Cleft Lip and Cleft Palate Story- The Palate Repair Surgery

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Today's post is one that I'm actually very happy to write. Writing it means I've made it to the other side and I'm here to tell the tale. Ever since we found out that our baby would have a cleft lip and a cleft palate (and what that would entail) I've been dreading the palate surgery. I knew it would be the hardest single event in the journey- or at least I had been told as much and I believed it. As surgery dates grew nearer, I dreaded it more and more because I saw how much older Rush was getting and how much more aware he was in general. I felt terrible for putting him through it and I desperately wanted to find a way out of that repair. Did it really need to be done? Could we just opt out? Nope. It did need to be done. There was no other way. We didn't find a way out and instead we worked it out and toughed it out and we are here, fully recovered, ready to tell our story. 

Rush Nickels - Cleft Lip and Cleft Lip Baby

Rush was scheduled for palate repair surgery at 14 months of age.  A few months before surgery we met with our team and they prepped us for surgery and did a full exam. They weighed him, measured him and did a hearing test. We learned that he would need to wean off his bottle by the time of his surgery and learn to drink from a cup. They gave us a slow flow cup to practice with and recommendations of sippy cups (with no suction) to buy and try. Post-surgery Rush wouldn't be able have anything in his mouth that could possibly touch the roof of his mouth, including a bottle, so bottles needed to go. At the time that seemed impossible. Rush's only comfort items were his blanket and his bottle. I knew weaning off the bottle would be hard. 

We also had a hearing test at that time to determine if he would need ear tubes. Many babies with cleft lip and palates have frequent ear infections and end up with fluid in their ears. Rush has never had an ear infection, but his hearing test didn't score perfectly. They determined that he did have a small amount of thick liquid built up in his ears and that tubes would help drain that. They scheduled him to have ear tubes put in during surgery as well so that his hearing could improve a little and for precautionary measures. 

We went home after that exam and I didn't give it all a ton of thought. I knew we had a few months and although we didn't wean him off the bottle, we did start using cups as often as we could to help him get the hang of drinking from that edge. Over the next few months we worked on reducing bottles and moving to a cup, but Rush loved his bottle. Because he couldn't use a binky (no palate means no sucking function), his bottle and his blanket became his comfort items. We weren't successful in taking his bottle entirely away, but he did learn to drink from a cup pretty well by the time he was 14 months. 

A week before surgery we went back in for instructions and a pre-op checkup. Rush passed all of his tests, but I made the doctor nervous by saying that Rush wasn't weaned from his bottle. In order to go home after surgery Rush needed to be drinking from a cup. The doctor warned me that Rush may have a harder time being ready to go home if he still wanted a bottle rather than cups. At that point Rush still took a bottle at night and sometimes in the middle of the night when he woke up and I felt so bad taking them away from him. We went home from that appointment and quit them cold turkey and that was no fun. I felt so bad for Rush, but I didn't want him refusing to drink in the hospital post-surgery so we went all in on cups. 

The few weeks before surgery we tried out a lot of liquids. Post palate repair Rush was prescribed a two week all liquid diet, so we tasted a lot of liquids. We stocked up on all kinds of things, but the following ended up being his favorites: 

Danimals Yogurt Drink
Cream of mushroom/chicken soup
Very thin Cream of Wheat soup
Carnation Instant Breakfast chocolate powder
Thinned down pudding

Cleft Lip and Cleft Lip Palate Repair Surgery - OLM

The hospital called us the day before his surgery to tell us his eating schedule and surgery time. He was scheduled to arrive at 6 am. He could eat normally till 1 am and then between 1-4 am he could only do water, pedialyte and apple juice. Nothing after 4 am. We gave him a bath the night before, washed his lovie blanket and all tried to get to bed early. 

Rush did really well in the morning. He was excited to wake up and go somewhere new and really didn't seem to mind anything until we were put in our exam room. We had to wait in the pre-surgery exam room for an hour or so while we met with the different doctors, nurses and specialists that were working on him that morning. We saw the ear, nose and throat doctor that was putting in his ear tubes, the anesthesiologist, our surgeon and more. Rush did not want to stay in that small room and wasn't easy to keep entertained. They finally took him back to surgery at about 8:15. I held back a few tears, but overall Rush was happy to go with them and Soren and I kept it together. 

We went to the waiting room and spent the morning talking and working on a few things. The surgery was supposed to take about three hours, but it went faster for us. We got a call from the doctors that things had gone well, and we got to see Rush at about 11 am. It was a big relief to see Rush, but also hard because he was so out of it and you could tell he felt terrible. 

