Friday, June 21, 2013

Abby's 2-year biopsy.......We couldn't be more grateful!

We are so grateful!  Abby's annual biopsy was perfect.  We decided to do a picture blog to show the events of the day.

Check in was at 7:30, we loved this because usually we are first case and check in is at 6:00.  But, even thought I didn't have to, I woke up early anyway, I was a little nervous.  Abby was nervous too, I've never seen her as grouchy as she was on Wednesday night.
Wide awake and driving to Primary Children's.

Check in at the surgery desk.  There are always so many kids in the waiting room that we wait in the hall.

Abby sporting her hospital digs, looking hot!

We always have to wait an hour and a half  before they take Abby to the cath lab, so after they take her weight and height and take her vitals, she always asks for warm blankets and then falls asleep while we're waiting.

The doctor that's performing the biopsy usually walks upstairs to our waiting room and talks to us before walking us down to the cath lab.  We thought it was going to be Dr. Gray today, but we were surprised when Dr. Martin walked in instead.  Abby had never had Dr. Martin before, but we loved her from the start!  Right when she came into Abby's room, we loved her!  She knew everything about Abby and knew exactly what to say to ease our nerves a little bit.  We walked down to the cath lab together, and as soon as Abby walked in, all of the cath nurses were so excited to see her!  They love Abby down there, they've really gotten to know us and we always spend a few minutes chatting with them before I have to give Abby her kiss and hug and leave her (this is the worst part of the entire process!  I hate it).  Abby always get to choose what flavor of gas to have as she's going to sleep, but today they chose pineapple for her to remind her of our trip to Hawaii!  Hopefully she was thinking about the beach as she was drifting off.

I walked down to the waiting room, and was so thankful to see my heart mom friend Shauntelle waiting for me!  Even though I told her not to come because she already spends so much time at that hospital, she came anyway, and I was grateful.  Abby's biopsy was supposed to take 90 minutes, and that's a long time to sit alone worrying.  Shauntelle helped make the time pass so much more quickly.  We definitely didn't run out of things to talk about!  No only that, but she also brought the much needed chocolate and diet coke.  Thanks for being there Shauntelle, that meant a lot to me!  Have I ever said how much I love my heart mom friends???  They are the greatest!
My hero for the day!

When the pager went off saying that Abby was done, was when I really got nervous. As soon as  I hear the pager, I have to walk down to the cath lab to meet the doctor to go over what they found.  Dr. Martin sat down with me and showed me the pictures and videos of Abby's heart and how amazing her coronary arteries look!  There is absolutely no narrowing, they are perfect.  Abby's heart pressures were all the same as her last cath too, this was a huge relief!  I loved how Dr. Marin took the time to really show me and explain everything, she's really good.  She said the entire cath/biopsy went perfectly, no problems.  Seeing Abby's heart looking so strong is always an amazing thing.  I so wish that I we knew Abby's donor family so that we could share the good news.  Maybe someday.

The next thing I had to do was to walk upstairs to the waiting room and wait until Abby had waken up enough for me to come back.  At the top of the stairs I ran into one of our heart transplant heroes, but I forgot to take a picture, duh!  Laura Hofheins received her transplant over 20 years ago and she's still going strong!  I loved that I saw her and got to talk to her!  She met me because she wanted to buy a book.  Thank you Laura!  Seeing Laura always gives me so much hope, she's an inspiration to us.  Then I ran into another one of my biggest heroes, Dr. Kaza, Abby's transplant surgeon.  We love Dr. Kaza, he's one of the greatest men that I've ever met.  We've spent a lot of time with Dr. Kaza talking about many things, and he's definitely a person that I look up to.  Not only is he brilliant, but he's also very spiritual and so completely caring.  From the very beginning he's had a soft spot in his heart for Abby, he always asks the transplant team how she's doing and he makes it a point to see us whenever we are there.  We appreciate this man so much, he is incredible.  A few weeks ago, I sent him a copy of "Abby's Miracle,"  and he was so complimentary and so thankful for it. I could tell that he really did read it, he'll always be a hero to us.  My next step was the waiting room.  Because of all the time we've spent there the past 2 years, I've become friends with ladies at the desk.  When I walked in, they were so excited to see me because I hadn't seen them in such a long time.  I had brought one of my books to give them, and as soon as they saw it and read the back cover, they were in tears.  They insisted on buying it and wouldn't accept it as a gift.  It's always touching to see how many people truly know Abby's story and care about her!

