove Andrew's pacifier before surgery. But that she is a miracle worker and probably wouldn't have to. After another minute of mutual kissing up, he leaves. I figure if he likes our Dr. then she must be okay. Later on in the hallway, there was a board with pictures of the hospital staff on it. That was when we realized that our ENT was the Chief of Surgery! And he picked the PS, so maybe we weren't leaving our precious baby in the hands of a quack. The anesthesiologist comes back to take Andrew. Then a surgical nurse snags him and says that SHE will carry him to surgery. So off they go at 7:40 am. And we went to the waiting room. There were 12 stations in pre-op, but there appeared to be only around 6 groups of people or families waiting. After an hour, a surgeon goes over to a lady and a guy. (We think that she was the wife of the patient and the guy was his son from a previous marriage, not that we were listening...) This surgeon announces that things look pretty bad. They thought that this guy just had a urinary blockage, but that his abdomen is full of cancer from his right colon. And there is no reason to remove the cancer, because there is so much. In front of everyone! I try to pretend that I am looking at my book. This lady becomes hysterical, because this is pretty much of a death sentence for her husband. And she is saying that it isn't fair because their son is only 15 years old. I pretty much lose it and start crying myself. Then he announces that another surgeon is going to come down and re-route the patient's colon around the cancer. Later on two other surgeons come by and talk to these people, but take them out to the hall to be private. You would think that they would have a special room!

Two hours come and go, and I am getting antsy. Then these people are told that they can see the patient and they leave. This poor guy has had his insides rearranged and my baby is still being worked on! After 3 hours the pink lady says that she has checked and that Andrew's surgery is fine, but taking a little longer than expected. (By the way the PS said 2 hours, and the anesthesiologist said 3 hours. I guess he knew better.) Finally at 11am the pink lady says that they are done and for us to wait for the PS. After 15 minutes, the two of them come out.

The anesthesiologist says that everything went perfectly, no breathing problems, etc. Then the PS says that things looked good, she did do the z-plasty and that he has a tongue stitch, that she will leave in until tomorrow, just out of habit. So we go to pediatrics to wait. They bring him in at noon. He is just lying there and has that "dead look" in his eyes. All wrapped up in warm blankets. Tongue stitch is about as bad as you can imagine. The recovery room nurse just went on and on about how terrific Andrew was. (How could they tell?) Apparently he kicked out his IV out of his right foot and they re-did it in his left foot. I really hate to think about what he went through when he came to in recovery. He was probably completely deranged. By the way he had marks in both inside elbows and hands from where they had tried to put in an IV. They had made him restraints out of x-ray film. They were awful, so we replaced them with the ones that I had bought. I had gotten 7 inch ones. But they seemed too long and too narrow, so I got 5 inch "plus" (wider) ones. Neither seem right. I got into a chair - a sort of rocking chair - and they gave me Andrew to hold. He was whimpery. I had to hold him kind of sideways so that his mouth could drain out instead of into his stomach. His spit was very faintly pink, by later on in the afternoon, it was completely clear. There has been no bleeding since. That first day, his spit was really thick and goopy (sorry yuck!). He had morphine every two hours. He would get grumpy after an hour and a 1/2. When he got grumpy he would only be held while we stood up. He would want to be passed from parent to parent, in the hopes that one of us would make him feel better. By that night we found that he liked to just lie in his bed. We used the wind up musical animals a lot. He would sleep off and on throughout the day. Then he slept from 7 to 9 pm. Two whole hours! My mom came and visited in the afternoon. Andrew usually cries when he sees her because I often leave him with her for an hour or so once every couple of weeks. He was very upset and I made her leave after half an hour. Then my sister and her husband visited around 6:30 pm.

He was happy at first because they had given him new socks, and a new toy truck with little people. He got really upset, I made them leave. Darren stayed until 11 pm, I slept from 9 to 10. At 11 pm I actually got a smile out of him! The nurse came in every hour. At 1 am, she gave him a Tylenol suppository, he slept until 3 am! Needless to say, I didn't get much sleep, maybe 4 hours total, but that isn't bad. The nurse explained that the morphine wears off more quickly, and the Tylenol sticks with them better.

