Jackson, born 2010
Jackson was born on October 27, 2010 by a scheduled repeat c-section. When he was first born he had some difficulty transitioning in the operating room but in the recovery room he seemed to be doing better. He was an angel in the hospital and the only concern was his occasionally fast breathing and a heart murmur. They were not concerned and we were sent home with our beautiful baby.
We went to our scheduled appointment with our pediatrician when he was 5 days old. Our pediatrician still heard a murmur and referred us to a pediatric cardiologist. We went when he was 6 days old to the cardiologist and an echocardiogram was done. Then the cardiologist asked us to come and sit in the office to talk. My husband said he would stand and she insisted that she was going to get him a chair because he needed to sit. I will never forget this day. The next thing she said was "since we need to come in the office and sit down you can see that this was not an innocent murmur." From that point on I could not comprehend anything. This is the day we got the diagnosis of AV Canal without Down Syndrome and were referred to Johns Hopkins for treatment.
Currently we are waiting for Jackson to get his surgery to repair his AVCD. He currently is not on any medications and is such a happy baby. We still notice he breaths rather fast but if you did not know his story, you would not even know he has a CHD. The cardiologist informed us at our last visit he thinks surgery will take place in the fall, which will make Jackson almost one. This has been an unexpected and emotionally difficult journey.
UPDATE: June 2011
Jackson's journey has continued. He started not gaining weight and in April we were notified that it was time to schedule his surgery since he had actually started loosing weight. He had is surgery to repair his defect on May 2, 2011. He did so well that he only had to stay in the hospital for 3 nights. Amazing!
Since Jackson has been home he has been continuing to amaze us. Before surgery it took him 2.5 months to gain 3 oz and after surgery in just 6 weeks he has gained 2 lbs. He is now 7.5 months old and to our surprise he wants to start walking. He is a very strong and determined little boy.
Life is so great and we are loving every moment.
Story by Jackson's mom, Jennifer- MARYLAND
Madeline, born 2003