Thursday, July 17, 2008

4th of July

I am going back in time a bit with these pictures, but I wanted to be sure and share these from our friend, Nicole's, 4th of July BBQ (see Nicole and Kim above). Daily, I am torn as to whether or not I should be crying or laughing. Eden is clearly in a fragile state, health wise.... but most of the time it is not obvious. In fact, she enjoys being the life of the party and will do anything for a laugh. This night she was dancing, acting like a monkey, and hiding her favorite stuffed otter in her dress (see photos below). Is she a future Stand Up Comic or Zoo Keeper? I don't know, but this animal lover is hilarious. (Well, she'll probably be an Engineer if genetics are at all involved!).

...just a glimpse of our little entertainer's personality... wish we had the video camera running.

Fear not that life shall come to an end, but rather fear that it shall never have a beginning. ~John Henry Cardinal Newman

Monday, July 14, 2008

The Donor Dash

Thank you so much for the wonderful feedback on the blog. It was great to have so many of you receptive to this way of communication and info. sharing of Eden's updates. Now we just have to stay on top of it!

I received lots of questions from you and in thinking of how to respond, I realized I could do so by describing the event we attended this last weekend. Sunday was the 9th annual Donor Dash in Denver's Washington Park. It is a 5k run/walk to raise awareness of organ and tissue donation as well as honoring the families of both donor and recipients in the local area.

(...So, yes, I am still running - even getting Brian out more these days. Once we reached the four month mark in waiting for Eden's heart (which I believed to be the longest it would be), I stopped running every day and have started distance training instead.)

--See Eden running across the finish line.

We had a good time at the race. Since Brian was out of town, Eden and I recruited some friends as support to come run with us. We also ran into several other families that we have gotten to know during our weekly visits to TCH (The Children's Hospital) Heart Institute - our current home-away-from-home, as well as many staff members. As difficult as it was to hear the stories of other families, it was so great to feel as though we are not alone in this journey. Many people run in teams to recognize their loved one or with notes on their backs honoring their friend or family member's life. I already have a vision of our team name next year... Eden's Angels (or something to that effect!).

There are currently over 1700 people waiting for an organ in the states of Colorado and Wyoming alone, most of them for kidneys and livers. Hundreds die waiting every year as the average list time is 5 years (for adults). Wow! I realize that I now have a rare perspective, but it is still staggering to know how few people are willing to give their organs (and/or their children's).

--This year's team: Megan, Jeremy, Zander, Eden, Kera and Maribeth.

(...So, if you asked us if there was anything you could do? Think about your beliefs and willingness to donate your organs. And share it with your friends! The cutest slogan I read all day was "Recycle Yourself")

Yes, Eden has now been waiting longer then the estimated time we were given. Obviously, there is no true way of knowing when the surgery will happen or how long her current heart will last. If you asked about her placement on the list... she is a 1b. There are 3 priority levels, 1a, 1b, and 2. Her current health status is a double edged sword. On the one hand, we are so grateful for her strength and energy, however it is not enabling her to be bumped up in priority.

For now, we are still waiting; within an hour of the hospital at all times and cell phones in hand. We will be sure to let you know as soon as possible. Well, I will be a complete wreck, so Brian will have to take over for awhile.

Thanks again for all of your wonderful comments and support.

P.S. Turn up the volume on your computer... I've added music!

Friday, July 4, 2008

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...)