Where do I even start here? I’ve had this post about our cleft lip and cleft palate journey sitting around in my drafts since baby C was a month old. It just never really felt right to hit publish. I’m not exactly sure why. Maybe it was the many emotions I was going through, learning more about my newborn son, or the constant (and I mean constant) doctors appointments. It could have also been that it didn’t quite feel like a journey yet because we were just getting started.
When we learned at our 20 week ultrasound that we were going to have a child that would be born with a bilateral cleft lip and palate, in that moment, I’m not so sure I fully processed it all. I’m going to be as open and honest here as I can be, because in a way, I wish more people were open with us so that we could have better prepared. Then again, I’m not exactly sure you fully can prepare for things until you’re actually going through them.
WHAT IS A CLEFT LIP AND PALATE?
HOW DOES SOMEONE GET A CLEFT LIP AND PALATE?
WHAT ARE SOME OF THE STRUGGLES FOR A CLEFT BABY?
I can confidently say that feeding struggles will be a thing with cleft babies. Along with weight gain. I’ll expand on that more below. Our little guy also got tubes put in his ears because fluid with the ears is a common issues since their mouths are so open. We’ve also been warned there will be some orthodontic issues later on down the road and possible speech difficulties. His hearing is being monitored because his ear canals are so tiny and our prayer is that they will grow with him and hearing will not be an issue. Most doctor’s will recommend genetic testing to be done since clefts can also be related with other syndromes. We did have all of that done with him and we are so thankful there are no other syndromes associated.
HOW IS A CLEFT LIP AND PALATE REPAIRED?
Now with the weight issue out of our way, it was time to focus on his first surgery. Finding out he would need multiple lip surgeries was hard to hear at first. Of course we always want what’s best for him and to provide him with the best options to maximize his results, but here we were almost 6 months out and other babies around us were already done with their surgeries. That’s why it’s important to know that each situation from one to the next can be so different.
It was decided that he would have a lip adhesion surgery which is basically closing up the openings of his lip. That surgery day is something I will remember forever. It’s such a scary moment when you put your child in the hands of someone else. Especially dealing with things medically. Anytime someone is put under anesthesia there are risks involved, and waiting is the hardest part. Those moments where minutes can feel like hours. I kept trying to imagine what he would look like without his cleft. It was a part of him, and something we loved from the moment we saw him. It felt like a piece of him would be missing. His bright gummy smile that melted all of our hearts was about to go away. It was a moment we waited for to get to the point of surgery, and yet, I felt like I wasn’t ready to see those little openings close.
The surgery lasted for a few hours because he also had tubes put in his ears. Once we could go back and see him I immediately broke into tears. It was so hard to see him in so much pain. He was making a crying noise like I’ve never heard him make before. They needed to give him morphine to calm him down and my heart just about broke. A few hours later we did see some great improvements with him and he was starting to eat again. By the next day we started seeing glimpses of his smile and we knew he was going to be ok.
When we were getting ready to leave the hospital to go home with him, I had one of those flashback moments to when we had our first son and it was time to go home. We walked through those doors and looked at each other like, now what? Thankfully through his recovery he had so many more good days than bad. We stayed on top of his pain management because you could definitely tell when things started to wear off. He was eating like a champ and trying to wiggle his way out of his no-no arm bands. Those were fun to try and keep on.
After a few weeks after recovery and he was back to himself, and we were already in love with his new smile. It felt like we turned a major corner. It was like a lightbulb went off for him. He started making leaps and bounds in all areas and we loved seeing his little personality come about.
As we’re getting ready for his next lip surgery, I can’t help but have so many emotions again. His smile will be changing for the second time, and this time it will be his forever smile. We’ll have to get used to seeing him a different way, yet again. I now know the pain he will have to go through and the road to recovery that’s ahead. I also know this won’t be the last of it, and we’ll be on our way to his palate surgery at the end of the year. I have moments where I don’t want to go through this again. Then I remind myself I need to remain thankful that we have a fixable problem. Somehow through all of this it will make my little guy so much stronger. It’s teaching all of us different life lessons and has been a constant reminder for me personally. When I think about complaining when it comes to something with my appearance, I stop and count my blessings. The world needed my little guy in it, his cleft lip, palate, and all. Even through all of the tough and trying times there have been so many beautiful moments and memories together. There’s something so special about his little smile that has changed our hearts forever. I know that he has made me a better person and he is such a blessing to our family.