Wednesday, February 29, 2012

Some memories have returned........

I've mentioned before that I'm a member of Intermountain Healing Hearts, which is a support group for families that are dealing with congenital heart defects and heart disease.  The women I've met through this group are unique, they've all gone through hard things...... different situations for each of them, but similar too, they are all strong, and most of them have seen their children face death-some have survived, some haven't.  Being a part of this group has been a good thing for me.  Every time I've posted a question, I've had amazing support, they know what I'm going through and can relate.  Even though I have only met a handful of these women face-to-face, I feel like I know each of them and their children personally.  Today, one of these mothers had to let her daugther go.  Those of you that are on facebook, saw that I shared a couple of links that this mom posted about her last few days and hours in this life with her baby.  It was hard to read, but it was also empowering to see the strength of this woman and to see her perspective.  As I was reading her posts, and thinking about what they were going through, it brought back some things that happened to us, some things that I had forgotten about.  There are big chunks of time that are missing from my memory of those first few days.  Like after we were on the lifeflight jet, and arrived at Primary Children's, I don't remember anything that happened for like 4 or 5 hours and there are many other times just like that......  It's crazy.  But a few things came back to me last night.

A few days after we had been at PCMC, I'm not sure how many, but we weren't in the ICU anymore, so probably around 5 or 6 days, I remember Dr. E. asking if she could talk to me out in the hall, not in Abby's room with her, just only me.  We walked down to the end of the hall by the window.  She looked right at me and said, "Michelle, I want to make sure that you understand how serious Abby's condition is.  She's not going to get any better until she gets her heart, in fact, she's going to get worse and it could happen fast."  I'm not sure what I said back or what else she said, all I remember thinking is that she's telling me that if Abby doesn't get a heart, she's going to die and it could happen fast.  It was scary, but I needed to be told.  Later that day, Brittany and Brock were deciding whether or not they wanted to stay in Salt Lake for a few more days, or head back to St. George.  I knew that I had to let them know the same thing Dr. E told me.  I remember sitting in the Rainbow Cafe with them, and telling them that Abby was sick, really, really sick and that she was going to get sicker and sicker until she got her heart.  The look on their faces was one of fear, sadness, and confusion, I think we were all still just in shock about everything.  I felt like a bum for laying it out like that, but I also knew that they needed to hear just like I needed to hear from Dr. E.  It was probably one of the hardest things I've ever done, something that now, I will never forget.   Now I know why I blocked it out for this long.  It made me think that maybe I don't really want to remember all of those hours and hours that are gone. 

Thinking about this conversation, reminded me of another that I had with the transplant team, probably near the end of June.  We had been waiting for about a month, but it felt like 100 months, but Abby was still listed as status 2, so I knew we weren't getting too close yet.  I remember just asking them how they knew that we weren't going to be sitting, waiting for Abby's heart a year from now?? How did they know that Abby's heart  couldn't sustain her for another 11 years?? It had worked for the first 11years of her life, how did they know it wouldn't work for 11 more??  Then I started wondering if maybe they had made a mistake, maybe she didn't really need a transplant, just a surgery would do.  I remember asking them to double check and just make sure.  I couldn't understand how everything was working a few days earlier, and then all of a sudden it just wasn't working anymore.  It didn't make sense, and to be honest, it still kind of doesn't!!  This was another time that Dr. E and Dr. M had to tell me straight up how bad things were.  That same day they showed me Abby's echo compared with a normal one-Brock's echo that he they had done right after we got Abby's diagnosis.  At that time it was obvious that Abby's heart was sick, it couldn't be fixed.....another one of those tough moments that I had forgotten about.

Maybe, probably, moments like these will keep coming back to me.  If you would have asked me yesterday, I would have said that I wished I remembered every moment, every single thing that happened from the time we arrived at the emergency room in St. George, until today.  But now, I'm not so sure.  Things have been blocked for a reason, I guess when I'm ready I'll remember more.  For now, I'm just going to remember to find joy in the little things, to remember that each day is a gift, and to remember that people and the relationships I have with them are really what matters.

