Pre-surgery was nothing particularly stressful. The pre-op testing (blood
test = angry baby, lots of screaming), and getting the paperwork from the
pediatrician's office to the surgeon's office in time was probably the worst
part.
Our little girl bounced back admirably. I don't know if this is true of all
babies, but she's surprisingly adaptable. She woke up from the anesthesia in
a pretty rotten mood, which is highly understandable. Being a first time
mom, or maybe I'm just a sucker, I picked her up whenever she cried and
ended up holding her in my arms pretty much the entire night in the
hospital.
Also, our surgeon (Dr. Robin Dyleski - truly a terrific doctor, we highly
recommend her to anyone in the NY area) recommended that we have her
completely, 100% off bottle and on to sippy cups (obviously not spill proof)
long before the surgery (we had her off bottle by mid-september knowing the
surgey wouldn't be until december at the earliest) because using a bottle
with all those stitches in the mouth would be unpleasant and could prolong
our stay in the hospital (if she wouldn't drink, they would have needed to
keep the IV in her arm, which means we couldn't have taken her home). We
used the "especially for baby" brand tumblers and our surgeon said they were
perfect for post-op use since the lip didn't go far into the mouth. I think
I picked them up at babies r us. We were fairly lucky - by the next morning
(after one of the longest nights of our life; she wouldn't go into the
hospital crib, even though we'd brought her blankets and duckie from home;
the nurses had to come in every 4 hours to take her temperature and give her
the tylenol - both rectally - but they were staggered so we were being
disturbed every 2 hours all night long), our little girl was ready to drink
as soon as the surgeon said it was ok. We were discharged as soon as the
nurses and doctors got all the paperwork together the next day.
We found that just milk and juice didn't keep her hunger at bay for very
long while she was still on the liquids diet, so we picked up Pediasure
which seemed thicker and kept her fuller for a bit longer. Though, we should
have switched back to milk & juice this morning, since we wanted her to
resume soft-solid foods this evening.
To keep her fingers out of her mouth, the arm bands just didn't work for us.
Again, maybe I'm just a total sucker, but I just felt like I was torturing
her to keep her arms locked straight. She's normally such a cheerful,
smiling baby and all she did was cry and whimper, so I took them off and she
went back to being her normal happy self. During the day, we watch her like
a hawk. At the first sign of putting fingers in the mouth, we gently push
her hands away. We just keep at it during the day. At night, we took her
mittens which are a bit big on her, and put them on her before putting on
her pajamas. Then we put on her pajamas, not letting the mittens come all
the way through - this way, even if she did try to stick her fingers in her
mouth in her sleep, she can't get more than 1/4 of an inch of pajama sleeve
in there. This arrangement didn't seem to bother her nearly as much as the
arm band things. Though, I'd consult with your surgeon about this; from my
online research, apparently some surgeons cover the sutures with some sort
of oral device so it doesn't matter at all if the child sticks the fingers
in the mouth.
Honestly, except for worrying about keeping her fingers out of her mouth,
she's pretty much back to her usual self today, 3 days post surgery. She's
laughing and playing, and, while I want to swaddle her in a blanket and keep
her close to me until I forget the image of her passed out from the
anesthesia on the operating table, she's completely unfazed by the whole
thing. You'd never know she just spent 3+ hours under general anesthesia and
had her mouth completely reconstructed.

If you have specific questions, please feel free to ask.
-Marla

-----Original Message-----
From: sticklersyndrome@yahoogroups.com
[mailto:sticklersyndrome@yahoogroups.com] On Behalf Of Victoria Adamson
Sent: Friday, January 11, 2008 2:08 PM
To: sticklersyndrome@yahoogroups.com
Subject: RE: [Stickler Syndrome ] Cleft Palate & repair surgery


Hi,

My son is about to have the exact same surgery in Febuary, my husband and I
are very nervous about the surgery and the post surgery. I would really like
to hear about your experiences and the things you went through prior to the
surgery.

Looking forward to your reply.
Victoria.