Monday, December 26, 2011

Definitely a Christmas to remember

What a Christmas! We had an awesome day; in fact, we've had an awesome week. It's been so nice to be able to be home together as a family, without worrying about school, and work, and clinic visits, and everything else we've been worrying about the past 6 months. I've learned a lot this Christmas season, more than any other year, and I want to share some of those things.

-It doesn't matter how old your kids are, they still get just as excited to open presents. I thought we would all go crazy sitting through church. I know we were just supposed to sit and enjoy it and think about the true meaning of Christmas, which we did, but that doesn't mean that we had to sit still and be quiet. It was a beatiful meeting, but, it's a good thing it lasted only an hour because by the time it was 10:00, we were all ready to open presents!!

- Being off work makes me feel like I can be "off" everything, including going to Salt Lake. We have to go back for clinic on Thursday, but I really don't want to. With Abby's swollen feet and legs, they didn't want to wait more than 2 weeks to see her, so we have to go back already, it's only been 10 days. We were supposed to go get some labs drawn today to determine whether or not they want to do another cath/biopsy on Thursday, but the lab was closed so we'll be going tomorrow. Abby has been feeling okay, but every night she ends up sitting down, with her big swollen feet and legs up....they don't feel very good. Other than that, she's feeling great....but we still have to make the drive to Salt Lake on Wednesday.

-There's nothing better than watching Britt, Brock, and Abby play Just Dance 3......hahahaha

-When my family gets together for our annual Christmas party, we have lots of fun! Although everyone thinks they have to talk at the same time, especially while playing Encore, and the girls "let" the boys win, it was still fun for all! The talent show can't be beat, the kids' gift exchange is always a hit, the food is delicious, the chimes can't be forgotten, and having everyone there, together is the best! I can't wait for next year, I need to start practicing my talent now!

-People are placed in your life at the time when you need them most. Some people are only there for that one moment that you need them, and you never see them again; like the lady that recognized us at PCMC and told us how Abby's story has changed her life (just at that moment we were feeling discouraged), or the lady at the gym this morning that told me the difference I've made in her daughter's life since I've been back to teaching (when I've been trying to decide all week if I really can still teach school after everything we've been through). But, other people, because of the friendships we've formed, are going to be there forever. I'm in awe every time I think about all of the incredible people that have come into our lives in the past 6 months, these friendships are some of the greatest gifts we've been given this year.

-I always get 2nd place in Ticket to Ride. If you haven't played that board game, you's addicting, even when you can't quite pull off the win :)

-I love Christmas music and could listen to it all season, my kids don't and are sick of it already.

- I'm going to stop eating so much crap and I'm going to get back in shape again. I want to get back to participating in triathlons, but I've got a long way to go. I need to stop with the excuses that I'm so tired from everything, and just be consistent again. I learned this the hard I have an extra 5 pounds, on top of the other weight I gained since May, to get rid of.

-We received 2 of the greatest gifts this year, gifts that we will cherish for the rest of our lives. One of them was Abby's new heart. Even though I still don't know who the donor family is, I know that they are selfless, kind-hearted, thoughtful, and our forever heroes. We think of them and their generosity daily and I hope their Christmas, even with the loss they suffered July 12th, was still peaceful and filled with joy.

The second gift we received, one that I haven't talked much about, was the gift given to us by our Heavenly Father. It was the gift He gave to us last May when he let Abby make the decision to stay with Him or to come back to us. When we look at the facts of what happened to Abby on May 18th, she really shouldn't still be here, but He gave us the gift of letting her be with us for at least one more Christmas, and hopefully many, many more. We will receive this same gift every Christmas we "get" to have with Abby, and I do see it as a gift...every day she's with us is a gift, and for that I couldn't be more grateful. I can't even imagine Christmas without her, my mind won't even allow it, I'm bawling even going there a little bit!! I am more grateful for this gift than anything.....anything.

We will never have another Christmas quite like this one, we had lots to learn and it was filled with lots of I hope it's something we can hold onto for a long, long time. I hope all of you learned something this Christmas, and that it was filled with as much joy as we had!! How could it not have been our greatest Christmas ever??

