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

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

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!