Our daughter, Eden, was born on March 3rd of 2006. After a perfect, full-term pregnancy, she surprised us with having severe Pulmonary Hypertension (stiffened lungs) and Dilated Cardiomyopathy (an enlarged, weak heart). They believed the cause to be a premature closure of her Patent Ductus Arteriosis. She spent 5 weeks in the NICU and came home with a very good prognosis.

She was off oxygen and weaned off all meds by the time she was 8 mo. old. Her heart was even considered "resolved/healed" a couple of months later. We were thrilled! Unfortunately, throughout all of these early months she had a very difficult time eating and growing. We were given a variety of reasons and all of which were fairly benign. She has continually developed well, walking and talking early, but is very small for her age.

To our surprise, at a routine check-up with her cardiologist (at age 18 months), her heart was showing signs of worsening and she was diagnosed with Hypertrophic Cardiomyopathy (a thickened, weak heart). This was last August (2007), since that date, her heart has gotten progressively worse. After many rounds of genetic testing, they have still not found a cause for her condition; they just know that it is beyond healing itself and a heart transplant is her only option.

Eden was placed on the UNOS (United Network of Organ Sharing) heart transplant list at The Children's Hospital Heart Institute in Denver, CO on March 7th, 2008. We were given an estimated wait of 2 to 4 months, which is statistically determined by her priority (1B), blood-type, weight, and region.

Although a heart transplant may sound like a great fix for a child with no other health problems, it does come with many risks. Beyond the obvious, we have learned that getting a heart transplant more accurately means Eden will be trading one medical condition for another. She will most likely be giving up heart disease (assuming the donor does not have an unknown condition), but will be acquiring a lifetime of immune suppression - which can come with a variety of complications usually caused by the medications.

All in all, it is a difficult choice. But if you were to spend more than a minute with this amazing girl, there would be no question as to why we are choosing to try and keep her with us.

(PS... Happy Birthday, Grandma De...)