Birth Date - December 3, 2008
Diagnosis - Tetralogy of Fallot
Theme: Lilo & Stitch, Yellow or Pink Hibiscus Flowers or "Ohana"
Due Date: 6/1/18
Julia was diagnosed at 2 days old with Tetralogy of Fallot. I was a new mother and had no idea what was going on. All I knew was they were transporting Julia to another hospital and something was wrong with her heart. We followed an ambulance to a hospital three hours away to a part of West Virginia we had never been to. We knew Morgantown, WV for WVU football, but not their medical facilities. As the days passed the numbers on the monitor changed frequently and I had no idea what any of it really meant. I knew there were IVs all over my newborn daughter. I knew that doctors and nurses came and went all day and all night. After a couple of weeks we were allowed to go home with promises of more visits and tests to come.
At two months we took Julia in for what felt like a routine visit. She had gone to see a cardiologist every two weeks since we brought her home. Each visit they ran tests and then sent us home ... simply saying "not yet" for the impending surgery. This time we would not go home. This visit we received the news that we simply couldn't wait any longer. Her oxygen was dropping at a rapid rate and we had to rush her back to Morgantown, WV. Julia had her first open heart surgery just days away from Valentine's Day. Heart Day took on a whole new meaning that year. After close to two months in the hospital we went home. We continued follow up care with her cardiologist and pediatrician. Our family doctor began referring to her as his little miracle baby. With our permission he used her charts to teach his interns about the human heart and what can go wrong. They loved having her in the office.
For 8 years Julia lived with a patch over where the pulmonary valve should have been and a shunt in place so that her deoxygenated and oxygenated blood would not mix. She learned to ice skate. She loved skating. She was a little slower paced than the other kids. Her imagination could not be touched though. She loved to go to the pool, even though she wouldn't last more than an hour before she grew winded and was ready to go home. She lived like a normal kid.
At age 7 we went for an MRI. The results were not so good. We were told that her right ventricle had enlarged and the patch covering her pulmonary valve was not going to keep working the way they had hoped. She needed another surgery to prevent heart failure. She was growing more tired as time wore on. She was lasting less and less on the ice and in the water. The summer she was 8 they took her in and gave her an artificial valve made of pig and cow parts. They gave us fair warning that this wasn't the end. There was a good chance she would develop calcifications within 5 to 6 years and will need a new one within 10 years because bio heart valves were not life long. They deteriorated. But at the same time we did not run the higher risk of blood clots like the mechanical valves. She took 8 weeks to recover ... basically the whole summer. She yearned for her time at the pool.
Julia is now almost 6 months out from her last surgery. She is so strong and amazing. She was determined to do as much as she could for herself. I work in a local hospital and the strength I saw in her couldn't be touched by most of my grown patients. Her energy is amazing. She lasts hours at a time at the pool now. She told me she wants to join the swim team when she is older. Her skate team couldn't wait to have her back on the ice. Her first performance back she purposely did to "Fight Song" by Rachel Platten. Her smile is beautiful and I am so grateful at how incredibly she is has come through such a rough time in her life. Especially knowing that this isn't the end. We know that her heart will always be mended and never fixed. She will have to deal with this for her entire life. She has been an inspiration to our entire family.