Dylan has what's called an Atrioventricular septal defects (AVSD) are a relatively common family of congenital heart defects. Also known as atrioventricular canal defects or endocardial cushion defects, they account for about 5 percent of all congenital heart disease, and are most common in infants with Down syndrome. (About 15 percent to 20 percent of newborns with Down syndrome have an atrioventricular septal defects). The primary defect is the failure of formation of the part of the heart that arises from an embryonic structure called the endocardial cushions. The endocardial cushions are responsible for separating the central parts of the heart near the tricuspid and mitral valves (AV valves), which separate the atria from the ventricles. The structures that develop from the endocardial cushions include the lower part of the atrial septum (wall that divides the right atrium from the left atrium) and the ventricular septum (wall that divides the right ventricle from the left ventricle) just below the tricuspid and mitral valves. The endocardial cushions also complete the separation of the mitral and tricuspid valves by dividing the single valve between the embryonic atria and ventricles. An atrioventricular septal defect may involve failure of formation of any or all of these structures.
Greg and I have known that he will have this surgery since the day he was born, but the reality of it finally set in this week. We were so nervous for Dylan to have to go through this and my heart hurt so bad for him. I wish as a mother I could have the surgery for him. Dylan is our little fighter and no matter what we new he would do awesome! Yesterday we checked into the hospital at 6:00am and we waited in the short stay unit till the nurses and doctors were ready for his surgery. It was a long hour waiting up for that surgery because we were not aloud to feed Dylan 6 hours before his surgery so he was a little fussy but finally passed out and took a little nap. When the OR nurse came to get us to walk us to the surgery room my heart honestly dropped and for one minute I thought I was going to pass out. As we walked down that hall way I held Dylan tighter and tighter, I new in just a few short minutes he would be undergoing one of the biggest surgeries he will ever have to experience. As we entered the room and the nurse said " I need to take Dylan now" my body shook so bad and Greg and I cried like we never cried before. We hugged and hugged him and I could not let go of him. Finally the nurse took him and said " we will take care of him"! In my head I knew that but the reality sunk in and all these over whelming thoughts started to run through my head. The thoughts that I have tried so hard not to think about but they finally came out. That thought of never holding my son again, never kissing those lips and never smelling his skin and never holding his little hands in my hands again the thoughts of something going very wrong, yes I thought of everything!!!! Greg and I our very strong in our faith and we knew God would be watching over him, but honestly no matter how strong you are I think with something so big you can always question, right?? As I am writing about this my stomach still turns into knots.
After we handed Dylan over we walked over to the waiting room where the next 3 hours would be the longest 3 hours of our lives. Our whole family was there to keep Greg and I company so that was nice to keep our mind off of everything. I could not eat, I could not focus on anything but the fact of waiting for the doctor to come out and tell us that everything went great! Well finally after 3 hours our doctor came out to tell us that everything went great and Dylan did awesome. This was the best news ever!!! Once we talked to the doctor we headed up to his room where they would be bringing him over and would stay the remaining of the week.
I know the doctors prepared us for what we would see when they brought him in and let me tell you it was not easy seeing your baby have all these wires hooked up to him. The next 24 hours Dylan would be pretty out of it and on a breathing tube to help him breathe. He looked so helpless and so little, but his surgery was a success and his heart will be strong and his future will be a brighter and better place.
Day one was a very long and draining day. I stayed in the room with Dylan and Greg went to stay in a hotel to try and get some rest. For the most part I slept. Dylan did great through the night. They had to give him some blood pressure medication because it was a little high but that is normal for just coming out of surgery. Other then that they kept him pretty out of it and comfortable. I am sorry if this post is a little all over the place, but I am on little sleep and I think my brain is maxed from all the anxiety and stress leading up to this surgery.
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| Dylan pre surgey. Waiting for the doctors and nurses |
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| Dylan after surgery |
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| Dylan and Daddy |
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