Monday, December 19, 2011

"Time"-it's all relative, and another day at the cardiology clinic :)

We just survived another clinic Monday!!  It's always such a relief when we get in the car and we're on our way back to St. George.  It was actually fun today, because we got to have Britt with us and we passed out Team Doman shirts for Christmas presents to all of our friends in the blood lab, cardiology clinic, echo lab, and cath lab.  I told them all we expect to see them wearing them next time we're there :)

Abby's echo and labs looked good today.  But, since we had to change her blood pressure medicine back because of the migraines, now she's back to the swelling in her ankles and feet again.  It's no fun, sometimes she can't even walk on them, but we will take the swelling over the migraines any day!  So, we are increasing her blood pressure meds a little to see if that helps, but then we have to watch her blood pressure because it's been dropping pretty low.  We thought today would be the day that she could come down on her steroids a little more, but no luck.  Because of the swelling and Abby's lethargy lately, we're going to hold steady for a little longer.  They also drew some extra blood to make sure that abby doesn't have virus.  She's been a little tired lately, with stomach aches and small headaches, so they want to rule out mono and some other things.  I think that everything is great with her heart, and that she doesn't have a virus, but she's just having a hard time coming down off of the prednisone.  Abby has a really hard time coming off of any med, her body just doesn't react very well and it makes her feel crappy.  I also think that she's just getting tired of not feeling good.  She doesn't feel horrible, but she doesn't feel good either and that gets old fast!  Poor kid, it seems like if it's not one thing, it's another, and it's been dragging on for a long time.  We know that she's lucky to even be where she is today, but we can't wait until she feels great either.  They did an EKG to double check things, it looked great,  and then they told us to come back on the 29th.  That's only 10 days, but with her not feeling the greatest, they want to keep close tabs on her for a while.  So, another trip to Salt Lake next week, that's getting a little old too!! 

I was thinking about time this past week.  My sense of time has been off, way off since May 18th.  On January 12th, Abby will have had her new heart for half of a year, 6 months!  It seems like it's been a lot longer than 6 months!!  A kind of funny thing happened last week too.  I realized that we only waited for Abby's heart for a month and a half.......only a month and a half!!  It seemed way longer than that!!  I counted from May 18th-the day we were life flighted, to July 12th-the day of the transplant, like 20 times, I couldn't and still can't believe that it was less than 2 months!  Even though that amount of time seems so long, it also seems like it didn't even happen.  It feels like I'm still finishing teaching the school year from last year.  It seems like this school year is going on forever, but I've really only been teachiong 6 weeks, but it's because it just seems like I'm still finishing the 2010-2011 year.  And whenever I talk about last summer, it's actually the summer before, it's like this summer never happened.  It's hard to explain, and it really doesn't make any sense, but I'm hoping some of you that have gone through something like this, understand what I'm talking about.  Brittany and Brock are the same way, as far as "time" goes, we're all a little messed up still!!  Maybe we'll stay confused until we really have a summer, or maybe the past 6 months of our lives will always be kind of blurry and messed up. 

I did get myself the greatest Christmas present, and yes, I did open it too! I had our blog made into a book and I got it in the mail last week....and I love it!!  That's one thing that is helping us keep that part of our lives straight.  I love going through and reading all of the comments people have left, it's very humbling and inspiring when I see how much support and love we've had the past 6 months.  We always feel very blessed when we think about the people that we have in our lives, we know we have the support we need and we can turn to many different places when we need it, this is very comforting.  Thank you all for being a part of our story, we couldn't ask for anything more this Christmas!

Saturday, December 10, 2011

Just good news right now :)

Life is good.  We've had good things happening the past couple of weeks and it's Christmastime!

Clinic last Monday was too good to be true....I actually think that's how it's usually supposed to be, we've just had a long string of little problems.  We got to Primary Children's at 7:15 and we were out of there at 9:30!  I even made it home to St. George in time for our school faculty meeting at 2:00! Abby's echo looked good, her heart sounded good, and we had no worries!  We also heard some other good news this week........neither I or my ex-husband carry the cardiomyopathy gene, woohoo!!!  This means that both Brittany and Brock should be okay.  Talk about bringing my stress level down, hearing those results was like taking a big weight off my shoulders.  The gene was just a mutation that occurred in Abby, we will never know why, but at this point, that doesn't matter.