Rush Nickels - Cleft Lip Baby

His recovery went about as I expected. It typically takes about 12 hours for the effects of the anesthesia to wear off and it's a rough 12 hours. Rush slept on and off, but when he would wake up, he wasn't happy. We did our best to keep the pain meds constant, but aside from the pain Rush also hated all of the cords and monitors that he was hooked up to. It was hard to hold him or carry him around because of the cords and because he is so heavy! Soren and I took turns for much of the day, but Rush really just wanted me. 

Cleft Lip Palate Repair Surgery

Soren went home that evening to take care of the other boys and I spent the night with Rush. I wouldn't recommend that set up! I wish Soren had been able to spend the night with us because only having one adult to take care of Rush was hard. The nurses were helpful, but it was so hard to go to the bathroom or to get any sleep. Rush wanted to be held full time and wouldn't sleep alone in his hospital bed. I watched movies all night and made the best of it, but it was a LONG NIGHT. 

Rush Nickels Palate Repair Surgery - One Little Momma

Thankfully Rush started feeling a little better at about midnight and at five in the morning he was quite awake and chipper. The nurses took his IV out because he was drinking a tiny bit and he was SO HAPPY to be off those monitors and cords. He got to play with some toys and was spinning circles being his silly, relatively normal self. It was pretty incredible!

By 8 am he was literally running the halls of the hospital wing and playing with all of their toys. The nurses fell in love with him and couldn't believe his attitude this early in recovery. I was exhausted but so grateful to see him perk up and feeling well. I was able to get him to start drinking some chocolate milk and that was also a huge relief. Throughout the morning we were able to get him to drink enough that the doctor decided to discharge us. He was so amazed at Rush's recovery and how well he seemed to be doing the day after surgery.

I was more than ready to get out of there and so I packed us up. Soren had left us a car, so we picked up Rush's prescriptions and went home to take a nap. Our discharge orders were to keep our meds going for the next few days and to keep Rush on a strict liquid diet for two weeks. He also had to wear arm braces to keep him from touching his mouth or putting anything in his mouth. 

I'm not going to lie, it was a long two weeks. Rush didn't love the liquid diet idea and neither did the rest of us! None of us could eat in front of him because he would get so mad, so we all walked around hungry all of the time! We found a few things he liked and he ate those over and over. He did lose a pound or two over the two weeks, but not enough to be worried about. 

We had a follow up after two weeks and I was really nervous about it. I was so scared that the roof of his mouth hadn't healed right and that we might have to go back in for surgery. During the two weeks post-surgery it's possible for a hole to open in the palate the doctor had created. At that point I was feeling worn pretty thin. The two weeks of recovery and the surgery itself were pretty exhausting and I was not prepared for another surgery to fix anything else that might not have healed well. I was sick about the idea of something having gone wrong, but I have never been so relieved as when Dr. Jiang said his mouth looked great! It was healing just fine and we had no problems to worry about. What a relief!!!

Rush Nickels - Cleft Lip and Cleft Palate Journey

We were told we could move to a soft food diet after the two-week follow-up and after another week we could move back to a mostly normal diet. The entire family was so happy when soft foods became an option for Rush! We all survived the food restrictions and Rush continued to heal well. We are now two months post operation and Rush has a roof of his mouth! It's incredible to see how the doctors have been able to fix his lip and his palate in such a perfect way. Rush no longer has food coming out his nose and nothing gets in his way. What a blessing! It really is such a miracle. 

As far as Rush's future- at this point we will wait and see. Rush may need some speech therapy to help him form words now that he has a palate, but he may also pick them up on his own. He currently only says "momma", but he is 16 months and still has some time. He will definitely have another surgery when he is around 8 years old to fix his gum line (it still has a cleft) but we may not have any other surgeries until then. At this point we are feeling pretty free and so incredibly thankful for where we are today. It's been a long 16 months, but so worth it. The hard times were bearable and we're all stronger for it. Rush is the happiest, toughest little guy and we can't imagine life without him. I'm so thankful for our little cleft lip and cleft palate baby. He's the best! Thank you for all of your thoughts and prayers- I know that things went even better because of them!

If you have a baby with a cleft lip or palate or are expecting a baby with a cleft lip or palate, check out my other posts/resources below:

WHEN WE FIRST FOUND OUT

PREGNANCY UPDATE 1

PREGNANCY UPDATE 2

PREGNANCY UPDATE 3

BIRTH STORY

CLEFT 101

SPECIAL NEEDS BABY

LIP ADHESION SURGERY

UPDATE

LIP REPAIR SURGERY

2 comments

  1. I'm glad surgery went well! Thanks for posting about your experience. I've been sending friends to your posts when they found out their babies have a cleft lip & palate.

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