Heart Birthdays are the best! I have so many emotions on the day before and day of the anniversary of Reagan's heart transplant. Friday was FIVE years!!! It feels like so long ago but we can remember almost every detail.
That week was so emotional. She was fighting for her life. Before going on ECMO, Reagan's heart had given out. Heart attack maybe? They never knew. It was a long night in Greenville but with a lot of prayers, she stablized enough to get back to MUSC. After a week of tests, they still had no idea what had happened.
Another week later, which was the week of Christmas (Reagan's first), Rick asked a nurse what a machine was called (we saw another kiddo hooked up). She said that is ECMO, and you don't ever want to be on that! Well, six days and four heart-stopping episodes later (literally- I mean CPR heart stopping), Reagan's last hope was ECMO. I remember the surgeon telling us that it was not a good idea, and because she had already had her second out of three surgeries for HLHS she was "wired" differently. It made ECMO a little harder. He tried to talk us out of it. We weren't going for it! She had fought for her life and came back four times-why should we stop fighting??
The surgery itself was complex for her and they had no idea if she would make it through. Of course she did. We were so happy to have this bridge. Ecmo would then be her heart and lungs for a while.
Going home late that night was sad. Rick's mother, my mom and dad, Rick and Cameron all met back at the Pink Hotel (Meeting Street Inn). We were expecting a visitor that night, so we left the hospital. Santa was coming for a sweet little two year old boy. We had to make sure Santa could get a Thomas train table and all of the other things that Santa had made (early, thank goodness) into that hotel room. We all stayed together, read The night before Christmas, and smiled as much as we could. Both of our children were alive, so we were thankful.
It took a week of preparation for Reagan to get on to the transplant list. I was in denial! I thought that Ecmo was giving her heart a much needed rest, and everything would be okay! She went on the transplant list on New Year's Eve. She was as stable as she could be. Every few days the machine would shut down, and the nurses and doctors frantically got it working again. They told us that she couldn't last very much longer.
After 22 days on Ecmo and 14 days on the transplant list, Rick got the "talk", letting him know that it was almost time to take her off of the machine. Her arms and legs were purple/black from the lack of oxygen ans her organs were shutting down.
I woke up on Friday the 13th excited. I am not sure if God spoke to me at night, but I woke up knowing that she would get her heart that day. I was sure of it! Morning turned into afternoon, then early evening. No heart yet. We all continued to pray! Little did I know that Taylor (Reagan's nurse) was busy all day preparing for a heart that was coming!
Rick took his mom and Cameron back to the house that we were staying at for a much needed break. I stayed with Reagan while a friend visited. At 5:20 on the 13th, all 4 of her doctors walked in and stared at me. I looked up at the monitor that I had been watching, knowing that nothing had changed. I looked back at them and begged for no more bad news. I remember the words
IT IS TIME!!!!!!
Time, I asked- time for what? Umm, come on Kelly- what have we been waiting for????
Whew! I could not screaming, crying, who knows!!! I said a quick prayer, ran to Reagan and told her that her new heart was here, and called Rick. After freaking him out he hopped in the car and the three of them flew across the "big bridge" as fast as they could! Talk about emotional!!!
The heart was offered to a child in Alabama first, but the surgeon was not available. It was destined for Reagan. After flying through tornados and bad thunderstorms, the heart arrived at 1am from Orlando.
It took around 20 people to walk her and all of her machines to the Operating Room.
The surgery started at 2am. Dr. Bradley had to "rewire" her back to the original state after taking out the old heart which took some time. Eleven hours later, the new heart was beating inside of her and she was done!
Well, not really done. Because she had been so sick, all of her organs took a really big hit. The day after surgery, two nurses and a doctor did not leave her beside for 7 more hours. They worked frantically to play catchup. They even brought us in at one point to give Reagan a pep talk. They asked us to let her know that this was it- she needed to fight as hard as she could. After that, the panic slowed and things started to calm.
It was three more months before she got out of the PCICU. LOTS and LOTS of issues had to be resolved.
I remember two weeks after the transplant and Cameron came into her room for a visit. SHE SMILED AT HIM! I knew then that everything would be okay.
Our lives have been taken on a different path. Our normal is not anyone else's normal. We are okay with that. We are so lucky to be alive-all four of us- and together.
GOD IS GOOD!
As for the 5th Heart Day celebration, it was amazing. We went to the Great Wolf lodge and the kids were in heaven. We were too. We had so much fun at the water parks, out to dinner, and having cake! We are so thankful to God that we can celebrate every heart birthday.
There are so many people that are on this journey with us and we are thankful. Friends, family, nurses, doctors, even people we don't know have been praying and still are.
We are thankful to Reagan's donor family. They gave us all our Reagan and they gave her life! I write letters to them at least 2 times a year, if not more. I have not heard from them but I will continue and maybe one day they will respond. If not, that is okay too.
Just a question, are you a donor??? Please consider. It really does save lives. IF you have not gotten onto the donor registy, please go to www.donatelifesc.org or www.every11minutes.org. You can register there and even see a picture of my hero- Reagan Michelle Potter!
Pictures to come, I promise!
