Where was I 7 years ago today? How many people can accurately answer that question? Probably not many. That “not many” certainly does not include me. I can tell you exactly where I was and what I was doing.
After a very long night of waiting (12 hours to be exact) I was standing over my sleeping (medically assisted of course) daughter. She was just a tiny dot (at a mere 34 lbs.) in the giant bed filled with wires and tubes. I was watching the vent help her breath, as I’d done for nearly a month. This afternoon though, as I stood watching her, there was 1 very noticeable difference from all the days before…..her color. She wasn’t ghostly white with her lips tinted slightly blue. She was pink. Her lips were red. During that long night while I waited, this tiny girl received a second chance at life. This new heart beating strong inside her chest was the reason for this change.
I hadn’t heard her voice in nearly 30 days…27 to be exact. The last words I heard as she was wheeled into the O.R. to be placed on a vent were, “Am I going to wake up mommy?” It would still be another day before I heard that voice again and I could say, “See, I told you you’d wake up”. As I stood looking at her and half listening to the nurses and doctors, I knew that somewhere there was another mom like me possibly looking down over her baby too. The difference between us both separates and forever connects us. This other mom isn’t ever going to hear her child’s voice again. While we would fill our days with recovery, this mom would be trying to figure out to live her life without her child. Her first Christmas without him would a scant 23 days away. That hardly seemed fair to me. Would I change the outcome though? Not even for a second. Her pain brought my greatest joy. There will never be words to express my gratitude to this mom even though my heart feels it…..every single day.
Every year on (or around December 2nd) I have words of remembrance and gratitude, but this year is extra special and this fact didn’t dawn on me until fairly recently. This heartiversary marks a special milestone. Zoe, officially, has had her donated heart longer than the one she was born with. 7 years with a strong, healthy heart. She’s never known what that’s like….until now.
It’s been a long road from the tiny, pale, underweight 6 year old girl to this beautiful teen.
In typical Zoe style, you can’t shoot a bow without a tutu.
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The event was amazing as usual.
Even though this was the smallest team Zoe’s Heart has ever had at the event but with less than 24 hours before event, we not only met our fundraising goal, we exceeded it. We raised $1,080. I’d like to thank the following people for making that possible:
Zoe’s Aunt Cathy, her Dad and his fiance Andrea, Zoe’s Nana & Grandpa Joe (who drove at the speed of sound to make it to the event), Zoe’s Papa (my dad), Zoe’s Uncle Justin (my brother), Diana Jackson, Linda Stuchal, Allison Welsandt, Lori McAvoy, Bev Alt, Charlene Wood, Katy Neff, Debbie Dalehite, Tom Breno & the Strongsville Optimists Club (donated a whopping $500!), Kate Stiner (friend and mother of a donor – love you Kate!), Jamie Gregorski, LeeAnn Vasicek, and Audrey Benko.
Due to some technical difficulties, I’m currently unable to post a team picture (or any pictures) from the event. I’ll get some pictures up here as soon it’s fixed.
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Our favorite event is just 2 weeks away. Gift of Life Walk & Run.
Saturday, August 8th at Blossom Music Center. The event runs from 7:30 am -11:00 am. It is a rain or shine event and very family friendly. LifeBanc will have merchandise for sale this year so bring your wallet if you plan to attend!
Online registration ends Sunday, August 2nd at midnight. You can still register at the event if you miss the deadline. I will be picking up the teams packets early on Wednesday, August 5th. If you are registered before that, I will pick up your packet (t-shirt and what-not) that day. I’ll make arrangements to get it to you before Saturday.
Donations can continue to be made even after online registration closes. The registration is just for those people participating in the event.
To join the team or make a donation, please click here.
Zoe in The Green Chair
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Our favorite event is less than a month away! Team Zoe’s Heart is up and running. If you’re local and want to walk & run with us on August 8th, you can join the team here: Zoe’s Heart team homepage. You can also make donations to the team from that link.
Our team is significantly smaller this year from the get-go. 1/3 of the team is moving to Alaska in a few short weeks and another 1/3 of the team will be in California. It’s an amazing event and if you’ve never been, I highly suggest you join us. I have been informed that Radio Disney won’t be there this year but that the staff formed their own little group and they will be there instead. Radio Disney or no, it will still be an amazing event.
I’m proud to say that my son, Zoe’s brother, will be walk/running the 5k for the first time.