Some other good news is that now Abby has come off a little more on her steroids, she's been able to run again.  The other day, after her run, her facebook status said, "I love it when you can run farther than you think you can!"  I bet that was just the greatest feeling ever for her!  It's pretty inspiring to see Abby, less than 5 months out from her transplant, and Britt, 3 knee surgeries in the past year, out running.  I loved it when my brother-in-law, Rich, saw them out running together this week and commented, "New definition of awesome-when you see your 2 nieces, both out running and getting strong.  You made me smile and inspired me today!"  Britt and Abby-you're an inspiration to me too!  I have to brag for a minute and say that I also made it to the gym 4 times this past week!!!  That's right, Mama Doe, as my kids' friends call me, is finally getting stronger!!!

One other comment that I loved to hear this week, was as I was sitting at our ward relief society dinner, and we were all listening to an amazing pianist play a concert for us, and a friend of mine leaned over to me and said, "I just realized that I'm sitting here with you and your baby has a new heart.  You shouldn't even be here.  You could still be sitting in SLC, alone, waiting for the heart;  but we are here together, Abby is thriving, and you are here!!"  I couldn't help but smile, because that is so true, and I think about it all the time.  I can't even imagine being stuck up in our Sugarhouse house, with Brittany and Brock going to school in St. George, still waiting for the heart, during Christmastime!!  I personally know that if that were the case, I wouldn't be okay, I wouldn't have been able to do it!  I think we were all pushed exactly to our limit....and we survived.  I still go through moments, at least a couple times a day, that I just stop and think, "Holy cow, I can't believe that my daughter had a heart transplant!  That was "us" that this happened to.  We were on the news and in the newspaper, we are the family that everyone was doing fundraisers for, it was my daughter that almost didn't survive her heart stopping on May 18th!  This really happened."  It's a funny feeling, but everytime it happens, it reminds me to be so grateful for where we are today.

There's only 2 weeks until Christmas, I have only bought one present and it's for my niece, Leah.  Am I worried???  Nope!!  The one thing that I've learned this year, it only took me 40 years :), is that the presents really don't matter.  I know people say it all the time, but when you really, truly believe it, it's an awesome feeling.  I know my kids "get it" now too, I can tell by their Christmas lists this year, very small and  simple, they know what matters.  It took a near-tragedy, living apart for 5 months, and a miracle, but now they know.  Enjoy this Christmas season, it's the greatest time of the year and will be over way too soon! 

Friday, December 2, 2011

Abby's back in school and this is going to be the best Christmas ever!!!

Well, one whole week since the last post, that must mean that things are looking okay....and they are!!  Other than Abby's blood pressure hanging real low, she's been feeling pretty good this past week. I actually feel like maybe things are going to settle down little bit.....finally!!!  But from what I've heard, as soon as you start feeling like that, that is when the ground falls out from beneath you.  Let's hope it doesn't this time, we are due for some peace and quiet!!

Abby went back to school this past week.  Well, what we are calling "school" isn't exactly like a normal 7th grader's school.  She doesn't have a full schedule, she doesn't eat in the cafeteria, she sneaks out of class to take her meds twice a day, she leaves each class 5 minutes early so she's not out in the halls when all the other kids are, if someone is sick her class she leaves, she always wears her mask, and when she was so exhausted after Monday and Tuesday, she took Wednesday off.  It's a modified school, but it's the best we can do right now, and Abby is happy with it!  She has missed her friends and the social life so much.  She said that the first few days were weird, everyone was staring at her and swarming her, but now things are back to normal.  It feels good to have some things start to get back to normal.

Abby received an awesome gift from our new friends Patti and Wayne last week.  They arranged to have Abby Wombach, from the US Women's Soccer Team, personally autograph and write a note to Abby on their 2011 WNT Handbook.  Apparently, some of the players are now following the blog!!  If you're reading this....thank you!!  Abby has read and studied it over and over again.  Big thanks to Patti and Wayne too, what a great surprise!!!  These women are great heroes for Abby.

We go back up to Salt Lake on Sunday night for early clinic on Monday.  It seems like recently, everytime we've had clinic, they've found some problem....there's always something that isn't going right!  This causes me a lot of anxiety on clinic days.  What I really want to do is to learn to just expect things to be "off" "expect the unexpected."  I wish that I could train myself to just plan on things not being perfect, so that when things happen that aren't planned, I can handle them better.  I want to be able to just go with flow, keep it together, and not lose it!   This is what I wish I could do, but it's harder than it sounds.  I don't want to be pessimistic, having a positive, uplifting attitude is what I believe has helped Abby do as well as she has so far......but I do want to be realistic.  I hope that this will come with time and with more experience in dealing with these thing.  I just need to remember that :

