Jillian

Jillian Alexandra was born on May 26, 2004. We had no prior knowledge of her heart defect so it was a surprise when she was taken away right after birth because she was blue. I had a placental abruption so they initially thought that she had lost blood. They transferred her to another hospital for a blood transfusion. The next day when her oxygen levels had not increased they performed and echo and found her to have 4 major heart defects. They immediately transferred her to University of California San Francisco Children's Hospital. There are no words to explain the shock we were in those first weeks at UCSF. We have two older children who are healthy so we never expected anything to be different with Jillian.

Going into surgery at 6 days old Jillian's surgeon, the wonderful and brilliant Dr. Karl, anticipated correcting all of her defects in one surgery. However, once he was inside he found that her mitral valve was straddling her ventricles, therefore making it impossible to patch her VSD. He then performed a modified Norwood and implanted a conduit from her heart to her lungs.

Seeing Jillian after surgery was heart-breaking. Her chest was left open for 7 days. She was on a ventilator for 3 weeks and once weaned, they discovered she had a paralyzed diaphragm ? which remains permanently paralyzed. They performed a plication, which did not help. She also had a collapsed lung and had to be on Portagen because of a nicked lymph node. Jillian also went through drug withdrawal and had to go on methadone. She never recovered as well as they wanted, she had continual desaturations, did not gain weight and was lethargic. They diagnosed a dynamic obstruction related to her conduit, so when she was exactly 3 months old, the earliest Dr. Karl would do it, he performed the bi-directional Glenn on her. She did so well after that surgery that she was discharged home exactly 7 days later.

Jillian has been home since August 26, 2004, exactly 3 months after she was born. She is doing great! She is in the 75th percentile for weight and height, everyone comments on her chubby cheeks. She is right on track developmentally. She is the happiest baby I know ? her disposition is so mellow and happy. She loves her big sisters and has started deep belly laughs whenever they are in the room. It is absolutely amazing. Thinking back to those weeks at UCSF, we were starting to lose hope and we were so devastated. But every doctor and nurse at UCSF kept telling us to be optimistic, they all believed in her and I am glad that they never gave up hope. It is anticipated that she will have a 3rd surgery, the Fontan, when she is around 3 or 4 years of age. She is the light of our lives and I look optimistically toward the future with my "Jilly girl".

September 2006 Update

Jillian has been doing great since she came home back in August of 2004. She has not had any more hospital stays and has been relatively healthy. She has only had minor colds with one case of strep throat and a few high fevers. She is developing normally and is the spunkiest 2 year old I know. To look at her you would think she is the healthiest little girl around.

All of her cardiology check ups have gone well. Her O2 levels hover in the low 80s and she sees her cardiologist about every 3 months. She is still being monitored to determine when her Fontan surgery will be. She has a new pediatric cardiologist in Sacramento, Dr. Hattendorf, who is just phenomenal?we love her!