I’m crossing my fingers for better weather. Last year we opted out of our team picture (for the first time ever) because it was so rainy & cold & just generally miserable. Here’s hoping for sunny skies and a nice mild temperature!
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The less I post, the better things are. That means Zoe is healthy and busy.
We had a minor issue with the cold from hell earlier this year (part of last year too actually). Poor Zo got a cold right after Christmas which turned into a sinus infection. I do have to thank her for sharing that particular set of germs with me. The family that blows their noses together, stays together…. Some antibiotics helped move that along and she was better until a week before her annual biopsy was scheduled when her brother (the kids who NEVER gets sick) came home with a cold. He was sniffly for about a week…..Zoe just recently stopped coughing. Her biopsy got rescheduled since she was coughing and wheezy. That was a small matter of contention for me since I called transplant 2 days before and left a voice mail about her condition to see if we needed to reschedule. I got no response so we showed up at the hospital bright and early that Friday morning only to be sent home when anesthesia heard her cough. We rescheduled for late February and she was referred to pulmonary for a consult 2 weeks prior. The pulmonologist is leaning towards asthma mostly because it takes her about 4 weeks to kick a cold. Apparently that’s 2 weeks longer than it should take, even with her immune system suppressed. He gave her a week of steroids and a non-steroid inhaler to be used twice a day every day until we see him again. He also wants to her to get sick a couple of times before we see him again. (?!) That’s right. He WANTS her to get sick. If the use of the inhaler shortens the duration of her colds or keeps them from moving into her chest then he will feel confident saying yes, she has asthma. She’s gotten sick once so far. The sinus congestion came on fast and furious. She couldn’t sleep unless she was sitting up or she coughed all night long. This prompted a trip to the ER (her pediatrician’s office was far too busy to see Zoe – yes, she will be getting a new doctor) where she was given a Z-Pak and cough medicine with codeine. Within 2 weeks it was gone and she was no longer coughing. Was that the work of the antibiotics? The cough medicine? The inhaler? Who knows. She was better faster and that’s all I care about at this point. The poor girl coughed for 4 months straight. I’ll take 2 weeks.
Her biopsy went off without a hitch in February. She was still coughing a little, but not enough to warrant another reschedule. Her results were 1a and 0. Not perfect double 0’s like last time, but that’s close to perfect and we’ll take it. I’m also pleased to announce that Zoe has no more liquid medication. She’s been taking pills for a few years now, but her 3 time a week antibiotic remained liquid because the pills are larger. I talked her into trying them and she swallows them without issue. Hooray!
This school year has been a busy one for Zoe. Of course she still dances; tap, ballet, jazz, and she’s involved in the opener for recital again. Next year she begins pointe in addition to her regular ballet class. She’s gotten involved in student council and recently signed up for a drama club that meets after school. She also had the opportunity to try out for cheer leading. Naturally she made the team. While gymnastics isn’t her strongest suit (that’s one thing she’s never taken lessons for), she’s been dancing since she was 5 so I had no doubt about her ability to cheer. She also wants to sign-up to volunteer as an instructor at Safety Town this summer with the exception of the week she’s at camp.
We’ve also begun preliminary discussions with Make-A-Wish. This is a process that could take years so I imagine I’ll have more on this as time goes on.
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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.
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This was team Zoe’s Heart’s 5th year at the GOLWR. To date, we’ve raised $945 for LifeBanc. Our team was small this year and a few registered members didn’t show up on event day so we opted to skip the team picture this year. I did take a couple of photos before and during the Legacy of Life opening ceremony.
Donations can be still be made to the team through September 30th. Please go here to donate: http://lifebanc2014golwr.kintera.org/faf/search/searchTeamPart.asp?ievent=1100513&lis=1&kntae1100513=9D9CC410E10A437BB36816CB013C2B20&team=5977230&tlteam=0
I’d like to thank our team members for their donation and participation: The kids (Gabe, Zoe & Anna), Dawn & Joe Woodings (A.K.A Nana & Grandpa Joe), Mark & Sherry Snider (A.K.A Pappa & Grandma Sherry) & Mike Tanner.
I’d also like to thank our contributors: The Strongsville Optimist Club, Lindsey Gorning, Mike Tanner, Richard Cluck, Karin Rothig, Barb Hallenburg, Matt Wooster, Amy Gomes, Justin Snider, Nicole Snider.
