Navigating Our Cleft Journey-#CleftStrong

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. 

I’m not sure there’s an ideal time to share any of this, because in many ways, it feels like our journey is still just getting started. But here we are. I’m going to share from my heart and hope that no matter how all of this comes out that someone who needs to read this might find peace, hope, or a sense that you’re not alone regardless of the journey you’re going through.

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. 

My loyal readers have heard me mention several times that it’s our cleft journey. As I read it out loud, I almost feel guilty for labeling it that. There have been so many times I wish I could switch places with him and make all of this go away. Then I think, this isn’t physically happening to me, so how is this part of my cleft journey? You quickly learn when you have a child with a cleft that it becomes a family affair. It’s an experience and dedicated time that your whole family embarks on, whether your role in it is big or small. You become your child’s primary caregiver, their voice, and their biggest advocate. Their siblings become their greatest support system, and ultimately, you all find ways to navigate through this together.

Let’s rewind a bit, back to the beginning. I shared more about his birth and what life looked like within those first few weeks. Looking back, I would have never imagined the trials, struggles, tears, heartache, and exhaustion that would come with it. Yet, somehow, in the midst of all that felt like it was spiraling out of control, you have those moments of peace, of feeling His grace, and experiencing the same joys and excitement as you would with any other child. And to be honest, experiencing them with a child that has a birth defect might even feel a smidge more sentimental, just because. 

I’m going to try my best to address some of the most common questions we get regarding his cleft lip and cleft palate.

A cleft can come in many different forms and happens early on in pregnancy around week 7 when the lip and/or palate area do not properly fuse together. Some children can have a unilateral cleft lip (just one opening on either side of the lip), a bilateral cleft lip (openings on both sides of the lip), a cleft palate (the inside roof of your mouth being open but no cleft lip). or you can have both. There are also partial and complete clefts. Which in his case he has a complete bilateral cleft lip and palate. His case was more sever and extensive, which I’ll get into that as we move along. There can also be other clefts related to craniofacial deformities, but we’ll stick to what we know which is a cleft lip and palate.

First off, I want anyone who is reading this that might be pregnant with a cleft baby to know it has nothing to do with anything that you did. I drove myself crazy the first week I found out questioning so many things. Did I eat enough avocados, did I forget to take my prenatal vitamins for a few days, was my age playing a factor. Your mind can do all sorts of crazy things and so much guilt can set in. What we learned is, for the most part, it’s just something that happens. Unless it runs in your family and is hereditary, the chances of this happening to anyone are similar. In fact, it’s one of the most common birth defects there are and affects about 1 in 700 children. I also want to mention, you may experience many different feelings as you navigate things. Many of those feelings can come and go at different times and some may linger more than others. If you ever feel ashamed of your baby or think that your feelings are going in a different direct, I would encourage you to reach out and get some extra help and support from a professional. 

Since I’m speaking form our personal experience, it’s important to also note that each situation and child will have a different journey. Ours was a bit extensive (ok, who am I kidding) it was extremely extensive. I’ll explain more. When our son was born, his cleft on one side was very significant, we had an idea it would be that way from seeing so many ultrasound pictures. I can’t even tell you how many ultrasounds we had, but it was one every visit. His premaxilla (the center jaw bone area) was protruding out and rotated at almost a 90 degree angle. To put it as plain as possible, his poor little front jaw was sticking outside of his mouth and all kinds of twisted. Because of the intensity of the size of his cleft he had no sucking power. Breastfeeding was not an option for us. I’ve spoken out about that a lot on my instagram (@beautifully_candid). I pumped for him and was bottle feeding him which did not come easy for him. The hospital he was born at provided us the Mead Johnson Cleft Lip and Palate bottle that we had to squeeze into his mouth. Lets jus say it was horrriblllle. My wrist still hurts from it and he was constantly chocking. We switched to the Dr. Brown’s bottles that worked better but it still wasn’t our golden ticket. We finally came across the Pigeon bottle that has been a game changer for us. They are not cheap, but boy was it worth it for us.

