Our Cleft Lip and Palate Journey- The Lip Repair Surgery

When we first found out our baby would have a cleft, I had no idea what we were in for. I stayed pretty calm about it but what I really wanted to know was when the cleft could be fixed. Surely, they could just whisk him away after he was born and fix it right then right? We quickly found out that no- that wasn’t the case. It wouldn’t be a quick fix and there would be a lot to learn. We have been so fortunate with our cleft team of doctors and nurses and with their help we made it through. It wasn’t easy and it felt like a very slow process, but after 10 weeks of the NAM and then a lip adhesion surgery, we were ready for the full cleft lip repair surgery. Today I’m sharing that process and next week I’ll share about our palate repair surgery.

Our doctor waited until six months to schedule our full lip repair surgery. That gave Rush time to expand his palate and close his cleft as much as possible with the NAM. He also got bigger, put on some weight and was more physically ready for the surgery. After our lip adhesion surgery had failed (it came apart), I was nervous about this surgery. But I also felt a little more comfortable because we had been through the surgery process before.

The night before the surgery I made sure to take some before photos. I wanted to have a good photo of his cleft before they fixed his lip and I’m so glad I did. We were able to replicate the same photo after surgery and it’s so cool to see them together. As you can see, he was so cute and happy before the surgery and I just did my best not to worry.

Our hospital scheduled Rush as the first surgery of the day so that he didn’t have to go any longer then was needed without food. We were instructed to stop food and milk at a certain point and after that I just gave him Pedialyte until our appointment time. He really did well and didn’t seem to mind getting a little bit hungry because there were so many interesting things to look at throughout the hospital.

As far as packing goes- I knew I might be at the hospital for a day or two, so I packed my overnight bag and extra clothes for Rush to go home in. I took formula and bottles with us and I’m so glad I did. They had premixed formula at the hospital, but Rush did not like it. He preferred what he was used to from home when he started to eat again. The hospital rooms that we have been in have always had fridges so it’s possible to bring breast milk too. (I stopped pumping at 6 weeks, so we were only on formula.)

BABY BLANKET // BRACELET

We arrived bright and early with our little Rush man. They got us in pretty quickly and took all of his vitals. He was in such a great mood and I felt guilty that he didn’t know what was coming next. He was so cheerful and friendly to all of the nurses and doctors.

Once they got him all charted and checked in, they took him back. Our doctor was really great about telling us as much as he could, and I felt okay as they walked him back. I sent his favorite blanket with him so he would have it in the recovery room. Soren and I set off for the waiting room and we waited. We got some food and brought work to keep our minds off the worry.

There was another set of parents in the waiting room that looked extremely stressed. We found out that their little one was getting ear tubes and boy, were they nervous. I was thankful to feel a little more calm because this wasn’t our first rodeo and I knew we had so many people praying for us.

Surgery really didn’t take that long. It was only a few hours and Soren and I passed the time by talking and getting some work done. I was a little anxious, but it wasn’t too bad. I knew Rush was in good hands and that things would work out okay.

They called down to the waiting room to tell us when they were done and how Rush was doing. Thankfully he did great and they came to get us about 20 minutes later. We headed up to recovery and met them in the hallway. It was such an amazing little transformation to see. Our baby had a lip!

When they were done the doctor came out to tell us how it went, and he only had good news. It was amazing to see his little nose and lip. His lip looked so good, but it also looked totally normal to me. This was how he was supposed to look from the start! It was so good to see our sweet boy and to have the anesthesia behind us.

BABY BLANKET

That being said- the recovery from the anesthesia was rough. Rush slept on and off for about 12 hours, but he was not happy. It was so hard to see him so uncomfortable and out of it. We kept the pain meds going but it was really the discomfort of the anesthesia that was the hardest at first.

Our doctor is very particular about where his patients go to recover, but the days that we were in the hospital his preferred area was full. We were sent to another wing and I really wish that hadn’t been the case. The nurses on that wing were not as experienced with lip repairs and weren’t as empathetic as our normal nurses. The night nurse decided to switch Rush to only Tylenol rather than keeping his Oxy or other drugs going. I didn’t speak up thinking it might be okay. It wasn’t. It was a ROUGH night and I finally told them he needed something stronger. Tylenol was not cutting it!

Soren stayed with me for most of the first day, but he went home in the evening to take care of the other boys. I was on my own which was harder than I thought. I wish I had had someone else come and hang out with me. The hospital is definitely a lonely place!

