Ayden, born 2011When we found out we were pregnant it was one of the happiest days of our lives. We learned of Ayden's heart condition at our 18wk ultrasound. It was so hard to learn of this heart condition (Balanced AV Heart Canal Defect) the day we found out we were to have a boy but a blessing at the same time. I say a blessing because it is better to know of this ahead of time, rather than being caught off guard.
He was born July 16, 2011 at 6lbs 13oz, and 21.5 inches long and is doing well. He will need corrective surgery this year and they'll do it before or after winter. An ultrasound revealed that one of the holes is smaller than anticipated and could be why he has been doing well.
Ayden has been a joy in our lives. We see more and more of his personality come out everyday. He is lifting his head and moving it around already and he loves to smile. As of September 15th, he is 9lbs 4.5oz and is very active. We are looking forward to September 29th to find out his progress and when his operation will take place.
DECEMBER 2011 UPDATE:
He was admitted to CCMC for a week in November due to weight loss. He had to have a NG feeding tube. It was very difficult to see him with that tube but we knew that it was for the best. We fed him as normal during the day and he was being tube fed over night. It did the job because Ayden gained 2lbs! The next step was surgery which was scheduled Dec. 5, 2011. They took our baby from us at 7:40am. Having to give him away to the nurse was so difficult. Thankfully our family was there with us in the waiting room. We took some comfort that they were there for us and Ayden. We got the first phone call at 10am from the nurse that was in the operating room. She let us know that he was on the bypass machine and that he was doing great. As relieved as we were to hear that, we couldn't help but picture him in that room with all the tubing and machines. We were so emotional. Two hours later we got another phone call from that same nurse. She let us know that the operation was complete, Ayden was doing awesome, and that the repair went beautifully. We immediately began crying...tears of joy and tears of relief. We couldn't believe that the operation was done so quickly! About an hour and a half later we finally were reunited with our little tough guy. We were prepared to see him with all the tubing but not seeing the tape that covered his face due to the breathing tube. It was heartbreaking. But again, for the best. Day 2, Ayden was taken off the ventilator! He was doing very well. They kept him asleep of course but it was great seeing his face. Day 3, they took out the chest tube and let him wake up. He was just such a trooper. By that night he was acting like himself. We couldn't believe how quickly that happened. They kept him in the PICU still to monitor him. Some fluid had built up around his heart and they of course wanted to make sure that it was going away. Day 4 they did an ultrasound and sure enough that fluid was slowly clearing. So he was then moved out of the PICU and into a regular room. Day 5 we continued to work with Ayden to get him eating more. Before the operation he would get tired when eating from breathing so hard. Day 6 we got to take our tough guy home! The Dr on service that weekend wanted us to get him home in his own environment to try to see if he'd eat more. His goal was to eat 5oz in one feeding. After a few days of being home Ayden had finally done it! 5oz in one feeding!! Today Ayden continues to gain weight and all of that fluid is gone.
We are so grateful for all of the support we have gotten from our family, friends, and the Little Hearts Community. We look forward to attending the picnic and have decided that we want to take Ayden every year.
Story by Ayden's mom, Yvonne - CONNECTICUT
Ryan, born 2004
Lydia, born 2010