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

This one is about: Sarah's Palate Repair


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The following is excerpts from several posts on what life was like a few days after Sarah's palate repair:

Sarah's mom, Ellen writes:

I was with Sarah in her hospital room for almost 6 hrs straight -- I went to the bathroom and sometimes to the cafeteria when she was soundly sleeping. I'm sure glad I stayed. The nurses always seemed so busy doing charting and paperwork that I don't think she would have gotten much attention except for vitals and medication (which I even ended up giving, they just handed me the little syringe and off they went.) I did every feeding & diaper change too. I was glad to do it but I would have appreciated a nurse taking over once in a while but nobody asked.

It's been a long week but Sarah is doing well. Fussier than usual of course with no thumb or bottle for comfort but lots of playful times too. It's much harder getting her to sleep -- for some reason she doesn't want me to sit in a chair and rock her. She gets really upset and keeps arching her back and head. I think she thinks I am going to feed her. Anyway once I do get her to sleep by standing and rocking she sleeps pretty well. Feeding is still a battle, no technique has worked well for her so we just kind of force 2 oz at a time in frequent feedings. It's been tough keeping her happy (forget arm restraints!) but I know life will be back to normal soon. I'm grateful she doesn't seem to be in much discomfort.

I know a lot of parents felt like you do about missing the old face. I didn't, although I loved her just the way she was. I was eager for her to have the lip surgery and am very happy with the result. No regrets. A bilateral cleft is very distorted as you can see from her gallery picture and though I accepted it I very much wanted "normalcy" in her face. I was born with a unilateral cleft and my emotions were definitely tied in to my past self-esteem problems of wanting to "look like everyone else".

Sarah is doing well but feeding is very tough. She clamps her mouth shut, arches her back, and fights every drop. I know things will improve soon and we just have to hang in there until then.

Also the Ross nipple just isn't working out well; I can't control the flow -- it just pours out. I need to practice my technique more.

Joanne responds:

Try to hold it a little more upright (or upside down, I guess) and only barely squeeze it. - - and just a tiny squirt at a time.

Ellen responds:

I'll keep trying. I'm really stressed out about how to feed her. I've tried the Ross nipple, syringe, paper cup, catheter tubing on syringe. Same reaction every time--clamps her mouth shut and arches her head way back.  She wants her beloved bottle and nothing else!!! I don't think its the pain aspect; she's just mad and frustrated.

Joanne's Response:

Things tend to turn around at the five-day mark.  Hang on. You'll both make it.  Meanwhile, be sure you are watching for any signs of dehydration (stops wetting, strong urine, listlessness, etc.)

Keep us informed, and keep trying.  Force if you have to. It's ugly to do, but you do what you have to do.  (Yes, we ended up forcing one of ours.  It was a 2-man job, but we got liquids into him.)

My Joey clammed up tight as a drum when he had his palate surgery, and we were very concerned about about dehydration.  One thing that worked - - TAKE THIS WITH A GRAIN OF SALT!!! - is that I would use the oral syringe while he was sleeping and slip it in very gently just inside his lip, and against the cheek, and then v-e-r-y slowly, a 
drop at a time, I dripped Pedialyte in to his mouth. He never choked, and he never woke up.  Just swallowed as it went in.

The other thing we did was a forceful feeding while he was awake. Jesse held him and while he struggled and screamed, I squirted (prepared us for Jessica).

Remember, these were desperate measures for desperate times. I did not enjoy doing it, but it kept my boy from dehydration. After about 5 days he became a more willing eater, but still not voracious. He wanted to sink his teeth into something and that liquid diet just didn't cut it. (he was 20 months old.)  We discovered that he wanted Daddy's coffee, so coffee is what he got!  (I know - a natural diuretic, but at least is was something).  All I can say is, it does get better and easier.

By the way, you can see Sarah Rose in the Wide Smiles Photo Gallery.

http://www.widesmiles2.org/gallery


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