WOMEN’S PANTS // WOMEN’S TEE // EARRINGS // BABY PANTS // BABY SHOES

The anesthesia fog seemed to wear off about 12 hours after surgery and Rush clearly felt more like himself then. He wasn’t nearly so fussy although he hated the IV and other wires. They keep an IV going and a pulse monitor for at least a day. They want to make sure babies stay hydrated until they are willing to eat. Rush actually hated the IV so much that he kicked it out sometime around 5 am. They placed another one- which was annoying, and he hated it even more!

Over the 24 hours after surgery we offered Rush Pedialyte and formula with a little syringe. The hospital provided formula and the syringe, but like I said, Rush didn’t like their formula. Early the next morning after surgery I was finally able to get Rush to take some formula and he was able to use a bottle too. We just had to put the nipple on the side of his mouth opposite his cleft.

Our doctor came to check on us at around 10 am and gave us the clearance to go home. We were given prescriptions to take home for pain meds and antibiotics with instructions for keeping his lip taped. I was so glad to get out of there and so was Rush!

BABY PANTS // BABY SHOES

We had a one-week post-op appointment scheduled and I was so nervous that healing wouldn’t go well. But, thankfully it did! We didn’t have any problems keeping it clean, taped and looking good. Rush continued to eat and the stitches dissolved in about two weeks. He did have to wear arm guards for about three weeks to keep him from touching his mouth, but he did a great job getting used to them.
Our instructions post-op were to massage his scar several times a day and to use scar cream. We kept that up for a little bit, but not nearly as long as they said to. Rush HATED having his scar massaged and I noticed he didn’t want anything coming close to his mouth because of it. That made it hard to feed him baby food because he was always trying to get away from the spoon. As soon as we stopped massaging his scar he started to eat much better from a spoon, and it worked out okay for us. Rush’s scar was pretty minimal and the more he has grown and used his mouth for eating and making sounds, the more the scar has worked itself out.
It was such a relief to have that surgery behind us because it meant we got to have a pretty normal life afterwards. Rush had very few doctor appointments and he could eat and grow like a normal baby. His palate was still open so he did have food coming out his nose often, but otherwise we really enjoyed the break.
His next surgery would be for his cleft palate and they scheduled that for 14 months. I’ll share that experience next and would be happy to answer any questions that you might have about our lip repair journey. It definitely wasn’t easy, but it was doable and I’m so proud of how it all went. Rush is a rock star and we have all become better because of our experience with a cleft lip and a cleft palate. Feel free to leave questions or comments below!

Jacquelyn says
December 10, 2020 at 7:57 am
Thank you for sharing your story!!!
My husband and I are Expecting our first baby and we found out that he will have a cleft lip and palette as well. It was extremely difficult to hear at first but we have made peace with it now and are just anxiously awaiting his arrival in April 2021.
Reading your journey has really helped prepare me for some of the challenges we will face. Even though I know Each case is different and we still don’t know the severity of things; I am Hopeful.
I was curious as to the first lip surgery you said that did not work?
Was that for the lip and nose surgery or something he needed first to prepare for the final lip and nose surgery?
Thanks in advance
Reply

Our Cleft Lip and Palate Journey – The Lip Adhesion Surgery

If you’ve been following along with our journey through the last year, you know that our youngest son was born with a cleft lip and palate. I’ve been trying to document much of what we have gone through and our experience through it all. My hope is that our journey will help others, maybe you, with a similar journey someday.
You can catch up with our journey here, here, and here. Today I’m sharing an update on our first surgery with a cleft lip and palate.

Since birth we have had weekly appointments with our cleft team and Rush has been fitting with a NAM and lots of tape. It’s been quite the adventure. We knew that after 10-12 weeks of the NAM we would be reassessing Rush’s progress and start making plans for surgeries. In mid-April we came to that point.
After about ten weeks of religious taping and using the NAM, we had an appointment with both our orthodontist and our plastic surgeon. The surgeon came to check in on the progress we had made with the NAM and to make future plans. After examining him, our doctor decided to schedule Rush’s first surgery for the next week. We knew a lip adhesion surgery was a possibility and at about 3.5 months they determined that it was the best next step.
A lip adhesion surgery is basically an in-between step to the full surgery. In Rush’s case they were planning to stitch part of his lip together inside his nose and a little farther down. The idea being that tacking the lips together will help the face and cleft continue to move in a closed-down direction and slowly progress towards a symmetrical and uniform look.
We found out we would be having the surgery just a week before they scheduled it, which was a blessing and curse. It was nice to only have a week to stress about it, but we also only had a week to mentally prepare.

