Julia, born 2008

Julia Michelle was born in the afternoon of December 3rd. We were so happy and excited. We waited with anticipation for the pediatrician to come release her so we could take her home and celebrate with all the family members waiting for us at our home. But that was not meant to be. Her physician entered the room and told us Julia would not be coming home with us that night. I was released but she had to stay for further testing due to a heart murmur. He tried to reassure me that many babies had these and chances were it was nothing to worry about. Tears in my eyes I was released to the waiting room. Her father took me home as the hospital would not let me stay past the waiting room with her due to the overflow of patients they had. I was at home for about an hour when I demanded that we go back and I would sleep in the waiting room. The next day a pediatric cardiologist was called in. When she came to talk to us we knew then it was more than just a murmur. Next thing we knew, our child was being put in an ambulance to be taken to a hospital three hours away that specialized in this kind of care. We were not allowed to ride in the ambulance with her. My mother in law drove us to the hospital. She was eventually released home only to return two months later for a full repair. By the time she had her surgery her oxygen level was only at 50% with full support. I was a new mother. I didn't understand the numbers. I only understood that alarms were going off constantly as her numbers continued to drop. And I knew that I was scared. Dr. Gus was the surgeon and amazing. She would not have made it another month. He gave her a repair. She spent another month in the hospital and was sent home. She was only delayed a little with her mobile skills. And she thrived and smiled and grew. She has been seeing cardiologists every six months to a year since she was born.

 

We recently learned that she is beginning to relapse. Through an MRI we learned her pulmonary valve is giving out. She will need a full replacement with a new valve by next year. Because she is asymptomatic at the moment they said she can wait until school is out this summer so she doesn't fall behind. Her father and I while no longer together still work with her so she understands her condition. We want her to understand that she needs to take care of herself and that while her little heart my be different we don't want it to hold her back from a real life. She figure skates and has tumbling classes. She loves to swim even though she can't do it for as long as her friends because her body temperature drops faster than theirs. But she is a beautiful and amazing little girl that has a whole community fighting for her.

 

Story by Julia’s mom, Amanda - West Virginia