Monday, February 20, 2012

Abby's first soccer game since her transplant!!!!

This weekend, once again, we were able to see how incredible Abby really is!  She played in her first soccer game, since last April, on Thursday night-only 7 months post transplant, and only 9 months since she collapsed and her heart stopped beating at school on May 18th !  Seeing her out running on the soccer field was something that I can't even describe.  She had the biggest smile on her face, and the look of true contentment and accomplishment.  It was inspiring, it was remarkable, it brought tears to the eyes of many of the people standing on the sidelines.  It was something that no one expected could happen so soon after transplant......except Abby anyway!! 

She played a game on Thursday night, another game Friday morning, then another game on Saturday.  By Saturday, her legs were so sore and tired, she's lost so much of her strength, but she wanted to play anyway!  Luckily, her awesome team, The Dominators, were so amazing that they were able to play on Monday in the semi-final game as well!  I need to give a big thank you to Coach Jim for allowing Abby to play in the tournament and to be a part of the team.  She hasn't been able to attend every practice, or even completely finish the practices she has attended, and we know she isn't in great shape (yet!!!) but letting her play this past weekend was emotionally just what she needed!  It reminded her of what she can be, so thank you Dominators, and thank you coaches for giving her that opportunity!

Monday, after her team lost in the semi-finals, I was able to see how determined Abby really is.  She came off the field with tears in her eyes, not because her team didn't win (although that's never fun!) but because she was mad, mad that she wasn't able to play more minutes in the game and mad because she's not as strong and fit as she wants to be right now.  I had to remind her that it's going to take some time and to be patient and to give herself a break!!  But, she didn't want to listen to me, she was extremely discouraged.   She hasn't done anything for 8 months, and she had a heart transplant, but she wants to be out there kicking the crap out of the soccer ball and leaving her mark on the field!  I told her that no one, not one person, even thought she would be out running around on a soccer field this soon!  For her to even be out there was an accomplishment......and she played great too!!  I've decided that maybe she's seen how hard I am on myself all the time, and maybe she's starting to follow my example....not good, I guess it's time to make some changes in how I treat myself so that Abby can do the same for herself. 

Overall,   it was a sweet weekend.  I was proud, extremely proud.  We were able to spend a lot of time with family and friends, and a lot of time laughing and having fun together!  Brock and Britt were there at the games to support Abby, and we had tons of fun on the sidelines.......nothing was better that when Britt knocked Brock over in his chair as he was holding a water bottle without the lid on, and as he was tipping over in slow motion, he dumped the water bottle all over his head!!!  Or when I told Britt I'd give her ten bucks to pinch the refs butt-she refused of course, or when we were making fun of Siri being Brock's new girlfriend, or when I kept telling the other team to throw the ball in to our team when they on the sidelines, or when we kept pulling Britt's chair out from under her, etc. etc.  Good times......good weekend.........Life is good.

Abby's fans!!!  Britt and Brock having some fun!

This one was our favorite!!  Abby did a sweet header that saved a goal!!!!! 

Wednesday, February 15, 2012

A totally perfect clinic and pics of clinic, 6-month anniversary, and Dixie Rebels

 Clinic couldn't havebeen better on Monday!  It was one of those clinic visits that we all sat around for a minute, trying to figure out what we missed!  We think the swelling came back because of Abby's stomach virus she's had.  Her body just hasn't been able to absorb the meds she's been taking to help with the swelling.  Abby is doing great off of the steroids, her cheeks are almost back to normal too!  We don't go back to Salt Lake until March 12th, one whole month.  That's the longest amount of time we've spent away from PCMC since May 18th!

Abby was given the okay to play in her soccer tournament in Mesquite this weekend, so tomorrow she'll back on the field.  I will take some video.  She's also going to be starting some cardiac rehab tomorrow at Dixie Regional.  She will be the only transplanted kid they've had there!  I'm sure she'll love working out with all of those old farts :)  She should be able to make some new friends!