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.

This is where our journey takes a drastic turn because the “typical” lip repair surgery can happen anywhere between 3-4 months depending on the surgeon and situation. Our son did not have his first lip repair surgery until he was almost 7 months. And that was only for a lip adhesion. He won’t have his full lip repair until he’s almost 10 months old. That’s when they will rotate his premaxilla back into place and give him the best lip line that they can. After that, he won’t have his palate surgery until he’s after a year old. Then from there, he may have several touch ups if needed, and then a bone graft will be done somewhere between age 7-9. A cleft child can have multiple surgeries up until they are around 18, or when ever it’s necessary. We were also advised that a lot of orthodontic visits will be in our future. Things like palate expanders and all that good stuff may be down the line. 

Now I’m going to focus on my little guy specifically from here. Oh that sweet boy. The one that I often look at and feel that he is an angel sent down to me from heaven. I was nervous at first to meet him, and in a way, I’m so sad (and even embarrassed) to admit that. I tried so hard to envision what he was going to look like, what I was going to say to him, and how we were going to work all of this out. Something so special and peaceful happened to me when they placed him in my arms for the first time. All I could say when I locked eyes with him was, hello handsome. And that he was. Gosh he was just beautiful in every way. Every fear that I had seemed so insignificant in that moment. This was our son. Our son who was created in His image with a plan and a purpose for this journey. It was a privilege that I was chosen to be his mother.

He spent a night in the NICU for monitoring and feeding which ended up being really hard on me. Here I just had a baby and I couldn’t even have him right next to me. Not to mention, I was recovering and forcing myself to make it up two other floors to spend time with him. Walking in the NICU and seeing these teeny tiny babies put so much in perspective for me. Here we are with a baby that we get to take home, that has a fixable problem, and will be just as normal as any other kid in so many ways. I used to get annoyed when it felt like people would kind of brush over the subject when we told them he was going to have a cleft. I don’t know if I was secretly looking for sympathy, prayer, or to just talk about it, but some people would say, oh that’s not a big deal they’ll just stitch him up. Or, so and so’s son had that and he’s perfectly fine now. I knew that eventually we would also get to a point where he’d be fine, but in those moments, it felt so far out of reach. Looking around at those other tiny babies gave me hope, and also made me thankful. I stared at those tiny incubators with so many beeps and cords surrounding them and felt guilty that I was worried about our situation. 

What I didn’t realize as we walked out of those hospital doors was all of the behind the scenes things that would begin to take place. Those are the things that no one thinks about, or really talks about. Those trying moments that many people can’t relate to. We quickly learned at our first doctor’s appoint that baby C was dropping weight. We then followed up with weekly weigh-ins that unfortunately were let down after let down. We didn’t know if it was the calorie intake with my milk, his difficulty eating, his cleft palate, or a combination of several things. After many weeks of trying to see some positive gains, we started supplementing with a high calorie formula. I thought I would have felt crushed since I breastfed my other two boys exclusively. I think I was physically drained from pumping, and at the end of the day, you just want what’s best for your baby. I did miss those moments with him, but now being on the other side, I know that bottle fed babies share many of those same special bonding moments. We did see a slow incline in his weight after making some changes, but nothing really substantial that was no longer a concern.

It was time for him to be fitted for his NAM (we all called it his mouth piece or baby retainer but it stands for Nasoalveolar Molding) that helped create a fake roof of the mouth for him and also to helped to rotate his premaxilla towards the center of his lip. This was all in preparation for surgery. I have such a love hate relationship with the NAM. Along with his NAM came some crazy taping. We had to make these little strips with braces rubber bands to strap onto to it to hold into place. Oh my goodness, let’s just say I do not miss that at all. We would be up at night making these things with rubber bands flying off our fingers and landing all over the place. Yeah, fun times. Along with that came a lot of patience (which is something I don’t have). Don’t get me started on when he got old enough and thought it would be funny to constantly pull his NAM out. We eventually put socks on his hands, which he figured out how to take off, and there was a point at the end where we ended up just putting it in for feedings and sleeping.

