Zoe’s story – rewritten

Due to illness I missed my customary Heartiversary post. In lieu of that I’ve decided to post something I wrote for another site.

During my internet travels I came across these spiffy little bracelets called Bravelets. I’ve been eyeballing them for awhile ad finally broke down and bought 2. The premise behind these bravelets is pretty simple. They all say “Be Brave” on them, but they come in a multitude of different colors for different causes. Mine are lime green for organ donation. $10 from the purchase of each bravelet is donated to your cause.

After receiving and falling in love with mine, I decided to tell our story for their site. Most people here are familiar with Zoe’s story. Occasionally, someone new stumbles in and they go in search of who we are and we’re about. So, here is an updated version of Zoe’s story to mark the 6th anniversary of our miracle:

This isn’t really my story. It’s my daughter’s story, but I know it even better than she does.

My Zoe was born completely healthy. At some point she came in contact with a common virus and suffered congestive heart failure for the first time at 6 weeks. We were blessed and we didn’t lose her. She made what appeared to me a full recovery. We were told that the left side of her heart would always be slightly enlarged as a result of the damage done by the virus. At the age of 1 she was taken off all of her medications. We continued to see the cardiologist every year. At age 5, we were told that if she still looked this good the following year, she would be released from his care. She started taking dance lessons and playing soccer.

She started to get sick just before starting kindergarten. She would be very ill for a day and then completely healthy the next. After 4 months and many incorrect diagnoses from the pediatrician, we learned she was in congestive heart failure again. Apparently her recovery wasn’t as full as we thought. She went back into the regular care of the cardiologist and she was put back on all of her medications. After 9 months, the cardiologist wasn’t pleased with how she was recovering. The left side of her heart wasn’t shrinking like it did the first time and she was very tired all the time. He referred us to a friend & colleague of his who happened to a transplant doctor. He wanted us to consult with him just to see if there was anything he could do for Zoe. We met the transplant doctor for the first time in August 2008. In September, we were told that she was getting steadily worse instead of better and medicine wasn’t going to help her anymore. She would need a heart transplant and it would have to happen before Christmas is she was going to survive the year. I kept my game face on for Zoe’s benefit, but I felt like someone had just punched me in the stomach. I felt like I couldn’t breathe.

Zoe got steadily worse from that point. She was hospitalized on November 1, 2008. On November 5, 2008 she was intubated. I had explained the procedure the best I could to a 6 year old. Just before they put her under, she asked me if she was going to wake back up. I told her, of course she would. I walked out of the O.R. worried that my last words to my daughter may have been a lie. The drugs they were using to keep her alive got her the top spot on the National Transplant list. For three more weeks I watched my daughter struggle. We were beginning to discuss mechanical means of keeping her alive if a heart didn’t become available soon.

On December 1, 2008 we were told that we had a good prospective heart. They were running the preliminary tests and if it looked good they would send the team after it. Zoe was taken into the O.R. at 11pm that night. A little after 5am on December 2, 2008, my family & I watched the flight team bring Zoe’s new heart off the elevator. Zoe had a few minor issues post-transplant, but we just celebrated her 6th Heartiversarry.

At first glance, my Zoe appears to be a normal 12 year old girl. You would never guess that she’s gone through what she has. She dances, plays the cello, and even joined student council this year. She loves nail polish, purses, shoes, and boy bands. She’s not afraid to show off her scar or tell you her story. She tries to raise awareness for organ donation wherever she goes and she’s the bravest girl I know.