If you’re preparing for your child’s cleft palate repair surgery, I know how overwhelming it can feel. Our daughter, Emma Lynne, was born with a cleft palate, and she had her surgery the day after she turned 9 months old. If you’d like to read about our cleft palate journey before surgery, I shared the full story in this post here.

If you’ve found this post, chances are you’re in the same position. In this blog post, I share our experience of surgery day, what recovery in the hospital was like, and a detailed cleft palate surgery hospital packing list that helped us feel prepared.

Surgery Day
Recovery in the hospital
What to pack
Best tips for cleft palate repair surgery

The Day of Cleft Palate Surgery

3:30-5:30am: Our surgery day started early. Our call time for check in at Children’s Dallas was 5:30am, which meant we were up getting ready around 3:30am and had an hour drive to the hospital.

The night before surgery EL decided not to sleep. It was like she knew something was happening! This is very odd for her, because she has been sleeping through the night since 8 weeks old. We both slept maybe 2-3 hours the night before so we were EXTRA tired. 

We had about an hour drive to the hospital, found a Starbucks that opened at 4:30am and then arrived by 5:15am to park and walk from the parking garage across the skybridge to the main check in area. 

At check in we got our visitor badges and walked through metal detectors. Then we went to another check in area where we got checked in and directions to the surgery floor.

This was the longest part, as it seemed everyone having surgery that day arrived at the same time. We all waited in a line as the one check in lady told everyone the same thing. This took at least 30 minutes. 

After it was finally our turn, we then sat in the waiting area for Emma Lynne’s name to be called.

Pre-Op: 6:00am – 7:45am
A little after 6:00am we got in our pre-op room. We met with the anesthesiologist and surgeon, who reassured us and answered last-minute questions. Our daughter changed into a tiny hospital gown, and we gave her lots of snuggles before it was time to go back. They also gave her some “silly juice” to calm her down which made her a little loopy. 

7:50am – We gave EL hugs and kisses and the nurses took her back for surgery.

During Surgery: 8:00am – 11:45am ish
The waiting felt SO long, and the hospital staff gave us only 2 updates via text the entire time. Her surgery lasted about 4 hours. We were told it would be 3 hours, so I was freaking out a bit towards the end since there had been no updates.

There was a TV in the waiting area with the status & room of each child. They give you a number at check in so you can see at what stage your child is in.

During surgery, we went to the main lobby and got a second Starbucks because we were SO tired! Fun fact – the Starbucks at Children’s Dallas is open 24/7! We brought our iPad and watched The Summer I Turned Pretty, took a walk outside and hung out in the courtyard, ate some snacks, explored the gift shop, walked around, and then headed back up to the waiting room towards the end. 

I was too nervous to eat lunch.

At 11:46am we got a text to check in with the surgery waiting room and meet the surgeon. We had a debrief about the surgery, then had to wait a little longer to see her.

Post-Op: 12:15pm – 1:00pm
When we were finally reunited, she was groggy, swollen, and upset which is all normal. I was not prepared for how bad she was going to look 🙁 I almost started crying but then I was like – no I’m the mom, I need to be strong and not freak out! The nurses monitored her while I held her and we hung out there for about 30 minutes until we got taken to our recovery room.

What Recovery in the Hospital Was Like

We got into our recovery room between 1:00-1:30pm I would guess. We were fortunate to have the same day and night nurses the entire time! Our baby was hooked up to a lot of cords which made it difficult for her (and us) to get comfortable. She mostly just was in a diaper the whole time and the baby hospital gown until the last day when they were able to take her off fluids and off the pulse ox, I put her in footless jammies. 

Our room had a recliner chair that we stayed in most of the time, and a couch/bed. My husband and I both stayed overnight for 2 nights. My parents came in town and watched our older son.

There was a crib in the middle of the room, but EL only wanted to be held. She slept a lot after surgery and just wanted snuggles.  By day 3 she was able to play in the crib and was feeling a little better.

Every child responds differently, but here’s what we experienced:

Feeding after surgery: This is going to be it’s own section because it was the most difficult part and what kept us in the hospital!

We thought that our daughter was not going to be allowed to use bottles after surgery, but they told us she could. So we tried giving her the bottles she was used to and some from the hospital, but she refused to eat, which landed us an extra night’s stay in the hospital. 

For reference, she normally eats around 30oz a day at home. The day of surgery she was able to drink 3-4oz while she was still numb after surgery. But the following day she only ate 0.5oz 🙁 She was refusing all food. 

I wish I had done some more research into this prior, but she’s never had an issue feeding so I didn’t think of it! What I’ve read helps kids is pouches or ice cream. I didn’t try either in the hospital, but we did order baby food applesauce and baby food pear from the hospital room service and she ate a little of that by spoon. The nurses were desperate and tried syringe feeding but even that didn’t go over too well. By day 3 she finally started eating again and 7oz got us discharged. 

So – I would suggest getting some pouches like the Go Go Squeez of applesauce or whatever other flavors they might like and bring them to the hospital with you! 

The biggest thing is patience. You can’t force them to eat, and they will turn a corner on their own time. It was very frustrating because we wanted so badly to go home and everyone had told us it would just be a one night stay. But I would definitely pack and prepare for more just in case! 

When she finally did eat, it was on her boppy in the crib with her bottle from home, the way she eats at home. I’m not sure if she was just so hungry she finally gave in or if she was over us holding her and felt comfortable in the crib but we tried everything!