His first NAM unfortunately was not helping him as much as we had hoped for. I would have to drive over an hour each way for the doctor to make weekly adjustments. The best way I can relate it is that it’s like having braces tightened. It got to a point where his first team gave us some signs that his case might have been a little more extensive than what they were used to. His new pediatrician had been a big advocate for him and we know she truly wanted to help him. Long story short, after being told by our first hospital it would take 6 months to get certain appointments, we decided to ask our new pediatrician for another recommendation. She pointed us in the right direction and the rest is history. It was a no brainer that hands down this is where we were meant to be. We are so grateful for his current team and to have some of the best in the country taking care of our sweet boy. What I can also say is, if you ever feel that something isn’t right, or your child isn’t getting what they need, don’t be afraid to speak up or consider getting a second opinion.

The next few months consisted of him being refitted and getting a new NAM, along with those wonderful weekly visits for his adjustments. All of this was on top of his weekly weigh-ins, visiting ENT doctors, feeding specialists, GI doctors, ophthalmology, and his regular monthly wellness visits. I honestly cannot even tell you how many doctors appointments I have been to with him. On average we were at the doctors anywhere from two to three times a week for the first 6 months. I’m pretty sure he’s been to more doctors appointments than I have in my lifetime. 

Our new normal became spending a lot of time in the car, making memories in waiting rooms, and him constantly getting looked at and examined. Yet through it all, this little guy would just smile and give me so many moments of knowing that all of this will be worth it in the end. His strength and determination is inspiring and I know that he has already touched so many people. Some we might not ever even know about. I would be out with him in the grocery stores and he would bring tears to people’s eyes that would say just seeing his sweet smile would make their day. There have been so many that I’ve connected with on social media (#Cleftstrong), that I call my friends from afar who are also navigating similar journeys. Through all of this, it’s also given me so much personal growth. I wasn’t even sure how open I would be about him on this little space or social media, but you quickly learn that there are still so many good people in this world that want to be a support to you and lift you up in times of need and that we all have different things we’re going through.

Once we got his new NAM in place we noticed a slight incline in his feeding, but he still wasn’t gaining the weight that he needed. Looking back, seeing pictures of him and how tiny he was, it’s almost scary in a way. I’m going to fast forward a bit here because I’m grateful if you’re still even here reading this far. His weight got so bad that we were quickly escalated to feeding specialists. At that appointment they were ready to admit him to be put on a feeding tube. Let’s just say I was not prepared for that. I did know that it could have been a possibility, but not right then and there. I have two other children at home, and was not prepared for any of this. With much reluctancy, they did let me go home with him, but told me when I came back in a few days to bring a packed bag and to be prepared to stay for up to four days with him because he would be admitted. I was heartbroken. All of that hard work, feeding schedules, feeding journals, it all seemed for nothing. I knew it wasn’t the end of the world, and many kids have been on feeding tubes, but it was a moment of feeling defeated. He also had a hernia surgery when he was three months old (not cleft related) and the last thing I wanted him to do was go through was more than he needed to. When we got home I began to make some phone calls to let others know what was going on. Prayers quickly began to be lifted up for him. I sat him down and told him, if you don’t want to go into the hospital, you have to start eating more. We prayed over him so hard and pretty much trusted in God for a miracle for our boy. A few days later we went back for our next appointment and when I placed him on that scale, the doctors could not believe their eyes. I couldn’t even believe my eyes. He gained 9 ounces in a few short days, which was huge for him. They sent us home and said whatever we were doing to keep it up. Week after week he began to gain more, and the rest is history. Some doctors have even told us it was a medical miracle. Many thought he would end up tapering off again and would not be able to keep up the consistent weight gains, but that never happened.

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.