The hospital scheduled us for the first surgery of the morning since Rush was the youngest patient of the day and they were trying to keep his fasting time brief. The hospital called us the day before we were due in to tell us our pre-op instructions. Rush was allowed to drink formula and milk until 2 am and then only clear fluids like Pedialyte until 5 am. I was a little nervous to give Rush Pedialyte, but he loved it. I mixed the clear, non-flavored variety with the mixed fruit flavor and he drank a good 4 ounces before his cut-off.

I knew I would be staying one night with Rush so I packed an overnight bag for us, including our own bottles and formula. I wasn’t sure if they would have his typical formula and I ended up being glad we brought our own.

We arrived at the hospital at around 7:30 and got him all checked in. Despite not being able to eat much during the night he was in a good mood. We distracted him by playing and he really didn’t fuss. I had been very worried about him having to fast, but it ended up being no big deal.

We met with the anesthesiologist and our doctor beforehand to sign paperwork and get an overview of how the surgery should go. Basically, they would be putting Rush to sleep and then surgery was supposed to take about 45 minutes. Because this wasn’t the full surgery, the main goal was to put a big mass of stitches in to hold the lip sections together for the next two months. Thankfully, one of our friends from church was the anesthesiologist on duty. We were able to send Rush back in his arms which felt a tiny bit better than just sending him with a stranger.

They took Rush back and sent us to the waiting room. It really didn’t take long. We waited there for under an hour before the doctor came back to let us know how things had gone. I felt calm during the entire surgery and I’m thankful for that. The report came back great and they took us back to the recovery room.

It was strange to see our little guy laying flat on the bed asleep, in a hospital gown and hooked up to a bunch of monitors. I guess it’s because he is always swaddled when he sleeps, but he definitely looked bigger and different laying flat on his back with his arms all sprawled out. We stayed with him in the recovery room for probably 45 minutes while he kind of woke up and they monitored him. We found out from the nurse that he had stopped breathing for a few seconds between the OR and recovery. Thankfully, it wasn’t long and he was fine, but apparently it was a bit of a panic while it happened. I’m glad I wasn’t there for that part!

They rolled Rush’s bed to his room in the hospital for the remainder of his stay. I should say Soren was with Rush and I all morning and I’m so glad for that. We had friends help us with the other kids and Soren stayed at the hospital for most of the surgery day. He was able to get me lunch and I stayed by Rush’s side for almost the entire day.

Waking up from anesthesia is hard for everyone, but everyone responds differently to it. I was most worried about how Rush would do and he didn’t do great. For the first 12 hours post-surgery he cried and cried and cried when he wasn’t sleeping. The nurses we had were wonderful and helped so much. We ended up giving Rush more of the prescription pain meds rather than sticking to just Tylenol post-surgery. He was able to sleep better and by the evening he was waking up feeling a little more like himself.

We were able to go home the next morning as long as he was eating and the doctor gave the okay. We used a syringe to feed him Pedialyte again post-surgery and we tried to give him the pre-mixed formula, but he wouldn’t take it. It was the same brand as our everyday powder, but he didn’t like the liquid version. Once we switched to our powder he started eating at some point in the night.

As far as recovery went, we were instructed to keep him eating but to keep the bottle nipple away from the stitches. We had to move it to the corner of his mouth. He also had to wear arm restraints called “no-no”s for a few weeks. We kept them on much of the time, but when we were holding him or watching him closely we took them off.

We had a post-op appointment about a week after surgery and things looked good. Rush’s lip did bleed twice after surgery and both times I texted our doctor freaking out. One thing that he reminded me of is that “recovery isn’t linear.” There will be ups and downs throughout the whole process and we will handle them as they come.

Overall the surgery went well, but unfortunately, we fell in the 10% of lip adhesions that actually come undone. Rush’s stitches came apart about six weeks after the surgery. I was cleaning it out and changing his tape and it had popped apart. The fishing line stitches were still visible on the one side of his lip, but the other had come clean apart. No blood, no trauma, and no crying. It just popped apart. So we called our doctor again and he decided to move our final lip/nose surgery up. It had been scheduled for mid-August and we moved it up to the beginning of August.

Until then we have just been taping his lip and enjoying having a break from so many doctor appointments! The NAM wouldn’t fit in his mouth or nose after the lip adhesion surgery and so the team decided to leave it out. They also didn’t fit us for a nasal clip because of how tight his lip and nose were pulled by the stitches. Luckily, we had already made a lot of progress with his nose and the NAM in his first few months of life so we should still get good results in the end.

Our full lip/nose surgery is scheduled for August 3 and while I’m not looking forward to it, I am. The cleft journey certainly won’t be over, but we’ll be a huge step closer. Thanks for all of your love and prayers and support. We feel them and we’re so thankful to have so many people cheering us on. We’re excited and anxious for the coming week. Thanks for caring and coming along for the ride!