Palate Repair Expectations

So on the PRS network, it seems lately a lot of babies have had their clefts repaired. One is being done Monday and the variety of responses about what to expect varied greatly. I want to share the responses so that those with PRS can also get an idea of what to expect, and those who do not know what we go through.

Story 1:My daughter's palate was repaired this past summer (she was 11 mos old). The surgery was completed within a couple of hours. She had the palate repair, her tla undone and tubes placed in her ears all at the same time. As soon as she was in recovery and waking, they allowed my husband and I in to see her. I was somewhat prepared as I have seen others immediately post-op before but I must say, she looked pretty rough. There was alot of blood from her mouth, nose and ears (ears probably bc of tubes, not palate). She was also very cranky (understandably) and didn't soothe very well. All she wanted was to be laying on my shoulder and so that's where she stayed for about 99% of her hosptial stay. She was allowed to begin using her haberman bottle again almost immediately (within a few hrs), but she didn't suck, never did, I squeezed the formula into her mouth. Initially all she would take was a small amt of pedialyte but quickly returned to a few ounces of formula every couple of hrs. She was in the picu and it was a private-ish room but no bathroom (which was rough for her pregnant momma all night long, lol!) She only stayed overnight. Surgery was at 7 or 8am and by noon the next day we were driving home. At midnight the night of her surgery, I texted my husband (who was at home with our other children) and told him I didn't think there was any way she would be ready to come home, she was a mess. About 3 or 4am, it's like someone flipped a switch. She settled down, smiled and giggled a few times, finally fell into a good sleep, woke, ate a few ounces of formula. And from that point, continued to improved dramatically and by the time we got home, she was ready to crawl around and play with her brothers. We were sent home with a rx for tylenol with codeine. She used that for the first day every so many hrs as prescribed and then the next day, just regular tylenol with the rx for bedtime and same for the next 2 days. After that I think we had a day or two of just regular tylenol and then nothing, she was back to her lovely self. Really she recovered amazingly fast. She also just blossomed after her surgery, she started gaining weight, looking healthier, her hair started growing in and got long and shiny. That night in the hospital was rough and of course seeing your baby looking so bad and in so much pain was rough but all in all it wasn't as bad as I had envisioned.

Story 2: my daughter had a palate repair done last november when she was 10 months
old and hadn't had any prior surgery.
being honest it was tougher than i thought partly because it was so
upsetting to see her post op looking battered and bruised and seeing her on
itu looking so vunerable. she was there for 2 days and i was glad of it just
to know that she was being closely monitored.
it was also tough trying to get her to eat and drink again but with alot of
patience and analgesia it worked.
do be kind to yourself,have people around on standby but make them aware
that you may or may not want to them to visit-we didn't always feel up to it
and get people to do practical things eg have some food for you and do try
and get some sleep as it is physically and mentally exhausting.
this is not meant to sound negative as she is thriving now and starting to
chat away and her hearing has improved and it is lovely to have it over and
done with.
also do chat it all through with the doctors about what to expect and make
sure you can go to the anaesthetic room with them if you want

Story 3: My son has just a palate repair and ear tubes with not other
surgeries. He didn't have to go to the ICU, but they did have a
heart rate and oxygen monitor on him for the first 24 hours. Even
tho' it's only been a year I can't recall if he was released after 2
days or 3.

One thing that helped my nervousness was to remember this was the
surgery we'd been focused on since the day he was diagnosed and it
was a huge milestone toward his speech development.

I don't know if you've been to the site Nancy put together several
months ago, but she has a good section (yes, I'm biased I helped
write it :-) on the palate repair surgery, what to keep in mind and
what to take to the hospital, etc.

http://www.pierrerobin.org/cleft-palate-repair.htm

Two things to prepare for: First, it will break your heart to see her
right after surgery. She'll be groggy, swollen, and there will be
blood. Second, if all goes well, within a few weeks you'd never know
she's been through surgery recently. They truly do recover so much
faster than an adult would.

