Kaeden was born 3 and a half weeks early and when he came into the world. He lay on my chest and I was overwhelmed with emotions. I hadn’t seen his face yet, and soon the doctor took him away and asked the nurse, “Did we know about this?”. I tried to stay calm and not worry. They quickly explained that our sweet baby boy was born with an incomplete unilateral cleft lip. The next 24 hours, I mourned the loss of what I thought was the “perfect baby”. 

It was day two at the hospital when I was holding Kaeden and he looked into my eyes; immediately, all my worries and my fears, washed away. He WAS perfect. He IS perfect. According to the experts and lactation consultants, we should have been able to get breastfeeding to work and we should have been able to use a normal bottle for him. We spent many hours trying different things with tears, frustration and no luck. It took a good 3 months of switching from bottle to bottle and attempting breastfeeding to find something that worked.

November 2nd we headed to the hospital early in the morning for Kaeden’s surgery. He was being such a good boy. I’m so glad he was so sleepy because it had been so long since he had eaten. He was sleeping right up until we handed him off for surgery. We got to the recovery room and in a raspy, weak little voice, our baby was crying like never before. It was heartbreaking trying to calm our swollen and bruised baby boy after recovery. It was frustrating trying to get him to eat in a new way he wasn’t used to and trying to get him to sleep in hospital full of noise. I felt like we were force feeding him as he was learning to eat by syringe.

The first couple days he would just cry as we tried to feed him. But, it didn’t take long at all and he recovered so fast. He was smiling and talking the morning after the surgery. By a week and a half he was back to his old self, but with a new smile. When you think of it, the time these cleft children spend in surgery and recovery is so minuscule in comparison to the grand scheme of things. As trying as it was going through the struggles of feeding and surgery, I would do it all over again, because I love him so much. I don’t remember the trials that well, it’s the rewards of the journey that sticks with me.

As I think back now, I’m glad Kaeden’s cleft was a surprise. This way, I didn’t have much time to mourn that “perfect baby”. I was simply thrust into the joy of the parenting journey. I went from mourning the loss of the “perfect baby” to mourning the loss of his beautiful cleft that I loved to kiss. His face has changed, but he has stayed the same happy, friendly, adorable, loveable, cuddly baby that loves to make people smile and whom I love to love. Now, you would never know he was born with a cleft lip. At 17 months, he is actively getting into things, practicing his talking and learning new things everyday.

After Kaeden was born, I had searched online for support and found an online cleft discussion board. After being there for a while, joining the cleft community, supporting others and reading many other amazing cleft journey stories, I realized that there were a lot more stories out there that needed to be shared. I thought it would be a wonderful idea to gather our stories to compile a book. I brought this idea to another cleft mom and now our vision has come to fruition. I have compiled stories from parents of cleft affected children to create the book titled ‘I Wish I’d Known... How Much I’d Love You’.


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