I finally got to go down and see Abby in the PACU.  Then they told us that she would have to be there, laying flat for 6 hours!!  That's a long time, we were expecting only 4 hours. She was extremely drowsy when I saw her, but she said she was feeling good.  She got a big smile on her face when I told her the initial results of her cath, and an even bigger smile when I told her that I had seen Dr. Kaza and he was asking how she was.  Then the waiting began.  I actually got Abby to give a thumbs up even though she was so incredibly tired!

We were excited because we got spend the next 6 hours in our own private room where it was quiet.  During her last annual biopsy we didn't get our room and we spent the day listening to a baby right next door crying.  It was awful.  This was like heaven.  Abby stayed awake on and off for the 6 hours and I fed her lots of slushies.  I set up my own little office and we had many visitors that knew we were there and wanted to stop in and see us and to buy a book.  Thank you to everyone that stopped by and for buying "Abby's Miracle."  Every book I sell helps me to try to get caught up on some of Abby's medical bills. The time actually went really fast.
When she could sit up a little bit, she ordered some food from the cafeteria.  I had to go downstairs and get one of their amazing sandwiches for me too!

I love this picture because even though Abby is sound asleep, she still has her phone in her hands!  Typical teenager.  I'm glad that Abby slept a lot, it made the time go faster for her too.  While we were waiting, the transplant team came up to to talk to us about her lab results.  Everything, and I mean EVERYTHING, looked amazing!  Her blood counts are up, her kidney function is good, she's not anemic anymore and her BNP, which is a measure of heart failure was only 29.  The lower the score, the better.  BNP levels below 100 indicate there is no heart failure, and Abby's was all the way down to 29.  SWEET!  The transplant team was thrilled with everything.  I talked to them about possibly taking Abby off a few of her meds, she's still on about 9 prescriptions, but we decided that because everything is where it needs to be, were not going to mess with anything right now.  It was good for us to just sit and chat with the transplant team for a while.  They're still trying to figure out if Britt and Brock need to have echoes done this year, or if they can wait for 5 years.  They're going to do some research and let me know next week.  After the transplant team left, Abby had to have an EKG,  this was just another part of the annual tests that needed to be run.

Then, finally, it was almost 4:30 and time to go down to clinic to for an echo and a chest x-ray.  Abby's echo was done by a lady that had a heart transplant when she was younger.  It had been 22 years since her first transplant, and 13 since her second.  It was fun for Abby to talk to her and ask her questions while she was getting her echo.  She was even asking why she decided to become an echo tech and what was involved.  I think Abby loves to talk to other recipients, she always has questions.  
Also while she was getting her echo, the transplant team and Dr. Tani came in to tell us that they had already gotten back the biopsy results and that it was "squeaky clean," meaning that it couldn't look better!  Best news of the day for sure!  Finally, Abby's appointment was over!!  But, we still had to make a couple of stops before we were ready to leave.  Our first visit was with a family that I had spent a lot of time messaging on Facebook and texting, but that we had never been able to meet.  Sara is another transplant friend.  She didn't receive her transplant too long ago and was still living away from home and family and trying to recover from her transplant.  It was fun to finally be able to meet Sara and her mom and to spend some time just sitting and chatting together.  They were so much fun to talk to, it was so comfortable and it felt like we had known each other for a really long time, even though we had just met.  We'll definitely keep in touch with them, it's good for Abby to have transplant friends.  that she can keep in touch with, and it's good for me to have other moms to talk to as well.  It's reassuring to talk to someone that knows what I'm going through, it makes me feel more confident in how I'm handling things and it makes me feel like less of an oddball!
Our last stop was up to the 3rd floor to visit with some of our nurse friends and to meet a little 2-year-old that is patiently waiting for his heart right now.  Christopher hasn't been listed for too long, but we're hoping that his heart comes fast!  Thank you Holly for buying a book, I hope that by reading our experience, it will make your next few months a little more peaceful! I know this isn't a great picture, Abby will probably kill me when she sees it, but it's the only one I got.

