When Her Son Was Born With a Cleft Lip and Cleft Palate, Kilee Nickel's Journey Began In her own words.

By Kilee Nickels | Photos courtesy of Kilee Nickels

As a mom of five boys, I’ve learned countless lessons over the years. I thought I had pretty much figured things out when we found out we were pregnant with our fifth. Boy (pun intended), was I wrong! 

Our fifth boy was born in 2018 with a cleft lip and a cleft palate, and our journey with him has sure kept us learning. We’ve learned a lot about ourselves and managing life’s expectations. I’ve personally found a lot of meaning in our journey as I’ve shared what we’ve learned to help other parents. 

When I was 18 weeks pregnant, we headed in for our planned ultrasound. I fully expected to have another boy, so I was ready. We had the ultrasound and learned that we were having a boy, but more importantly that he had a cleft lip. It was visible in the ultrasound and that’s all they could tell us. I was completely caught off-guard. 

We were sent to make an appointment with a high-risk pregnancy office. I was not okay. I started googling things (never a good idea) and blaming myself. My brain started running worst case scenarios and the appointments with a high-risk clinic didn’t help. At the first appointment we learned that our baby not only had a cleft lip, but a cleft palate as well. He also he wasn’t measuring as expected and he may have down syndrome. It was pretty nerve wracking to say the least. We had more tests done, but in the end, my husband and I were resolved that any birth defects wouldn’t change our mind about going through with the pregnancy. 

The specialists told us what they could and offered to set us up with a consultation before birth with our cleft team. Even then the cleft specialists could only offer us general information and so it appeared that all we could do was wait and see. We. Just. Had. To. Wait. 

During the long months left of my pregnancy, I could tell anxiety was going to be my biggest obstacle. Anxiety and depression have always been one of my pregnancy symptoms – even more so than nausea. And with a birth defect (or multiple!) in the mix, I was even more at risk. I intentionally worked on keeping my thoughts off the future. I could not spend time thinking about the what-ifs. I had to believe that the future would be manageable once it became the present.

I tried to train my brain to focus on the present to keep my mind off the future. I learned that I could handle what I needed to for that day. Some days I had to take it by the hour, or by the minute, but I kept going. I learned to trust myself and chose to put fear out of my mind. I got back up each day – knowing that I faced an uncertain future.  

The day our son was born marked a big change in our lives. What would he look like? Would he be able to eat? Would we feel any differently toward him than our other kids?

Rush Reagan Nickels arrived, and he did look different. But he also looked like ours. And we instantly felt an even stronger desire to protect him and make sure he would be alright. After months of worry and stress, it was so peaceful to have him in my arms and know he was okay. He would be okay. We’d make sure of it. 

I had no idea how much I would be stretched over the next few months. Between trying to pump, take care of my 4 other boys, the normal up-all-night baby stuff, and then his appointments, it wasn’t easy.  We had weekly appointments that were pretty interrupting in our lives. We had to tape Rush’s lip daily and then work with an orthodontic device daily. For 10 weeks. There were two surgeries and recovery time. I was so tired, but we made it work. We had so much support and help, and honestly the biggest champ of the entire situation was our son Rush. 

I learned that I could handle what I needed to for that day.

Through it all, Rush was a trooper. He smiled so early and has been the happiest baby. He rarely complains and takes everything in stride. He is easily amused, loves entertaining others, and exudes happiness.  I’m so thankful for the experience of having a baby with challenges attached. It has only changed our lives for the better and the struggle was 1000% part of that joy.

Many soon-to-be cleft mommas have messaged me since our son’s arrival, and I can always feel the familiar sense of worry and fear. And I’ve found that the message I always share is this: You can handle anything if you can stay in the present and take things one day at a time. You can do this. Your baby can do this. Just keep swimming. 

This month, we prepare to go in for Rush’s fourth surgery to date. Our surgeon will be expanding his palate to improve his speech. We’ll be in the hospital for one night and then 7-10 days of only liquids. For a four-year-old! And despite my natural inclinations, I’m choosing not to worry. We’re just going cross the bridges as they come. We’ll get there and we’ll be ready to go, and I know we’ll be okay. We have lots of previous hard days that have proved it so. 

We’ve been so fortunate to have incredible medical staff at the Children’s Mercy hospital that have supported us along this journey. Their care has meant everything to us. This last year, Nickel & Suede designed the Love Will collection that donates proceeds to their Children’s Mercy Fund. It’s been incredibly rewarding to be able to give back to the teams who were there for us on our darkest days and our longest nights.For more information about our cleft journey you can find it here.