When I was pregnant, they discovered that Jayden had a two vessel umbilical cord (supposed to be three), which is know to be linked with CHD. I had the level three ultrasounds every four weeks with in-depth heart scans. I was told that Jayden was absolutely healthy and not to worry. When she was born, she was a little gray, but they took her from me and she pinked up right away. A few hours later when the nurse listened to her heart, she had a funny look on her face. She said that she heard a murmur but that they were common, but she had never heard one like this before. The next nurse had the same reaction.

The next morning, my trusted pediatrician listened to her and said that he heard the murmur, but that it was probably a little hole in her heart and that it would close on its own in a day or two. We took Jayden home that night and I noticed that she was breathing at about 90 times a minute. I took her into the pediatrician the next morning and he said not to worry, her color was good and she was eating. A few days later I brought her in and I was still concerned because she was panting. The doctor said to still not worry, but that we would order an echo the following week, just in case. It was Thanksgiving weekend and I was trying to hold out until Tuesday for the echo, but I knew something was wrong. Finally on Sunday morning, I called the doctor in tears, fearful that I was having post partum depression and that he would tell me that I was crazy, but he asked me to meet him at the hospital.

Jayden was in congestive heart failure and would have died if I had not taken her in. The doctor said that he would send us to the local children's hospital. I asked about Stanford, but he said "This is just a little hole in the heart, they can handle this" . Thank God the local children's hospital was full and we had to go to Stanford. Stanford sent their own team of nurses to get Jayden and they were the ones that suggested that the doctor put Jayden on the drug that kept her alive. The doctor patted us on the back and assured us that we would be home in a week.

Jason and I were not allowed on the plane with Jayden, so we had to make the four hour drive. I was a wreck and Jason told me to pull it together because this was routine and everything was going to be fine. We were nowhere near prepared for the bomb that was placed on us. When we walked into Stanford, Jayden was being echoed. I had pulled it together by this time, when the cardiologist looked at us and said "Your daughter has very serious heart disease and we don't know what to do for her. We need to meet with our team in the morning to discuss it." We were devastated to say the least. Jason and I went into a small room where we screamed and cried like never before. I couldn't breathe and I felt faint. I tried to sleep, but I kept waking up to find that I was still in this nightmare.

The next day we were told that Jayden had aortic stenosis and coarctation of the aorta. They wanted to try to balloon open the aortic valve to avoid a replacement. That day, she had the procedure and we were told that it was successful. Now that I look back, I am not sure what made it successful, because after a few days she took a turn for the worse. We were told that she was not getting circulation to her feet and that she needed immediate surgery. Then she got an infection and they couldn't do surgery for a few more days. Finally a cardiologist sat us down and drew some pictures and we realized how bad it was. He told us that she had Shone's Complex, which basically means that the left side of the heart did not form correctly.

Jayden underwent an eight hour open heart surgery which consisted of PDA and ASD repair (hole closing), coarctation of the aorta repair (cutting off the pinched part of the artery and sewing it back together), cutting back some muscle and the Ross-Konno procedure (they threw out the aortic valve and replaced it with her pulmonary valve and put a prosthetic valve in place of the pulmonary valve and widened the aortic valve opening).

Jayden is doing great! Her mitral valve is deformed, but hopefully it will work ok. She will have to have her prosthetic valve replaced at major growth spurts. Jayden is doing beautifully, she is medication free and just started crawling!