It was now 6:30 and Abby and I were completely beat.  I felt so emotionally drained and Abby was physically drained.  Her leg wound was sore and we needed some dinner and to go get some rest.  Thankfully, we didn't have to drive all the way back to St. George.  We stayed with my brother in Lehi for the night and left to come home this morning.  I am so lucky that my brothers both live up north, we'd be in trouble if we didn't have someone to stay with up there every time we have to go.  What a day!  What a long day, but what a good day, it was perfect!!!

While I was driving home this morning, and Abby was sleeping, I had some time to reflect on things.  I'm scared to share this out loud, but finally, after 2 years, I feel like things are really going to be okay for a while.  Every time I've said that before something has happened, but I don't think it's going to this time, I think it's our time to just "be" for a while.  I don't know how long, and I know that something will come up again at some point, that's just how it is when you're living with a child that has a new heart, but for now I'm going to let my guard down a little bit and just relax.  Unless something comes up, Abby doesn't have to go back to clinic until September!  That's a long time.  I also felt so incredibly grateful for so many things.  We are so lucky to have the transplant team that we do, they care so much about Abby and truly love her, we couldn't ask for better care anywhere in that hospital.  I'm also so grateful for all of you.  We had so many people send messages and texts and Facebook posts asking about Abby and letting us know that they were thinking about her and praying for her.  It's very humbling to have that happening on your behalf.  Thank you, we could feel your prayers.  I'm still so in awe about how our past 2 years have played out.  Everything has happened just how it was supposed to happen.  People have been put in our lives at the exact time we've needed them to be.  It's just been perfectly orchestrated.  I'm grateful I've had this experience because now I have a story to tell that can hopefully inspire other people and strengthen their faith too.  I can finally, honestly say that I am grateful for the events of the past 2 years.

July 12, Abby's second heart anniversary, is coming up fast.  It will be time for the 2nd annual Pay It Forward for Abby Day!!!  Think back to what you did last year, and start thinking about what more you can do for someone else on July 12th this year!!!  You've got about 3 weeks to figure it out.  Remember that we want to hear about it again it on our Pay it Forward for Abby Facebook page, email it to us (, text it to us, whatever.  But be sure you do something for someone else on July 12th to show your support and to Pay It Forward for Abby!!!

Tuesday, June 18, 2013

Abby's annual biopsy is now this Thursday!!!

After talking to the transplant team yesterday, we decided to move Abby's annual biopsy up to this Thursday instead of the 28th.  The past few days Abby has been showing some very subtle signs of rejection.  My gut feeling is that everything is okay, but it's always good to make sure.  I've had some people ask me about the procedure, so here's a quick rundown.  Since it's her annual biopsy, this procedure will be slightly different and more intense than most of the biopsies Abby has had.  Usually they go through her neck, but not for her annual one.  Abby will be put under anesthesia in the cath lab.  They'll then insert a small catheter through a blood vessel in her groin and advance it up through the aorta and into the heart.  Through this catheter they will measure the pressures in her heart and inject dye through the arteries to determine if Abby is showing any signs of coronary artery disease.  Coronary artery disease is very common in transplanted hearts and is one of the main reasons that transplant patients need to receive a second transplant.  They will also take a little piece of Abby's heart tissue to test for rejection.  During the cath they'll do a blood draw to test all of her med levels, kidney function, blood counts, etc.  If I remember right, the procedure takes about an hour and a half, but recovery is longer.  Abby will have to recover in the pacu for 3-4 hours.  She will have to lay still and flat the entire time.  After recovery, we will head to clinic for an echo and to talk about what they find.  For those of you that are familiar with Primary Children's, it will be Dr. Gray will be doing the procedure.  It seems like we haven't seen Dr. Gray for a long time, but we've always liked him in the past.  We will know most of the results before we leave the hospital on Thursday, but sometimes the biopsy results take a little longer.  It will be a long day for sure.    

