Ashlyn's Story

From myspace on 9/22/08 www.myspace.com/car41183

I had Ashlyn on Thursday 9/18/08. She was just fine, eating well and alert. When we went to be released on Friday, they wanted to keep her because she was running a fever. They ran blood work on her and a culture to see what was causing the fever. She stayed in the room with me until I went home on Saturday.

Around 2:30 on Sunday morning (9/21), the NICU at the hospital I delivered at called to tell me that Ashlyn was having trouble breathing, they had put her on oxygen and taken a x-ray of her heart. The x-ray showed that her heart was enlarged and they wanted to send her to All Children's Hospital in St. Petersburg, FL. They are not qualified to deal with heart conditions there, it is a very small NICU and very new also.We went up there to release her and then went home to get some things to head to St. Pete. She made the trip very well, and once we arrived she was settled.

Then the waiting game started. We had to wait for an EKG of her heart to see what was wrong. Sunday afternoon we met with a cardiologist who explained that she has Double Outlet Right Ventricle heart defect. This occurs in 1 out of 100 births. Basically, the aorta and the pulmonary artery are reversed and the oxygenated and not oxygenated blood is mixing. After meeting with another cardiologist today (9/22) to discuss surgery and options, it was explained more. In the womb, there is a tube called a PDA or DA that connects the aorta and pulmonary artery and this is how the babies receive oxygen. At two to three days after birth, the tube closes down and the heart begins working normally. The surgery she needs would reverse the valves and close up a hole in her heart.

Monday (9/22) Ashlyn's oxygen tube was removed around 4:00 and as of a few minutes ago, it is still out and she is breathing on her own. If this continues, she will be taken off her PGE's(medicine to keep the PDA or DA tube open) and monitored. If her aorta does not narrow when the tube closes, her vitals remain good along with breathing and she eats well, she may come home to grow some more before surgery. The surgery would take place after one or two months of age. If the aorta narrows, she will have surgery next week.

Amazing, we have been very strong through this. There really isn't another choice, and she needs us to be there to listen and learn and support her. I guess what comforts me most is that I in no way caused this, they could not have picked it up in the ultrasounds I had (they only check that there are 4 chambers, which she has) and they are not rushing to do this as if it was an emergency. She is doing very well, and is very healthy otherwise. She would recover better is they waited to do the surgery until she is bigger and stronger.Right now, it's still just waiting but I feel confident that she is receiving the best possible care. She is in a great hospital and can overcome this obstacle in her life.

Thank you for all your thoughts and prayers, they are working!