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I received an email a couple days ago from a mom who was at the Cleveland Clinic waiting for her daughter, Hope’s, new perfect heart to arrive. The girls share a doctor and Hope’s mom stumbled upon my little blog by accident. She planned to pick her way through it during surgery & recovery. Hope was born with a congenital defect and had 2 surgeries before she was 6 months old.
I emailed this mom yesterday morning to see how Hope’s surgery went. While I waited for a reply I decided to see if I could find her on facebook. I found her, and was saddened to learn that Hope isn’t doing well. From what I’ve read, there’s been some bleeding, high blood pressure, swelling, seizure activity, and now her kidneys aren’t functioning well. Hope is currently on ECMO (life support) while Dr. B and the surgeons try to get Hope’s issues under control.
When I told Zoe about the email I received she asked if we could go meet her. Due to Hope’s setbacks, the visit will have to get put on hold for awhile. I did tell Zoe that Hope isn’t doing well right now. Having lost Aly & Mel, Zoe’s worried for Hope, but she knows that she’s in the best possible hands right now.
I’m not a praying woman, but Hope and her family are in my thoughts today. I’m crossing my fingers for her. Zoe has done what Zoe does best, she’s made a little something that I’m going to share here.
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I’ve got the team page for the Gift of Life Walk & Run all set up. I set the fundraising goal at $1,500 again because we fell a little short last year. If you join the team or want your donation to count towards the teams fundraising goal, please make sure you join or donate from the teams page! You can use the link here or search for the team on the GOLWR page on LifeBanc’s website.
The event is Saturday, August 9 at Blossom Music Center.
I’ve decided to try a booster campaign to sell t-shirts to help us with our fundraising goal.
I’ve set the booster campaign to end well before the event so that anyone who wants to buy a shirt AND join the team isn’t spending all that money at once. The t-shirts are $20. Adult registration for the event is $25 and registration for 13 & under is $15. If you are a team member and buy a shirt, this will be our team shirt on the day of the event. If you join the team, don’t buy a shirt, and have your old team shirt; please wear it to the event. If you join the team, don’t buy a shirt, and don’t have an old team shirt; that’s ok too. It would be awesome if you could buy and wear a plain white, pink, light green, or light blue shirt so we all look like we belong together!
I’ll post more details as we get closer. If you have any questions please don’t hesitate to email me.
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This past Saturday night, Zoe and I had the pleasure of attending a benefit for a fellow heart transplant recipient. Debbie Dalehite, who received her new heart last summer, graduated high school with my father. My dad’s class recently had their reunion, and while Debbie was not in attendance, she was running the show from her hospital bed. My dad learned about the benefit for Debbie’s medical expenses at the reunion and he thought Zoe and I would like to go and meet a fellow heart recipient. Zoe loves to meet people like her and we met not one, but 2 heart recipients that night.
We were introduced to a gentleman name Robby (I’m terrible with names so I hope I got that right) and his wife. Robby received his heart January 2009, one month after Zoe. He was in the hospital waiting at the same time as Zoe and he remembers following her recovery very closely. He told her, “I’ve known you since before you knew I knew you.” Zoe loved that. Robby and his wife also form a team for the LifeBanc Gift of Life Walk/Run. Perhaps some of my team will remember seeing this name, The Rowdy Hearts. The Rowdy Hearts raised $6,142.00 last year and had a team of 82 members. They were familiar with our little team and suggested we combine our teams for 2014! Robby suggested Zoe’s Rowdy Hearts as the new team name and we love it! They have a company sponsor that does their shirts and even threw in hats last year. We’ll get together as the even gets closer to work on a new team design. We’re hoping to be the biggest team there in 2014!
While at this benefit, Zoe took a walk around to check out the silent auction items up for bid. She’s a huge Vera Bradley fan and they had a back pack that they were auctioning off. I bought 20 tickets and gave Zoe half which she promptly dumped all of into the Vera Bradley bag. Debbie’s family, who was running the benefit, found out about Zoe and her desperate desire to procure this bag and they gave it to her. Oh, yes. JUST GAVE HER THE BACKPACK! I don’t think you can image how elated this little girl was to get this bag. She just sat at the table and hugged it. I’d like to give another special thanks to Debbie and her wonderful family for making this fellow heart girl so happy.
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