This is a post I made just 3 weeks after Bailey was born. I was terrified, sad, and confused. It's amazing how just a little over a year everything can change. I'm now happy, excited, and content with the life of my family and our future.
It's Monday May 28, 2007 and our second daughter, Bailey, is 3 weeks old. This has probably been the longest 3 weeks of my life. My husband and I arrived at the hospital on May 7th for our scheduled cesarean. I arrived to an empty room after recovery. My husband, our parents, and our other daughter were in the cafeteria eating and Bailey was in the nursery. About five minutes after arriving in the room our pediatrician came in and informed me that several doctors and nurses feel our daughter may have Down syndrome. I, of course, didn't feel this was true because I had the triple screen and ultrasounds. My obstetrician said they were normal. So how could this be true? The pediatrician told me he did blood work and we'd get the results in a few days. Soon after I was able to hold my beautiful little girl and start the bonding process, which was very easy. On May 8th the pediatrician once again returned to my room. He said that he hears a murmur and that he would like to do an echo cardiogram. He said if Bailey has a heart defect they would send a cardiologist in to talk to us. A few hours later the cardiologist arrived in the room and said Bailey has AV Canal defect. My heart dropped. Once again I am alone in the room and getting results that will change my life forever. On May 10th my daughter and I were released from the hospital. Finally I could go home to my husband and our other daughter Aubrey. It was nice to be together as a family. Bailey was eating well, but still wasn't eating as much as Aubrey did when she was first born. We has an appointment on the 11th with our pediatrician. He was concerned with Bailey's respiratory rate and sent her for a chest x-ray. Thankfully things were changing for the better because her chest x-ray was normal. I finally felt we were going to stop getting bad news. On the 14th we had a follow-up appointment and her respiratory rate was much better, her color was better, and overall she looked good. We still had an issue with feeding, but the doctor increased the amount of calories per ounce and asked that we come back in a few days. On the 17th we returned to the doctor and Bailey was finally eating 15 oz of formula per day and she had gained 3 ounces. It was time to celebrate! He said we could wait 2 weeks before we had to come back. Finally, I can start my Down syndrome research and contact the early start program to get information on therapies. The following day Bailey had her 11:00pm feeding and went to sleep. We would wake her every 3 hours, but she refused to eat. The following morning we called the pediatrician and never received a return call. Finally, at noon, we decided to go to the ER. We took Aubrey to her grandparents house and arrived at the ER soon after. When we arrived they took Bailey back immediately. Within minutes she was surrounded by doctors and nurses. We were terrified. Was she even going to survive? All we could get from the doctor was that Bailey was very sick, but what was wrong? We were told earlier in the week about congestive heart failure, but this isn't what they described. Finally, we were told it was congestive heart failure. I guess I now know what to look for. Once stabilized, Bailey was flown to the children's hospital in Tampa. The doctors at the children's hospital said they would treat her with medication, and hopefully she'll be sent home in a few days. Bailey didn't recover as quickly as they hoped so on the 24th of May the doctors did a catheterization. It was then that they realized she also had another problem with her heart so the following day they did a PDA ligation. She has since been on a ventilator. We're not sure what will happen now, but we're hoping she will soon be removed from the ventilator, eating well, and going home.