 I think that both Abby and I are a little nervous, mostly because she hasn't had a biopsy for such a long time, her last one was in October and she was in rejection at that time.  Plus, it's always risky and scary when anesthesia is involved.  If everything looks perfect, which it will, Abby won't have to have another biopsy for a whole year, unless something comes up before then.  This is just one of the many things that comes with having a heart transplant.  The average transplanted heart only lasts 10-15 years.  I'm not sure what the statistics are about how many people end up needing a second heart, but I'm sure it's high.  Recently I've become a member of a Facebook group called Heart Transplant Survivors.   There are many members of this group that have had their hearts for over 20 years, it makes me very hopeful.  There are definitely lots of ups and downs along the way, no heart recipient ever denies that, but they can practically live a normal life.  I even know of a man that's had his new heart for almost 15 years and is participating in an Ironman triathlon next month in Idaho.  How cool is that?  Extremely inspiring, it's always good to hear stories like that.  So, Abby will do great during her biopsy and the results will be perfect, and then it will be back to living her life.  Things will be okay.

Since we are headed to Salt Lake a week earlier than planned, we won't be doing a book signing on the 28th.   Instead, we will be at Lone Peak Park in Sandy, 10140 South 700 East, tomorrow night (Wednesday) from 7:00-8:00 pm.  We would love to see you there!  The book is $16.  I will also bring some books with me to Primary Children's on Thursday for those of you that will be at the hospital that day.  If you can't make the book signing tomorrow, but are interested in getting a book, just email or Facebook me, we will meet up somehow!  My email is

Thanks for your thoughts and prayers for Abby this Thursday.  We can't wait until it's over.  I will post the results when I hear.  If you have a Team Doman shirt or wristband, Thursday will be the perfect day to wear them!  Thanks for sticking with us.

Thursday, June 13, 2013

Hawaii, our favorite place!

Hawaii, the greatest place in the world.  A little over 2 years ago we had a family trip planned, we were all going to go to Hawaii, both of my brothers and their families, my sister and her family, us and my mom and dad.  Our flights were booked and our house was ready.  We had been planning on it and looking forward to it since Christmas.  Then, Abby collapsed and school and our world changed.  Hawaii was no longer an option for us because were were waiting for her new heart.  Everyone else in the family went, except Abby, my dad, and I.  It was so hard.  I missed my kids so much.  But one of our greatest miracles happened the night Brittany and Brock got back to Salt Lake.  They got to our "blue house" at 6:00 pm on July 11th, we got the call for Abby's heart only 9 hours later.  I'm so grateful we were all together the day Abby got her heart.

Other than the flight over, Hawaii this year was perfect.  Abby's feet got so swollen on the plane about halfway through the flight to Hawaii, that she couldn't walk and was just bawling.  She was miserable.  It took a few days to get them back to their normal size again.  After talking to the transplant team, for the flight home, we made an adjustment to one of her medications, wrapped her feet and legs in Ace bandages, and made her move around a lot the entire flight and she did much better.  The rest of our trip was exactly what we wanted and needed.  We spent every day at beach.  We did lots of boogie boarding, body surfing, and just playing in the waves.  Boogie boarding never gets old.  We spent lots of time at Hukilau beach, which is one of our favorite places.  There was a house for sale right on our beach that I decided I wanted to buy (I am really loaded with extra cash right now:))  So, I called on it.  It's 5 bathrooms and 6 bedrooms, and only 3.2 million dollars.  So, if there's anyone out there that has an extra 3.19 million dollars and wants to go in on a house with me, just let me know!