Abby and I were going to take pictures of an entire clinic visit, just so everyone could see what happens there.....but, we would always get about half way through and then forget what we were doing!  It just gets to busy when docs and the transplant team come in to talk, so maybe next time we'll add pictures from that too!  But, here's some pics from clinic, Abby's 6-month heart anniverary, the Dixie Rebel's Soccer Team, and a couple of Brock and Britt too.  Enjoy!

Abby right when we got there, we always scedule the 7:00 am appointment so we can get on the road back to St. George before too late.  Notice her early morning hot chocolate from Starbucks......she's addicted, it's a clinic day habit now!!!

The echocardiogram....Abby likes this, she thinks it's relaxing and she gets to watch whatever movie she wants...usually tangled, I love the "Mother Knows Best" song!

Just getting vitals!  Height, weight, blood pressure, and temperature,

This week she had to have an EKG, but she doesn't always!

They also wanted a chest xray, Abby is waiting for them to call her back!

The dreaded blood draw!!!  This week they were trying to figure out Abby's swelling, so they drew a lot of blood!!!
Only 1 poke is always the best!

Abby's 6-month heart-aversary!!

The Dixie Rebel Women's Soccer Team came and visited Abby at our school
one day, it was cool!  Each player introduced themselves and talked a little bit about what
position they played.
They gave Abby a soccer ball that each of them wrote a little note on,
a schedule and a scarf.  We are planning on going to some of their games this coming season.

I had to throw these pictures in too!  Britt and Brock both
went to the preference dance at the school last week!  It was
Brock's first dance, he just turned 16 last week, and one of Britt's
last high school dances, she graduates in May!!!

Friday, February 10, 2012

A link to another heart mom's blog post

Monday is clinic day again, I'm just a little nervous for this one because it's the first time that Abby has been off of prednisone since her transplant, but I think things are going to be okay.  She been on and off lately, sometimes feeling good, sometimes not so good.  It was kind of weird a couple of days ago though.  After going about 6 weeks without any swelling in her ankles and feet, all of a sudden, after we went and watched play basketball, her ankles and feet were huge again!  The next morning, yesterday, she could barely walk because they hurt so bad and were still swollen.  But, by the afternoon, they were a little better....she even went to soccer practice!  She is so tough, she said they hurt, but she wanted to play anyway so she just toughed it out.  She really wants to play in the tournament next week in Mesquite, but we'll see how things go before we make that final decision.   

I came across a blog post from another heart mom that I thought was very well written and explains a little bit why I am how I am, so I'm linking the post below, I hope you take the time to read it. Her daughter's name just happens to be Abby too! 

Thanks Nicole for sharing, you did an excellent job of explaining!

Think about us Monday at clinic!  I'm thinking it's just going to be a routine, easy clinic day.  In and out with only good news!  I'll post again next week.

Monday, February 6, 2012

What am I grateful for???

Kind of strange timing for this post, but I needed to remember what I'm grateful for today....

-I'm grateful for the Dixie Rebels Women's Soccer Team.  The whole team and their coach came to visit Abby at school last week!  It was exactly what Abby needed.  Not only did they stop by the school, but they also brought her a signed soccer ball-each player wrote her a little note right on the ball!  Abby loved it, especially when they all introduced themselves and where they were from and what position they played.  Thank you for doing that for Abby, it reminded her that she has lots of people rooting for her still!

-  I'm grateful that Abby's stomach flu didn't last too long....yes, Abby did end up getting Britt's stomach flu, and so did Brock!  It's been lots of fun around our house lately....not :(  Lukily, Abby's was the most mild flu out of all of my kids.  She did miss more school again, and dropped a couple of pounds, but I think she's going to be okay.  I'm starting to wonder if she's going to catch every virus that comes our way!!  I guess, from I've heard, that's what we should expect this first year.  I guess having 12 bottles of Avagard, strategically placed around our house, isn't enough! 

