If you missed the last post, Ethan was born with a complete bilateral cleft lip and palate. Shortly after Ethan was born I started doing as much research as possible on what our next step should be for him and treating his cleft lip and palate. Of course, all I could think about in the beginning were the questions I am sure any mother would ask herself: Why? Is this my fault somehow? Did the surgery I have affect him? Did I take the right vitamins and eat the right food? Could this have been avoided? The thing that breaks my heart the most about his cleft lip and palate is the pain this poor baby will have to go through to get to the end result. When Ethan was not in the room with me, I did as much research as possible on these questions. Unfortunately, nothing really gave me the answers I was looking for and soon I had something else I needed to research; how to feed Ethan. He was having a difficult time taking bottles and what we did get in him, he would spit up. We were using a bottle called the Haberman bottle. It was obvious that not even the nurses really knew how to use this bottle so I started watching videos and looking for alternatives in case this didn't work. After a day or so we figured it out and Ethan took his first good bottle from me. What a relief to know I would be able to feed my baby!
We are so fortunate that we have a family member that works directly with many of the craniofacial surgeons in Dallas. She helped us in the beginning in two ways; first, she assured me everything would be okay and second, she helped us in finding a great surgeon. I knew everything would be okay, but to have her reassure me of that fact made a difference in how I handled the thought of the next steps, I felt more at peace with what was going to happen. Jonathan and I have both said we could have picked a great surgeon, but to have a recommendation from someone in the field gives us an enormous amount of comfort. She told us about several of the doctors and let us choose from there, to say she has been a blessing to our family is an understatement. We picked Dr. Barcelo with the International Craniofacial Institute (feel free to check out their website www.craniofacial.net).
After meeting with Dr. Barcelo, we know there will be 2-3 surgeries in the first year of his life. The first surgery will be to close his lip when he is around 3-4 months old. If the space in his lip is too large, they will close his lip in two surgeries in order to not stretch the skin too much in two directions. This makes sense to me and I am glad they will do everything they can to make Ethan's scarring minimal, but I don't want the poor kid to have two lip closure surgeries. The second surgery will be when Ethan is about one and that will be to close the palate, but only the soft palate. The bone will be added when he is about 7.
We have many doctors in our future for Ethan, but we feel confident that we are doing the best we can for him and he will be a happy, healthy and very loved child.
