Anthony's New Smile
June 16, 2006
I will never forget the way I felt on this day. Anthony was up all night screaming because he was hungry and it was the hardest thing not being able to feed him. He looked at us as if he were saying, “Why aren’t you helping me?” It was awful. Neither Joe nor I got any sleep that night. I don’t think we would’ve even if we tried. We were so anxious about the surgery and how Anthony would do that it was hard to rest. We arrived at the hospital around 10 a.m., and the surgery was scheduled for noon. Things were running slightly behind but the nurse came and got him around 12:30 p.m. Dr. Carstens spoke with us before the surgery and assured us that everything would be great. We knew it would be, but we just wanted to fast forward the next 6 hours. I brought some of Anthony’s favorite toys and put them in his crib so that when he woke up from his surgery he would see something familiar and wouldn’t be scared.
Before we left for the OR we prayed for Anthony’s strength and for the nurses and doctors that would be taking care of him. I carried him to the operating room doors and didn’t want to give him to the nurse. I cried and kissed him and held him so tight and at that very moment I wanted to just turn around and say, “Forget it.” I was happy with the way he looked and I didn’t want him to go through all of this. I could’ve stood there all day just holding him but I knew that it was time. Joe held him for a moment as well as my mother but before they handed Anthony to the nurse I held him one last time and whispered a prayer for courage and strength in his ear and told him that I loved him more than anything on this earth. He cried as they walked him back to the operating room and I could do nothing but walk away.
I made sure that the nurse called us every hour to let us know how he was doing. Dr. Carstens said the procedure could take anywhere from five to nine hours. As we waited in the waiting room I prayed to his Angels to watch over him and hold his hand because I couldn’t be there to do it myself. I wondered what was happening each moment and counted the minutes to each hour’s phone call. Surprisingly enough, the time went by rather quickly and we received a call around 5:30 p.m. saying that everything was done and Dr. Carstens was just finishing up. Well, “just finishing up” took over an hour and it was the longest hour I can ever remember. When we finally got the OK to walk to the OR doors, I could hardly contain myself. All of our anticipation and anxiety would soon be laid to rest. We tried several times to picture what his new smile would look like but never could. The moment had come and they wheeled his bed before us. I took one look at my son and cried. I said, “That’s not my Anthony.” He was a little bruised and swollen and the smile that I had loved so much wasn’t there.
This was a very hard moment for us all. We knew that he looked great but he definitely did not look the Anthony that we all know and love. The Anthony that we knew was always smiling and so full of energy and life. He looked like he was hurting and I wanted to take it all away. Dr. Carstens came to speak with us and asked if we were happy with the results. Of course we were happy. We were just in shock because we had no idea what to expect. Anthony was staying the night in the hospital and we were staying with him. We couldn’t leave his side for anything in the world. Once we settled into his room, I held him for the first time since his surgery. I just looked at him and gave him as much love and energy as I could. Then he opened his eyes and I said, “There he is.” The light in his eye was the same, and at that very moment I felt relieved that the surgery was over and that we still had our Anthony.
The night proved to be challenging. He was in pain and couldn’t get comfortable. He drank a small amount from his bottle but nothing significant. We gave him Tylenol with Codeine but that didn’t seem to be enough. Around 2 a.m. we asked the nurse to give him the morphine that was previously offered. Initially we didn’t want to give it to him but we felt it would be best for Anthony. The morphine took the edge off for him and he was able to sleep for about 5 hours.
The next morning Dr. Admire and Dr. Carstens came to see us and they again showed us how to clean the tubes that he would be wearing in his nose for 2 more months. They also gave us some information about how to care for area around his lip. Instead of using stitches which tend to leave visible scars, they used Dermabond. Dr. Carstens explained that it was like airplane glue. We were not allowed to put anything greasy on this area because it would cause the glue to lift before Anthony was done healing. They also answered the questions that we had and we set a post-op visit for Tuesday, June 20. After signing a few papers for the nurses, we were on our way back to our hotel.
For next few days Anthony was not himself. He was very sleepy and uncomfortable and it was hard to see him like this. He wasn’t sleeping or eating well for the first few days and he became very swollen between the second and third day. We had trouble keeping his arm splints on because he got very clever with taking them off. At first he learned how to pull the right strings to untie them so we would just keep retying them. Then he found it easier to just grab them at the top and just yank them off. We retied those things a thousand times and after four days we gave up. He was supposed to wear them for 2 weeks but that didn’t sound good to Anthony. We mostly held him so it wasn’t difficult to keep his hands away from his face. In fact, I think he knew that it would hurt so he didn’t really try.
June 20, 2006
Anthony's first post-op photos
This was the day of our post-op visit. The swelling had gone down and we could recognize our son again. Dr. Carstens and Debbie showed us how to get all of the build-up off of Anthony’s nose and lip and we began to share with them what led us to St. Louis. We told them about the article we read about Quinn and how Dr. Carstens’ use of BMP seemed to be the best choice for Anthony. It just so happened that Quinn and his mother were in the building that day for speech therapy and Debbie arranged a meeting for us. It was amazing to see Quinn and how wonderful he looked. It was because of him that we found Dr. Carstens. We thanked his mother Judee and told her what an inspiration Quinn was. We are so thankful that they were brave enough to take a chance on this new procedure.
Anthony is the first person in the state of Nevada to undergo this new procedure to repair a cleft lip/cleft palate. Our hope is that others read our story and are inspired to seek Dr. Carstens’ help, whether it is parents of children with CL/CP or other doctors who want to learn how to perform this procedure using the BMP. I just can’t imagine seeing Anthony go through as many as 20 surgeries over the course of his life. By having the BMP, Anthony will be finished with his surgeries in only 9 more months. What a blessing it is to know that by the time he is 18 months old all of this will be behind him. I wouldn’t change a thing about Anthony or the way he was born. The only thing we could do was make the right choice for his treatment, and we believe with all of our hearts that we did. God did lend us an angel when he blessed us with Anthony and we feel that Anthony’s experience is meant to help others. We don’t look at this as a disability or a special need. This is an opportunity to help other families in the same position as us. God truly did give us Anthony for a reason and we must always remember that his cleft is not his special need; he is special because of his cleft.
7 months old
8 months old