-  I'm grateful for the teachers and staff at my school for helping me so much this year.  I will admit that teaching isn't easy right now.  There have been days when I've had to make phone calls to the transplant team or to pharmacies, etc.  and I've always had the help I've needed from the other teachers at the school.   They've helped with my sub plans and my lesson plans and the other essentials needed to teach, but they've especially been understanding and willing to listen to me on the rough days.  I'm especially grateful that they didn't let me quit my job last week when I was having a really bad day and had decided that I couldn't teach and be a heart transplant mom at the same time, it was too hard and too much and I was failing at both.  Thanks Sunrise Ridge for all of your support!

-    I'm grateful for my kids and for the close relationships we all have as a family.  I think back to the summer when we weren't even living together most of the time, and I just wonder how we ever survived.  We need each other, we are at our best and happiest when we are all together.  This is probably obvious to anyone that has spent time with us, when we are doing something together, or just hanging out together, we know how to have fun and enjoy each other.   There aren't many things I enjoy more than than just sitting back and watching my kids interact with each other, I will always be grateful for this bond.

-I'm grateful that we had 3 weeks off in between trips to Salt Lake this time, I really, really, really needed a break!  I've been feeling pretty crappy for about 2 weeks now.  I told myself I wasn't sick for the first week, but then it was just too obvious, I couldn't pretend anymore.  I was barely making it through the school day, and once I got home I would just crash on the couch until bedtime.  I'm feeling a little better now, but it's still lingering.  I decided I was either sick, or everything that's happened the past 6 months finally caught up with me and I needed the rest.  The funny thing is that it really doesn't matter if I'm sick or just tired-life goes on, teaching goes on, being a mom goes on.  It's one of those things where you just have to be strong and keep on going!

-I'm grateful for the Desert Hills High School basketball team.  Last week, during one of the biggest, most crowded games of the season, they did a fundraiser for Abby.  They gave us all of the money from the concessions, as well as money that they collected from the crowd, to use on Abby and her medical costs.  Thank you to everyone that donated, the money is needed and will be used for our trips to Salt Lake and for medication costs.  What a generous thing to do!  You should of seen the surprised look on our faces when we walked into the game and saw the collection jar with Abby's picture on the front!  It was awesome.  I'm also grateful for the basketball program at Desert Hills for the experience they've given Brock this season.  Going to watch Brock play basketball is one of the things that we always did before May 18th, and we need to continue to do as many of the things from "before" as we can, because there's so many new and different things now.  Doing the "before" things feels good and natural, not new and scary.  Plus, watching Brock play basketball is fun!

-  I'm grateful for my mom and dad.  They've really had to step up and help with Abby since I've had to go back to school.  Not only do they let her hang out with them on the days she isn't feeling well enough to go to school, but they've also taken her to get blood draws and to doctor's appointments here is St. George too!  They've come to our house in the mornings when Abby couldn't go to school so that she could get more sleep, and they've picked her up from school on the days when she doesn't make it through the entire school day.  I would be in a world of hurt without them and their help! Thanks Mom and Dad, you make it easier.

-I'm grateful for the lady I ran into at the oil change place last Saturday.  She's a mom of one of my student's from last year, I don't her know very well, but when I walked into the car place, she came up to me and gave me a big hug and told me that our story had inspired her.  I had forgotten that we still have people following us, and I was feeling a little bit alone in all of this, and seeing her and listening to her reminded me that there are many people out there that are still invested in our story and want to continue to watch Abby's progress.  It always feels good to know and to be reminded that even though this past 8 months has been hard, some good has come out of it. 

Every single time I've done a grateful list, I've felt better after.  It's been a rough couple of weeks.  I've learned that I don't do very well when Abby is sick, I think it just increases my stress level to a level that's a little too high!  I have a feeling that things are just going to be calm and peaceful for us for a sickness, no rejection, no swelling, no headaches!  One really amazing thing is that if I can get the okay from the transplant team on Monday at clinic, Abby is going to play in a soccer tournament over President's Day!  Can you believe it?  Only 6 months after a heart transplant, and she's going to back on the field playing soccer!!  The kid is truly a miracle.