Story 4: Hey my Andrew hurt so bad he didn't need the arm restraints. We used them
for a couple of days and then forgot about them. Our hospital supplied them for
us. The first palate surgery the recovery was about 7 days until he ate.
The next one he ate that night. The first one was the worse the others were a
piece of cake. He had 3

Story 5: alate repair was a lot harder than I expected! It all
started off in the recovery room when he wouldn't wake up from the
anesthesia and started obstructing cause everything was so relaxed. He
stayed the night in ICU and was actually doing really good the next day
and was discharged from there. We were home for about 3 hours and his
saturation levels started dropping again into the lower 80's, so back to
the hospital we went. The plastic surgeon said that swelling reaches
its peak at 48 hours after surgery and his swelling had peaked and was
obstructing his airway. So, they put a nasal trumpet in his nose and
gave him oxygen for 2 days until the swelling went down. We just got
home, and he is doing fine. They said that sometimes this happens with
palate repair, and I don't understand why they let them leave the
hospital before the "peak" occurs, just to make sure they don't
obstruct. My husband thinks that the insurance says how long a patient
should have to stay in the hospital after any particular surgery, and
doctors basically have to discharge, if the baby looks okay. They think
1 night for palate repair will be safe, just another reason why my PPO
plan sucks. Some medically-uneducated person decided that my baby only
needs to stay one night in the hospital....crazy! So, we are home and
hopefully done with Childrens for good, all we have to do is go get the
g-button out in 2 weeks. I'm so glad that palate repair is over now,
thanks for all the replies to my questions.

Story 6: I know exactly what you are going through. rhianna had her palate
repair when she was 10 months old. She will be three in Aug.I will tell you
this after the surgery your little one will look bad, Rhianna was puffey and
bruised. She was hooked up to a vent because of the PRS. She slept for the
next day and a half, when she woke up she was not as cranky as I thought she
would be. The hard part is when you have to feed from the sryenge. It takes
forever. Rhianna was back to her old self after a couple of weeks.I can say
for myself that the surgery and hospital stay was not as bad as I expected

Story 7: The latest e-mails about palate repair really peaked my interest because my 1
year old granddaughter as of TODAY :) had her palate repaired exactly 2 weeks
ago today. Zoe only had a small cleft in the soft palate only. Just to give a
little background, they didn't even realize at first that she did have a cleft
because she was doing so well the first 2 days. She is a twin and there were no
other issues and both babies went home after 3 nights. (C Section because Zoe
was breech) My daughter carried full term and Zoe was 6-4 and Ty was 5-15.

My daughter and husband were told to make an appt. with a Cleft Palate team.
They live about 20 - 25 minutes outside of Philadelphia, so they had several
options.

Zoe's first year of life has been uneventful in terms of the cleft. Yes, she is
tiny, but loves her solid food. She never had any type of breathing issues.
Initially, the doctors were always concerned about her weight gain, but now say,
"What a petite little girl!" Developmentally, Zoe and her twin brother both
started walking before they were 11 months old.

What I have concluded from reading the e-mails concerning the repair is how
DIFFERENT everyone's experience is. I only say this because I think it is
difficult going into the surgery and recovery with certain expectations and then
creating more worry and stress for yourself if they don't follow the pattern of
"expectation".

Even though Zoe's opening was very small, her surgery lasted from 9 - 2.
(including recovery & tubes) We were informed every hour on the hour as to how
she was doing and everything was going as planned and she did great. We were
told that her mouth opening was very small and this made things go a little
slower, but still extremely successful. Initially, her little face was quite
swollen and I am assuming that because of her small mouth, the swelling of her
tongue appeared significant. At first, her tongue appeared to take up the
entire opening of her mouth. However, her oxygen level stayed at 99%. From
everything I read ,(you can tell I am the one who has time to do all the
research and not my extremely wonderful daughter who has 1 year old twins and
another active boy who was 4 1/2 when the twins were born lol) we were told that
"you won't believe the difference in her swelling in 24 hours. Well, 24 hours
went by and she really did not look a whole lot different. Yes, concern, worry,
tears, and questions certainly did arise. However, almost 48 hours to the
minute of the end of surgery, Zoe's features started to reappear. Yes, she
still had a cute little nose and bright blue eyes. Her 6 teeth were still in
place and believe it or not, her tongue was the same size it was prior to
entering the OR.

