What to expect with Cleft Palate Repair Surgery (Plus free printables)
Cleft Palate Repair surgery is an uncomfortable reality for children born with cleft palates. Our youngest child has had two cleft palate surgeries to date with one more possibly on the horizon. While pain is inevitable, minimizing pain and frustration can be done with a little prep work and having things on hand. We have compiled a list of some of the things we found most helpful immediately after cleft palate surgery for our child as well as the month long recovery. We have also shared printables and how using a few simple American Sign Language signs were very helpful when our child could not talk. When children have oral surgery they are in a great deal of pain but also cannot communicate as they typically would. Helping a child express their discomfort can lead to providing relief faster. We hope the following is helpful for your little one as you prepare for cleft palate surgery.
Timeline for our Cleft Palate Surgery
While I cannot speak to other family’s journey, I hope this might give you a little help on what to expect. Please know your team may decide something is different for your child. I would personally prefer to be a little over prepared than under prepared. I read several articles and joined Facebook groups to help get an idea, but I wanted to share our experience too.
Day Before Cleft Palate Surgery
First we brought our child to have her super easy pre operation Covid-19 test. This test was a very simply cotton swab to the nose. While earlier Covid-19 tests needed to go way up past where is comfortable, this was just a tickle.
We treated our little one like a queen letting her decide all the places she wanted to eat. She had doughnuts, shakes, hamburgers, and other treats.
Our patient picked out her favorite puppy stuffed animal to take with her. Many doctors will allow little ones to bring in a comfort lovey with them. Roo’s Pound Puppy “Cookie” even got her own hospital bracelet the morning of surgery.
Take a very thorough shower. Make sure to do an extra good job at brushing teeth and flossing.
Depending on your surgery time the next day you will need to stop food at a certain time. After that you will only be allowed to have clear liquids (apple juice, water, sports drinks). Nothing will be allowed for a few hours before surgery. This was our experience.
Day of Cleft Palate Surgery
Check in for us was very quick. Our patient was given a hospital gown and no skid socks. One parent was allowed to wait with her up until they walked to the operating room. Our patient was able to watch TV and sometimes a social worker is able to bring children an iPad for while they wait as well. While every patient’s surgery is different, ours was just over three hours. Parents were given a card with a nurse just for us to ask questions and to give updates.
Once she was waking up I was able to come sit bedside. When she woke up we were offered pain medication and something to drink. Our patient had absolutely no interest in taking oral medication or having anything near her mouth. She was extremely sore and simply inconsolable. While many patients have no problem taking medication or small amounts of liquids, others will have more trouble. Our daughter took pain medication and fluids through an IV because she would throw up anything for nearly 2 days. While many children will only stay one night in the hospital, our daughter actually stayed two because of her inability to hold anything down. After her second night in the hospital she did find she liked Italian Icees and bowls of plain veggie broth. Our cleft palate repair patient was sent home after three full days and two nights in the hospital. We came home with antibiotics, two pain medications, and a special rinse for her mouth guard.
Things that were helpful after Cleft Palate Repair Surgery
I’m not going to lie, we bought a lot of stuff in preparation for Cleft Palate Surgery. We honestly did not use everything, but the following we were very happy to have on hand.
Oversized bibs Baby bibs are really too small. Having bibs on hand will help as kids will be feeding themselves with a syringe or dropping in food with a spoon. Things get messy!
Burp Cloth Burp cloths for the same reason you want bibs. Our daughter put them on her lap.
Super Soft Gripper socks Kids will be so uncomfortable after surgery. Ultra soft socks will be one nice source of comfort. Make sure the socks have no slip grippers. Kids have a hard time walking after palate surgery, especially if they had bone harvested from their hip. Gripper socks will help keep them from falling.
Small cold gel packs. They will need several at a time. Sometime kids will want a pack on their hip and two on their face at the same time. These are resuable. Kids can use them for years to come.
Wedge Pillow for sitting up in bed.
Disposable Face Masks – whether you are having surgery during a global pandemic (like we did) or not, wearing a mask will help keep germs away during a time when staying healthy is critical. I personally hope that masks becomes more common in certain places even when the pandemic is over. Masks for hospitals should really be a thing no matter what.
Toys to entertain kids while on bed rest
These will really help any kiddo who is on bed rest, not just cleft palate surgery. Our daughter was certain she would just want to watch TV. After a couple days she was a little bored and we were happy to have several items on hand. Kids will need small things to enjoy on a tray table in bed for the first couple weeks. While a good friend recommended several awesome toys, and friends joined forces to buy her a whole stash of fun toys, I am sharing her absolute favorites here.
I also suggest a big soft wheel wagon, like this one to take your patient out on strolls in the neighborhood. We were lucky enough to borrow one. I always suggest borrowing rather than buying something you will only use for a few weeks.
Liquid Diet Foods
Liquid diets are the pits. It was challenging for our daughter to feel full. She was sometimes bored. Every child has different dietary needs. Make sure to discuss with your child’s doctor what is best for your child. The following items were the bases of most of her meals during the 5 weeks she was on a complete liquid diet. Our daughter cannot have dairy so her options were even more limited. We found lots of great plant based yogurts and ice creams. We also purchased lots of shakes, purees, soups, and bone broth. Below are just a few that she endorses.
Bone Broth – we used this to thin everything from marinara sauce to mashed potatoes to beans.
PB Peanut Butter PowderRegular peanut butter really makes smoothies sticky which we tried to avoid at all cost. Our cleft palate repair patient LOVED having peanut butter without the stickiness.
Noka – Plant Based Protein Smoothies We purchased several different fruit smoothies as well as made some from scratch. Noka was by far her favorite. They are a bit pricier than some other smoothie options, but they are full of really great ingredients and she liked the variety.
Chocolate Protein Shake – Vegan – we tried several and this was her favorite
Baby Oatmeal – this is completely smooth but she loved it mixed with applesauce or other fruit
Prune Pouches – trust me, if you buy no other things – Buy these.
Surgery Printables for Kids
Find printables to help your kids express their feelings. For the first several days it will be very difficult for kids to speak. Kid’s enjoy Emojis and may find the following Emoji printable as a fun way to communicate their feelings. All of our kids signed as babies and we brought back signing for cleft palate repair surgery. We have also shared a printable with some of the most important American Sign Language signs we used during recovery. Feel free to print these out and use with your children!
EMOJI FEELINGS Printable
Sign Language Printable
Ask for Help
Don’t be too proud to ask for help. Many friends and family members will say ‘tell me how I can help’ and it is nice to have a wish list on hand to send them. We asked for Coffee and Gas gift cards for us as well as a list of suggested toys and liquid diet treats for our Cleft Palate surgery patient. She LOVED seeing the Amazon deliveries come in the week or so before surgery. We displayed the toys in a little pyramid in our front room. She would love to sit and hold the boxes and said “I can’t wait til I can open this after my surgery!”, it really eased the dread leading up to surgery day. You can also ask a good friend to start a “Meal Train” for the other members of your family. The first couple weeks home you will be especially tired and this is an easy thing those who live close can participate in. Meal Train is set up so folks can also donate a Grub Hub gift card if they live far away or don’t love to cook but still want to help make your journey go a little smoother.
We are a couple weeks out from cleft palate surgery and she is already feeling so much better. While we know she has to continue to be careful, I hope that those who are going into surgery or just coming out of surgery will be encouraged to know that feeling better is just around the corner.