Day 2:

Andrew was finally up at 5 am. Darren showed up at 6:30 am. He had brought a bunch of bibs and cloth diapers for drool. Andrew's nose had gotten red from rubbing it on the towels that they had. I went home and showered. Unfortunately I missed the PS who came by at 7:20 am. He got his tongue stitch out. By this day, his face had swollen a bit. His tongue was pretty swollen and stuck out still, even without the stitch. He looked a bit like pictures that I have seen of Down's Syndrome babies. As the day wore on he seemed to be more like himself, off and on. His nanny Erica stopped by around 2 pm. I hadn't realized how much this was going to affect her. She has been with him usually 30 hours a week since March, so I guess they are rather attached to each other. She gave him two balloons and a cat toy. He really cried when he saw her. (He always cries when he sees her in the morning, and then cries when she leaves at night.) Then a few minutes later, a friend of mine who works one floor up as a nurse practitioner in a OB/GYN office stopped in. She was wearing her white coat, now he was really crying hard. They both left. Andrew showed some interest in Darren's soda, so we tried giving him some apple juice. The nurses couldn't find the parts to make the syringe, so they were relieved that I had the Ross nipples. Andrew would have nothing to do with them, so we used little cups. He took many sips, but most just ended up oozing out. But he was enjoying it. Then my mother showed up. We had tried to time it at a good time after his morphine kicked in, but he cried anyway. So she left. At 4pm a nurse brought in a vcr and we actually watched 15 minutes of a WeeSing video. It must have been the morphine, because he won't watch it at home. A friend of my mother who works in the hospital library stopped by. He was high on morphine and didn't care. His IV was now on a pole and we went for a little walk. But the new parents and their tiny babies eyed us suspiciously and we went back. It turns out that his IV had gotten screwed up. At 5 pm, two nurses pinned him down and fixed it and attached an IV pump. He was much happier. He got sort of attached to the nurse's stethoscope. He held onto it until midnight! They brought "dinner". Chicken broth, cranberry juice and peach jello. He drank all of the broth plus two more cups that the nurse brought. He tried the juice, but it made him cry. I ate the jello. My sister and Doug stopped by unannounced. This ticked me off. He cried a lot, I made them leave.

Andrew was now getting annoyed at his IV and arm restraints. Darren left at 10:30 pm. I sacrificed sleep to watch ER from 10 to 11. Andrew slept great. Woke up when the nurse came him Tylenol at 4 am. (She only stopped in every two hours this night.) His last morphine was at 4 pm that afternoon. Went back to sleep from 4:30 to 5:30.

Day 3:

Andrew had a really gross amount of chicken broth. Probably 12 ounces. I was beginning to worry about how much salt he had had. While I was getting more broth in the kitchen, the little boy with a new ear stumbled in with his mom. There was a strange tube with blood thing attached to the giant bandage. A temporary blood supply? Who knows. Darren showed up at 5:45. I went home and was back in time for the PS who came by at 7:45. She was amazed at how quickly he had started drinking again. She ordered the IV out and discharged him. The breakfast showed up. The jello was cherry. Not so good. My friend from upstairs brought us coffee and bagels. Andrew was asleep this time. She was barely holding back the tears. (We had been in the same new moms group and she was probably thinking about her baby) We left by 9:30. The volunteer who wheeled us out (both of us in the wheelchair!) said that 20 babies were being discharged that morning!

When we got home, Andrew tried to walk and fell flat on his face. He was really cranky and stumbly and wouldn't eat the rest of the day! Needless to say it was a bad day for everyone. Darren had to go get Tylenol suppositories because Andrew refused to take the liquid with or without codeine. It was too windy and cold to go for a walk. We went for a drive to kill some time. However he slept from 9pm to 6am or so. except for 15 minutes when Darren had to carry him, around 1 am which doesn't count since I didn't have to get up!

Day 4:

Darren got up with Andrew while I slept until 7 am! He was now allowed formula, and Darren got him to have 3 ounces. He didn't run around like he had on Friday. He just cuddled with me on my lap and took two naps in the morning. In the afternoon he got quite cranky and wouldn't eat. Darren's back went out and we had to put him in his stroller and make circles around the house. Just to get him to take one spoonful. He finally had a BM since Tuesday! I went out and got him a laxative, but before we gave it too him, he got diarrhea for two days. He would only eat the broth from our soup for dinner. It was still too cold to go for much of a walk. We didn't use the arm restraints much today, except when he was sleeping. He just wasn't putting anything into his mouth.