We were also told that typically you stay 1 or 2 nights---mentally, we prepared
for 2. We stayed for 3 and of course were disappointed. We were told that she
would probably be interested in trying a popsicle or juice from a syringe after
the first day. This interest did not happen until day 3. Some people told us
their child was interested in playing in the playroom of the hospital. Zoe
would not leave our arms from Wednesday night (after hitting her head twice on
the sides of the metal crib) until Saturday when we were discharged.

I read where someone said their doctor said "No Sippy Cup or Bottle for 3
weeks. Our surgeon, who I will tell you is highly regarded in the Philadelphia
area, as well as through the United States, said she could drink from a sippy
cup as soon as she showed an interest and even said the bottle we were using
with the small nipple was fine. Zoe never had any arm restraints and it is
almost as if she knows not to put things in her mouth as she had previously
done.

As far as her personality, I would describe the first couple of weeks as "out of
sorts". She was clingy and somewhat whiny and just seemed like she couldn't
figure out what she wanted or what would make her feel comfortable. Each day
seems a little better (as I am told by my daughter), but the best thing is that
it is behind us.

Wow---I wrote a whole lot more than I ever intended, but I think what I really
want to say is: Medicine is NOT black and white. Just because one child's
experience with the cleft repair went one way does not mean yours will be the
same. Take each hour as it comes and know you are one hour closer to recovery!

And finally, tips from the PRS Network:

Typical hospital stays for cleft palate repair would be one to three days, dependent on the child and the surgeon. Most surgeons want the child weaned from the bottle prior to surgery. Some surgeons want the baby to be weaned from the pacifier as well. Make sure you discuss all these issues with your team. It is very important to know what their post surgery guidelines are before surgery, so you won't have any surprises.

For some babies, this is their first surgery. We have some tips for parents and caregivers that have been received from our parents.

* For working parents, try to take off as much time as you can.
* Ask the surgeon about the type of splints they use and their instructions on how long they are to wear them. We have heard great stories about Snuggle Wraps
* Take old clothing for the hospital stay, babies will have some bleeding and you will be doing lots of cuddling. Also, take extra clothing.
* Be prepared for that first look after surgery, there will be swelling and blood, that is normal.
* If the weather cooperates, have the baby wear long sleeves and the splints can go over the sleeves.
* Be creative with that soft food diet. Take their favorite foods and blend them, remember to provide healthy high protein foods. Stock up on these items before the surgery, so you don't have to leave the baby to go grocery shopping.
* Pain relievers on a regular basis are crucial. You don't want the pain to get ahead of the baby. This is especially true the first few days. Review the medications and usage with the hospital staff in detail.
* Try to get as much rest prior to the surgery, you will need it!

One of our parents compiled this comprehensive packing list for cleft palate repair surgeries.

Child's Pack List
stroller
favorite blanket
bumper pad
stuffed animals
crib mirror
crib fish aquarium
CD player and CD's
books
small picture album w/family photos (fun to look at)
videos
nightlight
front button onsies (easier than over-the-head) for ride home
old bibs
sweatpants
socks
front button P.J.'s
sippy cups (our entire collection, what did NOT work pre-op, may work post-op)
open-end cups
favorite baby food and juice (hospitals usually have the basic flavors and only apple juice)

Parents Pack List
old comfortable clothes (they will get bloody) including t-shirts, sweatpants, tennis shoes
slippers
robe
toiletries
camera/film
camcorder/tapes
list of phone numbers and email addresses to update family
money for drinks and food
magazines, books, Baby Book
pillows packed in a laundry sack (used later for dirty clothes, hospital pillows are too flat)

So this is what I get to look forward to in about 19 days.