Cleft Palate Repair Recovery Tips

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Before Josie’s palate repair surgery, I was bracing myself for a few miserable, sleepless weeks of recovery. But luckily, Josie bounced back in no time. Palate repair recovery was definitely still a difficult and exhausting process, but it wasn’t as terrible as I had expected, and it was so worth it in the end.

A lot of people have questions about recovery and what to expect, so I wanted to detail the steps I took to ensure that everything went as smoothly as possible. Hopefully it will be helpful to other cleft parents! (You can read more about how surgery and recovery went here.)

Follow Doctor’s Orders!

The most important thing I did after Josie’s surgery was to follow her doctor’s orders! This meant Josie had to wear arm restraints and eat nothing but purees and very soft foods for SIX weeks. A lot of parents take the arm restraints off early because kids tend to hate them for obvious reasons. However, I wasn’t taking any chances.

If Josie stuck her hand/a toy in her mouth or ate a hard, crunchy food, it could have caused a fistula (an opening in the surgery site) or another complication. For that reason I left the restraints on for as long as possible! And honestly they didn’t bother Josie that much after the first couple days. This was a huge relief because, prior to surgery, Josie always settled herself to sleep by sucking on her hands. I was worried that she wouldn’t sleep a wink with those arm restraints on, but babies are SO adaptable – unlike us adults!

Stock Up On Baby Food…

Before surgery, our craniofacial team told us that Josie would only be allowed to eat purees and soft foods for several weeks. I stocked up on lots of nutritious yummy baby food that I knew Josie liked. This included lots of meat purees to ensure she was eating enough protein!

I also bought pudding cups, flavored yogurt, jello, and instant mashed potatoes. These are treats that I don’t typically serve to Josie, so I was hoping she would eat more of them since they were “special.” She ended up eating tons of chocolate pudding as her first food after surgery, even though she was in a lot of pain at the time. Nobody can resist chocolate!

A Variety Of Drinks…

We also stocked up on different flavors of Pedialyte and ready-to-feed formula before surgery. After a baby comes out of surgery, they’re usually very hungry and thirsty because they haven’t eaten since the previous day. However, because their mouth hurts, they often don’t want to eat food and even drinking liquids can be difficult.

I wanted to be sure to have lots of yummy drinks on hand when Josie got out of surgery so that she could sip on something she liked. Since she doesn’t get juice very often, having different flavors of Pedialyte was helpful because it was like a special treat. Josie also drank a lot of ready-to-feed formula. It seemed like the familiar flavor of her formula helped to comfort her while she was in pain.

…And Yummy Soft Foods

I mentioned this earlier but it’s worth talking about again. When Josie went to the recovery room after her palate repair surgery, she hadn’t had anything to eat or drink for almost 24 hours. She was majorly upset due to pain and disorientation, but I also think a lot of her crankiness was from just plain old hunger.

In other words – she was HANGRY!

And since her surgery caused the roof of her mouth to hurt, she didn’t want to put anything in her mouth, so she just got hungrier and hungrier and crankier and crankier. It was a vicious cycle!

After she finally got some food in her stomach the morning after surgery, Josie’s whole attitude changed. She started dancing and playing with toys, instead of endlessly crying as she had been the previous night. It was such a relief.

And what food, you ask, did she finally decide to eat? CHOCOLATE PUDDING. I packed a bunch of chocolate and vanilla pudding cups in our hospital bag so we’d have a tasty, soft treat on hand. It was our biggest lifesaver. Josie couldn’t be discharged until her doctor was sure she was eating and drinking, so the pudding was actually our ticket home! Once Josie stopped being so hangry and calmed down a bit, everything got WAY easier. Thank goodness!

Set Alarms For Medications

A few years ago I had spinal surgery to repair a herniated disc, and the number one advice that I was given before surgery was to STAY ON TOP OF MY PAIN MEDS. It’s not a good idea to ignore pain meds until you need them because it makes recovery so much harder if you’re hurting constantly.

I applied this idea to Josie’s recovery by setting alarms for each of her pain meds and antibiotics. It was like she was a newborn again! I had to give her medicine every 2-3 hours around the clock for the first few days, which meant waking myself up at least 3 times a night. But it was so worth it because Josie slept way better and was able to heal quickly because of it. It also helped me to keep track of her antibiotics so that I never forgot a dose, even if I was delirious from sleep deprivation!

Buy Extra Tylenol And Motrin

Josie’s doctor prescribed a narcotic painkiller and ibuprofen after her surgery. After the heavy duty narcotic was gone (within the first few days), I replaced it with Tylenol. I alternated Tylenol and Motrin for about a week until Josie’s discomfort seemed to be pretty much gone. I made sure to have extra bottles of these medicines on hand before surgery and they really came in handy. 

Athletic Tape

This is a tip that I didn’t actually end up using, but it could definitely be useful for other kids. This was recommended to me by Jenna Forbess of the awesome Ava June and Mommy Too blog. (Go check out her blog! It’s an incredible PRS and cleft palate resource!)

Jenna’s tip was to wrap athletic tape around Josie’s arm restraints if she figured out how to get them off! Josie surprisingly left her arm restraints alone and didn’t seem bothered by them. But for kids who are desperate to be free, athletic tape is an awesome hack.

Long Sleeves

Another tip from Jenna! Dress baby in long sleeves underneath the arm restraints to prevent itching, rubbing, and discomfort. So simple but a genius way to make baby more comfortable.

Pack Away Small Toys

Another pro tip from Jenna was to pack away any small hard toys that Josie could potentially put in her mouth and injure the surgery site. She always wore her arm restraints, but it gave me peace of mind to know that there was nothing around that she could use to cause major damage if she ever got the arm restraints off.

Plastic Spoons

This is kind of obvious but don’t forget to use soft spoons for feeding. No pointy metal forks! We use maroon spoons with Josie and they work wonderfully for her.

Alternatives To The Sippy Cup

Since Josie’s sippy cup had a small spout that went into her mouth, she refused to drink from it for the first day or two. She didn’t want ANYTHING in her mouth. Luckily I had packed some open cups (we use Reflo cups) which she was more willing to drink from. If all else fails, some moms also use syringes to squirt liquid in their baby’s mouth to keep them hydrated.

Extra Bibs And Clothes

Josie had quite a bit of blood and drool coming out of her nose and mouth after surgery. I made sure to pack lots of extra bibs for her and shirts for me in the hospital bag so that we could both stay clean and dry.

Lots Of Distractions And Cuddles

When Josie was at her crankiest due to pain, discomfort, hunger, etc. the best thing we did was to distract her. We usually try to avoid screens with Josie, but in the hospital immediately following surgery, we gave her the iPad and let her watch her favorite show Little Baby Bum on repeat. It really helped to calm her down and keep her mind off the pain. Later on during recovery, if she was fussy from discomfort or got frustrated with her arm restraints, we would play fun games, take her outside on walks, sing songs, watch movies, and do lots of cuddling. Anything to keep her distracted during the toughest times of recovery after palate repair.

The recovery period after palate repair surgery can be really scary and tiring, especially if your baby is very uncomfortable or refusing to eat/drink. Just remember that your little one WILL eat/drink eventually, and that in a few weeks everything will be back to normal – better yet, you’ll be experiencing a NEW normal in which your baby no longer has to struggle with a cleft palate! It’s tough but so worth it!

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