Pain management: The nurses stayed on top of her pain medicine schedule, which was tylenol (or the stronger tylenol), antibiotics and ear drops. 

Sleeping: EL slept in our arms the whole time. She slept a lot more than normal, but was also interrupted when nurses would come in to give meds or check vitals. Overnight, my husband and I took 3 hour shifts – one of us would sit in the recliner chair and hold her and the other would sleep on the couch bed then we switched. 

What to Pack for Cleft Palate Surgery Hospital Stay

Packing smart made the stay so much easier. I always use these packing cubes. Everyone in our family has their own color. Here’s what I recommend bringing:

For Your Baby:

• Favorite blanket or lovey (comfort item)
• Zip pajamas that the feet can be out like these
• Bandana bibs
• Burp cloths for over your shoulder – or you can ask the hospital 
• Bottles from home
• Formula from home*
• Extra bibs or burp cloths (there will be drool)
• Toys
• Baby Bum Brush
• Aquaphor
• Diaper rash cream
• Boogie wipes

Our hospital provided Huggies brand diapers and wipes. If you prefer a different brand, bring your own.
Our hospital also provided Similac formula. They did not have the exact kind we use, but I had brought our own from home. She was refusing all formula so we were just wasting it. She ended up drinking the hospital’s Similac 360 on the third day. But if you have a specific brand you use, bring that.

For Parents:

• Pillows and blankets from home (enough for each person)
• Comfortable clothes and multiple sweatshirts (hospitals are cold)
• Socks
• Dark colored shirts – there will be blood and your baby will rub their face on you
• Toiletries/deodorant/hairbrush
• Travel mirror
• Snacks, water bottle, Liquid IV
• Phone charger – I brought my regular magnetic one and a portable one
• A folder to keep all the papers in
• iPad
• Book
• Toothbrush

Other:

• Hatch Go – White noise machine 
• Small nightlight – Here is the one we brought
• Boppy pillow
• Slippers for around the room
• Flip flops/slip on shoes for trips down the hall or to the lobby
• Surgery companion doll from Stitches by Charlotte

Things I brought but did not use

• No-No’s/arm restraints (linked above) – they did not use these with EL, but I had ordered some off Amazon that were supposedly more comfortable. Maybe these are used more with kids with both a cleft lip and palate.
• Snap pajamas – I had read that snaps were better with the wires, but she was in a diaper and hospital gown most of the time. 
• We brought our Roku but didn’t end up using it because the TV was so high we couldn’t reach it! But my husband was able to log in to something to watch football and movies directly from the TV.

Other thoughts & tips

Take advantage of the child life play rooms if your hospital has them! 

At Children’s Dallas you can order guest meals delivered to your room for $8 each. The food was nothing to write home about, but having it delivered to the room was nice.

There was a nourishment room on our floor with a fridge, microwave, coffee and water machine, extra silverware, popsicles, and some crackers

We had a bathroom with a shower in our room which was nice to rinse off. I brought my travel toiletry bag with body wash, shampoo, razor, etc. Ask the nurses for towels & washcloths. 

If you’re not in a Facebook support group, join one! I am in a local one for moms in DFW and a larger general group, and was able to ask advice while I was in the hospital. Be sure to search your area + cleft on Facebook to see if your area has one. I’ll link the ones I’m in below:
DFW Cleft Family Support Facebook group
Cleft Mom Support Facebook group

More tips for cleft palate repair surgery

1. Quarantine before – I quarantined both kids 1-2 weeks prior to surgery. They are not able to do the surgery if a child has a cold or cough. I didn’t want to chance anything so I did not take my kids to the gym daycare, church Sunday school, or any play dates for the 2 weeks leading up to surgery.
   
2. Take breaks – In the hospital, tag-team with your partner for sleep, breaks, etc. It can get frustrating and stressful in the hospital. Get out and take a walk or get some fresh air outside.
   
3. Prepare for emotions – It’s hard seeing your child in pain, but recovery happens surprisingly quickly. By day 4-5 EL was doing a lot better. A week post-op she was basically back to her normal self, aside from her voice sounding a bit hoarse. I think she was over being in the hospital and was SO happy when we got home!
   
4. Plan for a quiet week at home afterward – We were fortunate to have my parents come in town to stay and help. One of the biggest helps was my mom offering to take EL overnight when we got home from the hospital. We were SO exhausted, an uninterrupted night’s sleep was the best gift! We were zombies!
   We obviously don’t want her catching a cold or anything else, so we are trying our best to keep her home as much as possible after surgery. This is a bit difficult with having an older kiddo who is going back to school and in swim lessons and other commitments, but we are hanging out a home as much as possible the weeks after surgery.
   
5. Share your story– Tell people what is going on. I posted a blog post and posted on social media and the outpouring of love and support has been amazing! We have had so many people bring us meals, send venmo for coffee, send an encouraging text message, donate money for food, send DoorDash gift cards, etc. None of that would have happened if we kept it to ourselves and didn’t let people know what was going on and what we needed. A lot of people want to help, but won’t know if you don’t tell them!

Final Thoughts

If your child is having cleft palate or cleft lip and palate repair surgery, know that you will get through this. The first few days are very tough, but kids are resilient and brave! I’d say EL was feeling back to herself a week or two after. Once we got home, she was much more comfortable and eating her usual amounts within a few days or a week of being home. Surprisingly, she was sleeping through the night almost immediately, which we are very thankful for! I hope our experience helps you feel more prepared and encouraged.

If you have any specific questions I did not cover in this blog post, feel free to email me at hello@alyssaroloff.com