I loved it when I found these pictures when I got home, it shows how much we love Hukilau Beach and it's fun to see how much my kids have changed the past 10 years.  The house we stayed in this year was right on the beach, we could walk out back door and the beach was right there, it was so perfect. This is what our backyard looked like for the week.  You know when you're doing relaxation techniques and they tell you to imagine your peaceful place???  This is mine and always has been.  There's just something about me and beach and the ocean, we belong together.
It was so hard to come home after only 1 week.  I told my kids that when I go through my mid-life crisis ( If I ever really get the chance), I might become a beach bum.  We really needed the time there.  I felt more relaxed and peaceful then I have in a long time, probably about 2 years, and I think my kids did too.  Thank you Mom and Dad for the trip, we loved every second of it.

We were home for a couple of days, and then I had to take Brock up north.  He had a visit with the BYU football coaching staff and a one-day camp at Weber State.  For anyone that doesn't know us, we are huge Utah fans and always have been.  Before we moved to St. George, we went to every football and basketball game every year since I was a kid.  Brock is the biggest fan too, he never misses a football game, so, going to BYU wasn't natural for us.  I could tell it was weird for Brock too, especially when he was walking up the stairs of the student-athlete building with all of the BYU paraphernalia in it, and looked down at me like he was gagging!  It was funny.  The meeting went well though, Brock gave them film and met all of the coaches.  I guess is they gave him a scholarship I would let him go there, but only for a good scholarship :)  It's been fun having him meet with lots of different coaches and having them show some interest in him.  They wish he was taller, I guess 6'3" isn't big enough, but we'll see what happens.  I'm so grateful he's got such great coaches that are helping him through this process because I don't have a clue what we're supposed to be doing.  Next week he goes to a Utah State camp, and the next is SUU.  I would be happy having him stay really close next year, like Dixie State, but I'm pretty sure Brock has his sights set a little higher.  It will be fun to see what he decides to do this next year, he'll have a lot of big choices to make.  A lot will depend on what kind of scholarship he's offered and to what school, and then he'll have to think about going on a mission as well.  For now, we'll just have to hope for a fun and injury free senior season!  Even if he doesn't get a scholarship anywhere, I still be just as proud of Brock, he's always been a great kid.

For the rest of us, we get to try to chill for the next 2 weeks, but then it's time for Abby's annual biopsy.  It's on June 28th, and honestly, I don't even want to do it.  I'm kind of to a place now that I'd rather not know if something is wrong.  But, we'll do it, because we should and we have to.  I know we need to do it, but it's not fun.  I'm already nervous, and I know that  the anxiety will continue for the next 2 weeks, but hopefully everything will look and good and we can just relax for the rest of our summer.

Here's more Hawaii pictures, a trip that I never want to forget.

Abby and Leah trying to catch crabs!

Mask on, area wiped down, we were ready to go!  Too bad we forgot about her swollen feet problem until it was too late.

Shave Ice and ice cream at Angel's.  The shave ice has ice cream in the bottom, cream poured over the top, and whipped cream on top of that.  YUMMY!

The crew at Turtle Bay brunch

Hanging at Hukilau
Abby and her cousins at Waimea Bay

We played hearts almost every night, Brock seemed to be the biggest loser!

I love these kids!

I love this place!

My hair is always bad in humidity, but I look so happy!
View from our back patio.
No even ask for coconuts!
No matter what how much sunscreen we used, we still got sunburned.

We bought Abby this shirt from a place called Lei Lei's at Turtle Bay because our last night she ordered the seafood scampi and it was huge, a plate filled with pasta, shrimp and scallops.  Somehow, Abby ate the whole thing, every last bite.  We were all in shock, I think the waitress was too.  I've never seen Abby do that before, ever!

Thanks mom and dad, best trip ever!

Please send good vibes and pray for good results on June 28th for Abby's biopsy!!  Also, remember you can buy Abby's Miracle on Amazon here: Abby's Miracle.  It's also available on Nook and Kindle now too.  We will be doing a book signing next week in St. George and on the 27th in Salt Lake.  I'll post more details later.  If you want me to mail you a book, I can do that too.  I sent one to one of our followers in Canada last week, and she just paid through my Paypal  Email me if you're interested.  Thank you to everyone that has purchased the book, every penny I earn helps me stay on top of Abby's medical bills.  I'm still working on getting on the Ellen Show, but it hasn't happened yet :)