Joley Love

I was always told that I may not be able to have children or that it may be hard for me to get pregnant. I had endometriosis for many years and had surgery three times since I found out. I was devastated to think the one thing I wanted the most may not be possible. We prayed to God that one day I would be able to have a child that I could give birth to.

On July 9, 2005 I bought a pregnancy test and found the results astounding. We both wanted to make sure it was true so the next day I went to see the doctor because I had been bleeding also. He told me I was 5 weeks along and I was so happy that it was true.

Through the whole pregnancy the doctors and nurse kept telling me things sounded great. They were all happy for me knowing what I had already been through. I had my last ultrasound in October and she was not due until March 3. February 6, (Super Bowl night) I began to have contractions. After the game we went to the hospital. The doctor wanted to check to see where I was. The next afternoon our beautiful little angel would be born at 2:38pm. Joley Love is her name and she was 5lb, 3oz and 18.5in. It would not be until three days later that we would find out something was wrong.

The pediatrician wanted to be cautious and ordered an echocardiogram done to make sure her heart was okay. We were a little scared but hopeful. While the other doctors were doing this, the hospital was preparing for me to go home and Joley to stay one night because her weight had gone down to 4lb, 14oz. They said they wanted to make sure she would be all right to go home that next day.

Later that day they called in a specialist to view her pictures. We would then learn the harsh reality that something was truly wrong with our precious sweetheart. She had to be transported to UNC Children’s hospital in Chapel Hill. She would be in the CICU until she put on some weight before her surgery. The staff was wonderful and all the nurses loved to come see our beautiful baby girl. After she arrived we learned her surgery would be on Thursday the 17th. We were extremely nervous and knew the surgery was going to turn things around. The staff continued to tell us this would be like a roller coaster. We would have ups and downs, but people telling you this does not even compare to what parents really go through.

After 10 hours of surgery she would be placed in the PICU where the surgeon would stay with her all night. Thursday night was one of the many rough nights we would continue to have. She was the first infant at the hospital to be place on the ECMO machine, which helped her live longer. Things seemed to start to turn around after she got off ECMO. Two days later her fluids were still not coming off of her enough to close her chest. A clot would form where they were administering some of her drugs. The surgeon, Dr. Mill, would go back into her chest to clear it. He found a perforation of her intestines, which caused stool in her stomach area. Since she also had DiGeorge syndrome it would be too hard to fight the infection that would be in her system. The doctors would tell us there would be no way she would make it and ultimately it was our decision. We would hold her in our arms as the nurse began to disconnect her from her support.

Joley Love passed on March 3, 2005 at 5:11am. She will always be our angel. She fought hard and taught us more than most people could understand. Our beautiful little girl, Joley Love is now watching over us. We want to show her that we are going to make people aware of heart defects, which take too many babies lives each year