written by Joanna, Paisley’s mom
We had two children who came to us through the beauty of adoption, and we decided to add to our family in the Spring of 2014… when we saw Paisley’s little face, we fell in love with her, and we knew she was meant to be our daughter. We worked hard to complete our paperwork in record time, and she was almost two when we raced to bring her home that September, a very sick and fragile baby girl.
Paisley was born with a single ventricle, single atrium heart with a common valve, Double Outlet Right Ventricle, and her heart on the right side of her chest. She had surgery in China to place a Glenn shunt when she was five months old.
Just six weeks after we brought her home, Paisley was admitted to Children’s National Medical Center for her first heart cath, where three collaterals were closed off. We were hoping she would be ready for her next surgery, the Fontan, in the next few months, but we found out that the pressures in her Glenn were much too high. In January 2015 Paisley went into surgery to attempt to create two valves to try to lower the pressures.
For two months she was doing so well, but a few months later the valve repair failed, and our daughter developed something called Protein Losing Enteropathy…this made her not a candidate for the Fontan, and we needed to begin thinking of other options. PLE is a terrible disease, and the only cure is heart transplant.
Paisley spent most of that year in and out of the hospital, and she was listed for transplant in September of 2015 while she was inpatient having surgery to place a g-tube.
On November 22, 2015 we got the call that there was a heart for Paisley, and her beautiful new hero heart was placed in her chest early in the morning of the 23rd.
We can not imagine our lives without this little girl, and having her in our family has taught us that we are so much stronger than we thought we were.
We have learned more about love, and, most importantly, we have learned that hope is always worth the risk. We have learned that no matter what, love always wins.
She is four years old now, and we just celebrated eighteen months with her new heart!
Paisley received her Heart Hero Cape before her transplant, and it is still one of her favorite accessories. We have met so many heart families along the way, and having organizations like Heart Heroes has helped us tremendously, knowing that there are so many great support systems out there to encourage and fight with our little heroes.