Day 5:

Slept well again, but woke up early and really ticked off and wouldn't eat. By now he would only drink one spoonful of formula per revolution around the house in the stroller. And only if we mixed a little melted frozen yogurt into it. Ifound a poncho thing that someone had given Andrew when he was born. It was too big to use last winter. I cut the hood off of it. It is now just perfect for using with the arm restraints. Afternoon was bad again, Jacquelyn and Doug stopped by after dinner, but things weren't too bad. Found out that Doug had been fighting a sinus infection for over a week. And that he had been really sick the Sunday before Andrew's surgery. It's a good thing that he hadn't given him something! Only would have the broth from our soup for dinner again. He is now getting really ticked off if we put the restraints on him. We are now using the shorter 5 inch ones. And taping them on at night.

Day 6:

He woke up happier. Had 6 ounces in the early morning. Darren stayed home from work anyway. We went to Toys are Us and got a wagon. We played in the backyard and had fun. We went for a walk to the produce place and bought a pumpkin. Still Andrew only wanted the broth from our soup for dinner. He has been really cranky right before he goes to sleep for the night or a nap. Lots and lots of circles around the house in that stroller. We ordered a third set of restraints. The 7 inch size in the plus model. The lady feels bad and sends them out free! I gave the information about ordering them to the hospital and our PS so she will get lots of business because of me.

Day 7:

Darren goes to work. Things are good. We go to the car wash, the video store, the craft store and then the park. He just sits like a lump in his stroller at the craft store. The clerk says "what a good baby". Andrew takes his nap during our lunch so we don't have to eat in shifts. Darren was hoping that he would lose weight this week, but we have gotten too good at sneaking food, and we have both gained weight! Darn. Andrew got really cranky around 4 pm. By 5 I call Darren and make him come home. At 5:30 I decide to take Andrew's sweatshirt off because he is all red where the label is. He is covered with HIVES. I have no idea why because he has been on such a limited diet. Hardly eats anything for dinner. He wakes up at 5:15 am.

Day 8:

Andrew has a lot for breakfast. Darren goes to work. Andrew has 30 ounces of formula by the time we leave to see the PS at 4 pm! Spoonful by spoonful. We put a regular bib then a plastic bib, then washcloths under his chin to catch the drips. Feeding him in the stroller is best, since he can't lean over and "suck" the stuff out of the spoon. The PS says NO SUCKING. She is really pleased with his progress. I gave her information about Ross nipples, and the arm restraints, and WideSmiles! I gave her my winter '96 copy with updated info on the web page and cleft-talk. She thinks that it is just so great. She says bring on the pureed food, which I had anticipated and purchased that day. Andrew had a whole jar of food for dinner, but acts surprised when it hit his tongue. He wakes up at 3:45 and never goes back to sleep. ugh.

Day 9:

Andrew has lots of formula at 6 am. Today is the first day that we have his nanny back again. She has a cold and her daughter has pneumonia again (15 month old), but she insists on working. She calls at 1 pm that he has been crying since 11:30. I go home and give him Tylenol you know where. He seems pretty happy and doesn't even notice when I leave! He only takes only two 30 minute naps. He seems to be teething on top of everything else. He eats a ton of food for Erica. I have to send Darren out for more! It was raining so she got stuck going around and around the house with him in the stroller and wagon. If we take the restraints off, pop go the fingers into his mouth. He sleeps better except for 15 minutes at 3 am when I had walk around with him until he fell asleep again.

Day 10:

Today is Friday and we still haven't broken him of only taking liquids from a spoon. He now refuses juice. And still I have to put a little melted frozen yogurt into his formula! Oh well, we can live with these things for another week and a half. He is definitely going back on that sippy cup! I haven't decided if he gets a bottle or pacifier back again. He seems to need it. So we'll see. Maybe this weekend I'll make the 7 inch plus restraints into 6 inch ones.

Well we certainly have survived so far. It just gets better and better. He is hardly drooling at all! Just like an average baby. He is back walking as well as he had before. He was able to walk in shoes by Wednesday. We are noticing that his voice is a little different. Deeper and some new noises. Nothing as good as a dadda, but that will come. He is a bit of a brat, crying if we don't let him do what he wants. But that will come to an end in a couple of weeks! Sorry that this was so long.


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