At the end of November 2017, Mercy had her cleft palate repair surgery. I’ve been meaning to update ever since then, but with the holidays and a few other bumps in the road, I was not able to get to it until now.
You can see the video (and even hear Mercy talk!) HERE!
First of all, if you are unfamiliar with Mercy’s Story, you can find it HERE. Mercy was diagnosed with Pierre Robin Sequence at birth, meaning her jaw was small and she had a cleft palate, causing her tongue to obstruct her airway. We spent 6 weeks in NICU at Children’s Mercy Hospital in Kansas City while her jaw was pushed forward via distractors (you can read more about that HERE), and while she learned to eat on her own without the feeding tube (NG tube).
A few months later, Mercy was also diagnosed with Stickler Syndrome Type 1 – a rare disease that causes a lack of collagen in the body. Because of SS, Mercy is very near-sighted (-15) and will have to deal with a few other issues as she grows up, but all in all, she is a VERY healthy, VERY smart little girl!
As I said in this video, we started preparing for her cleft palate repair back in August, but didn’t actual go in for the repair until the end of November when she was 13 months old. Her plastic surgeon likes to do the repair around the 1 year mark because he feels like it holds better and has less chance of needing to be done again. It also heals before baby is doing too much talking and has to unlearn poor speech patterns. Mercy’s cleft was mostly soft palate and very little hard palate. To repair her cleft, the surgeon pulled the tissue from either side of her mouth to the center and stitched it shut. So, her entire mouth was raw and painful.
Thankfully, through the amazing PRS community on Facebook, I understood that the first 24 hours after her repair were going to be difficult; however, I’m not sure anything can truly prepare you for how difficult.
When Mercy came out of surgery, she was in and out of consciousness and very unhappy. She was drooling everywhere and very bloody. She had gauze packed in the back of her mouth (which eventually fell out right before we left the hospital.)
The first night was really rough, but thankfully, I had a nurse who was intent on making sure we stayed on top of Mercy’s meds, and she even gave me a break that night so I could stretch my legs and then lie down for a bit.
I am also really glad I picked up this little gadget in the gift shop before the surgery…
This is a phone holder that allowed me to binge watch Netflix while I held Mercy (just being honest here). I didn’t have my hands free for hours on end, so being able to have something to do made it less stressful. (I own the Omar Owl version of this phone holder.)
When Mercy came out of surgery, she had no-no’s on her arms to keep her from putting her fingers in her mouth.
Our hospital has high quality no-no’s, but some hospitals do not. It is a good idea to have a second pair if you can find them.
Another thing I am so glad I brought with me were Baby Legs (aka baby leg warmers). In the hospital, I used them to keep Mercy’s legs warm under her hospital gown, and also to help keep her restraints on.
By the way, you can get 5 pair for free (just pay shipping) at BabyLeggings.com if you use my code: RAISINGARROWS9
You might notice Mercy’s “designer” hospital gown – I was blessed to receive several of these from a lady on a local Cleft Palate Facebook group. Mercy got tons of compliments on her fashion sense while in the hospital!
For the first 24 hours, we didn’t worry too much about her food and water intake. Typically after a cleft palate repair, babies can only have liquids for a couple of weeks, then mushy foods, and finally be taken off all restrictions between 4-6 weeks. (more on that in a second…) We had a really hard time finding something she was willing to even try to drink. I was getting desperate! And then we tried my oldest daughter’s mango smoothie – cold, smooth, yummy – and it won Mercy over! She could only take a sip or two at a time, but it was enough to give me hope! We tried other things here and there, but in the end, it was the mango smoothie that bought our ticket home. (The doctor wanted 2 things from her before she headed home – pain under control and proof she was willing to eat.)
I knew Mercy was ready to go home when she started trying to escape her hospital room every chance she got! There was a playroom down the hall, and she knew exactly how to get there!
Thankfully, the nurses were more than willing to unhook her leads (see them dangling in the photo?) and let her run!
One last thing I’m glad I brought were bibs! I preferred the terry cloth bibs, but whatever you choose, they need to have good coverage.
And something else I want to note (since by now you’ve realized I’m not just writing this as an update, but also as a help to other moms in a similar place), is that I thought after a week or two, Mercy’s incessant drooling would go away. She’s been a drooly little gal her whole little life, and I thought the repair would be a quick fix. But, it was 6 weeks before the drooling stopped. But when it stopped, it stopped suddenly. As in, one morning we woke up and drooling bibs were no longer needed!
I also noticed Mercy’s voice changed, and she began to try out new sounds almost right away! It was really exciting, but also a little sad. My little clefty was gone, and in her place was a child who suddenly had a “normal” mouth. It was a giant mountain we had climbed together over the past 13 months, and there was definitely nostalgia as we moved forward.
As far as recovery, the biggest stressor was feeding her and medicating her (more on that in a second…). Yes, I had to work to the keep the no-no’s on her (especially at night!), but for the most part, she didn’t mind those. Her big sister even joined in the “fun” of having Frankenstein Arms (my oldest son said he kept thinking Mercy had surgery on her arms not her mouth because of those big old restraints!):
But, going from having a child who could pick up food and feed herself to needing to micromanage everything she ate and feed it to her was very time consuming and required a lot of thought. HOWEVER, it didn’t require as much thought as the hospital nutritionist scared me into believing it would take.
The nutritionist gave us special cups that I was supposed to feed Mercy with, and instructions to puree everything. Well, I quickly realized that buying baby food already pureed was WAY better for my sanity. I also learned that our surgeon didn’t require these little notched out cups, but was fine with a 360° cup like this one:
or a low-profile cup like this one:
These made my life SO much easier!
I also did something not recommended by the surgeon, but mentioned by other cleft moms as “ok” if you were careful…using a large spoon turned sideways to feed baby. And that’s what I did. And here’s your disclaimer…I am not a medical professional, and I am not encouraging you to go against your surgeon’s advice. Just so we’re clear!
Oh, and about those meds…Mercy had opioids and acetaminophen in the hospital. Giving her meds was a NIGHTMARE! Mercy has always been a fighter. It’s how she’s survived all that’s been done to her. Every single time we gave her meds, it took two of us to hold her and get them down her. You have to remember, this little girl has had people messing with her mouth all her life…and her mouth hurt post-surgery…and Oxy is gross…and Tylenol dosages are huge when you just want to be left alone.
She continued to take the opioids for about 4 days after coming home, and then just the acetaminophen for the next week or so. She didn’t need anything for pain after that. I think I gave her one or two doses around the 2 weeks mark because I couldn’t tell if she was hurting or just fussy.
One last tip I want to mention was shared with me by our surgeon’s nurse who had her own clefty. If baby has surgery in the winter, put the no-no’s over your child’s long-sleeve shirt, roll the sleeve up over the no-no and then use hospital tape to tape around the sleeve. This helped a lot (you can see an example in the photo above)!
We are now almost 3 months post-op and it’s as if nothing ever happened. Mercy is happy and healthy and has healed up quite nicely! She will have a follow-up appointment this coming summer to check the repair again and also assess her speech post-op.