Practicing to be an ECHO MD and catching up with other things

WOW-It has been too long since an update! I think events continued to happen and I would want to postpone updating the blog "until this weekend" but that never happened. We were just so busy. And that with us is a good busy- just living life!

We had a quick update this month with cardiology. Many of you know that Reagan wants to be an "echo doctor" when she grows up so she always wants to play "echo doctor" after her echo. Needless to say she is spoiled and she asks so sweetly that they all say of course! Her visit went well thank the good Lord!






I am going backwards in events that have happened so I will try to remember them all. We just had a huge school meeting with our public school and we are going to TRY it for Reagan this year. She BEGS to go to school with Cameron and she will begin kindergarten (again) in the fall. There are so many i's to dot and t's to cross before I am comfortable and they are too but we are going to TRY. Big step for momma for sure!

Cameron finished up with second grade last week. He had an amazing year with an amazing teacher and great group of friends. We are so proud of him! He also tried out and made Academy Soccer(travel) and he is super excited to begin in August.

Back to May. Cameron had his First Communion and it was such a sweet day. Nanna and grandaddy were in town to celebrate and several aunts, uncles, and cousins joined us for a brunch that morning. Cameron did a great job and was so handsome!





That same weekend was Reagan's last dance recital. Because dance gets more involved the older you are, we have decided to find new activities for next year. Any ideas? We were thinking Girl Scouts or an instrument to play. Who knows with Reagan- she usually has something in that great big mind of hers!





May also wrapped up her last day of kindergarten. It was a great year of socialization and learning for her. This small little half-day class has prepared her for "real" school next year!





April was busy with birthdays. Cameron's was first. He turned 8 this year and had a low key birthday after Reagan's party. He invited a couple of friends to Frankie's Fun Park and enjoyed laser tag, rides, games, pizza, and a big soccer cookie. I can't believe that fella is 8! It makes me sad.

The next birthday was Reagan's. She had her party at Lake Murray Gymnastics AGAIN this year. She had so much fun last year she wanted everything the same. She had a Coraline party, complete with buttons to decorate the black and purple table. Will she ever get out of this black phase? It was a fun party and she couldn't stop smiling and laughing. Isn't that all that matters?? She is so happy...makes me so happy too.






The last birthday was mine- yes the big 4-0! Not as bad as I thought it might be. I don't feel old yet- no gray hairs yet either! We met friends at a small place in Ballentine to hear a friends' band. Very chill and fun.

April ended with Easter. I love Easter mornings! We started with baskets and egg hunting, lunch at mom and dad's, and family time for the rest of the day. Unfortunately, we don't usually get to enjoy church on Easter. Everyone who doesn't go to church actually goes on Easter so we try and stay away from all of the germs.






We are looking forward to being lazy and enjoying summer! We are at the pool almost every day and will be at the beach soon. The children will enjoy a VBS or two, and Cameron has soccer camp in August. Other than that- we are free to play!

I will try and update more often. Hope everyone enjoys the summer!

God Bless!
Kelly

A Shark no more and Cath time

As many of you know, Reagan got 3 of her permanent teeth over a year ago- at only 4 years old. Her tiny baby teeth have wanted to stay too. We finally decided to have them taken out. Wednesday, we went to the dentist to get "gas", but Reagan had other ideas. She is a force to be reckonned with when she is scared (especially at the dentist). The nitrious did NOTHING for her. It was a horrible visit for her, mom, and the dentist but she did walk out with FOUR teeth out! No more two rows of teeth for her. As soon as she left, she was happy again and wanted to swing and play. Reagan has an amazing tollerance for pain- I just hate that she has to exercise that tollerance from time to time.

We leave this weekend for MUSC so she can have her yearly heart cath. This time they will not biopsy the heart only check out her heart and coronary arteries. I hate this procedure, but know it is necessary. I can't wait until it is over though! Monday afternoon can not come fast enough!

I haven't taken many pictures lately but here is one from Reagan's 100th day of school. She was very excited about this day.



I did take the video camera this week to Cameron's school for his Jump Rope for Heart Event. Reagan went with me and loved hanging with her big brother as he dedicated his jump to her. Too sweet!

Please pray that Reagan has a successful heart cath and that wonderfully beating heart is the best it can be!

Pictures from Heart Day

Okay, I have a few minutes to download some pictures from Heart Day. We left Friday for the Great Wolf Lodge. Uncle Paul was nice enough to stay at our house and watch Max. He had his puppy shots that morning and Reagan can not be around him for a few days because the shots he gets are live viruses.

She decked out in her heart and bones shirt (that she picked out)! We played all afternoon, then went to Carrabbas for dinner. Pizza for Reagan of course-she eats all of the cheese off of the top of the slices!

We went back to the room for cake and play time. She always gets a gift. She has been asking for a globe and has still not put it down. She even takes a nap with it!

Too funny.

There are a few pictures of Reagan at the waterpark. I couldn't catch Cameron in any pictures because he was too busy flying down the slides!

We had a great weekend!

Sorry for the long post about Heart Day- I guess I just started typing and some of the memories came out!

Happy Heart Day Reagan!

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!

Happy Birthday, Happy New Year, Happy Christmas- HAPPY!

Whew, is it just me or did Christmas just FLY by? I can't believe that the children are back in school!

Yesterday was Rick's birthday. Happy Birthday to my best friend- a great husband and father!

New Year's Eve was quiet and fun. We watched the football game and a neighbor's house, enjoyed a few kid-friendly fireworks, and the four of us enjoyed an intense game of Headbands. Okay, not really intense but fun. It is a kid's game- you wear a band around your forehead with a card on it that you can not see. Then you ask questions to everyone to try and figure out what you are (a carrot, bed, shoe, cat). The children had a blast and we did too. Reagan was determined to stay up until midnight, and she did! Cameron crashed as soon as the ball dropped, but Reagan kept going for another half hour. Yes, I do let my children stay up that late on New Year's Eve! Bad parent, I know. But if you have not enjoyed ice cream sundaes at midnight, you should try it. Once a year is fun!

Christmas-

We had such a great Christmas this year. This was the second Christmas out of SIX that Reagan was NOT sick!!! She really enjoyed opening presents this year. After all of Santa's presents were opened and enjoyed, Rick snuck out to pick up our gift to the children- A new puppy! I think Cameron almost passed out when he saw this little fella. Max the puppy was adopted from a shelter in Orangeburg. He was rescued in November from a trashcan! He is the sweetest little thing and we are glad to welcome our new addition! A quote from Cameron "Mom, I can't even explain how my heart feels-it is so full!" Too sweet. Reagan likes him, mostly from a distance, but she will talk to him from time to time and even held him yesterday. She is not a dog lover, but she really is warming up to Max.



















We hope everyone enjoyed a wonderful memory-making time with their families for Jesus' birthday! We are looking forward to a healthy 2011!

I will definitely be posting next week! We will be celebrating FIVE, yes FIVE years with Reagan's new heart! Whew, don't even get me started. Happy tears!