“No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude and humility. All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God . . . and it is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire and which will make us more like our Father and Mother in heaven.”
Orson F. Whitney

I love Christmas!  When I was a kid, I was always the first one awake in our house and even since I've become the mom, I've carried that tradition.  I love Christmas music, I love giving gifts, I just love the season (except the cold anyway-thank goodness for electric blankets!) This Christmas is a little different.  There's not a lot of money for presents this year, we're trying to keep Abby away from big groups of people- which eliminates a lot of our Christmas traditions, the whole family is pretty much on a diet-which takes away lots of other Christmas fun, and we're all  just a little worn out-we just don't have as much energy as we have in the past.  But, we as a family know that we've already received the greatest Christmas present ever, the greatest miracle, we got our Christmas on July 12th, the day that Abby received her heart from a family that we don't even know, and  because of this amazing, selfless gift, we get to spend this Christmas season with Abby.......what more could we ever ask for????  This is going to be our best Chrismas ever.

Thursday, November 24, 2011

I have never been so thankful!!!

I've been debating whether or not to do a post all day, I've expressed what I'm thankul for many times in this blog; but, I have to do it, I am just too thankful today not to.

I am thankful.........

That our scare at clinic on Monday turned out to be nothing.  Abby's pulse has been really high lately, then Dr. Tawny heard a gallop while listening to heart and he also saw a slight change in her, we had to schedule another last minute biopsy.  On Monday, my gut instinct was telling me that Abby was still in mild rejection and that we would be spending the week at PCMC;  But, on Tuesday, the biopsy came back clear!!  For the first time through all of this, my instinct was wrong....and I am thankful for that!  Although we had to spend an extra day in Salt Lake, it's okay, I would always rather play it on the safe side when it comes to Abby's heart.  This leads me to the next thing I'm thankful for...

Abby's doctors and the transplant team.  I'm thankful that they're thorough and that I can always trust them with Abby, I know that they'll do whatever it takes to take care of Abby.  I trust them completely.  I'm also thankful that when they walk in the room, I know that they care for us, not just as doctors/patients, but as friends too. 

for all of our new "heart" friends.  Wow, we are so lucky to have other people that understand, that know just what we are going through and how we are feeling.  I love being able to talk through things with you and to know that you "get it."  Thank you for reassuring me, talking me through the hard times, validating my feelings, and making me feel normal.  There are many of you that I haven't even met, but I still know you're there and that you care about us, and I hope that someday I can meet you and thank you personally and give you a big hug!  I don't know where we would be without all of you. 

for all of you, our blog followers.    I don't think you realize how much strength it gives me when I read all the blog comments, all the facebook messages, the emails, the texts, and the phone calls.  Just knowing you're out there and that you still care about us is the most empowering thing.  I'm shocked we still have so many followers, but I'm so thankful that we do!  Thank you for sticking with us and for realizing that we are still in the heart of this trial we're going through, it's nowhere near being over.

that I know that if we can just hang in there a little longer, things will get easier and easier.  We are still in that crucial time, it's only been 4 months since the transplant! 

for Abby's donor family for making the decision that saved Abby's life.  I wish I knew who they were, especially today, so that I could thank them for that decision and show them how amazing Abby is.  I just think that this would bring them comfort.  I still pray that someday, when the time is right, we will meet them.

For my kids-Britt, Brock and Abby.  Everything about them is incredible.  Even going through the past 6 months they've held strong and never lost sight of who they are.  I'm always proud of them and often look to them as my example.  I love how they are so protective of each other and would do anything to support each other.  Being around them and watching them interact just makes people smile!  They are perfect to me.

I am mostly thankful that we were home-all of us, this Thanksgiving.  It's so hard to believe that only 6 months ago we were sitting up at Primary Chilren's Hospital listing Abby for a new heart, and look where we are now.....who would've thought that we'd be home, together by Thanksgiving??

I am thankful today......just so incredibly thankful.

*Now if I can just get motivated to get out our Christmas stuff and get the tree up!  Usually it's done by Thanksgiving,  but I feel like we just got everything put away and I'm not sure I want to create another mess that eventually I'm going to have to put away!!!   Maybe tomorrow, or Saturday, or maybe next week, or the week after..........

Sunday, November 20, 2011

Maybe it's okay.........

First of all, Brock's game was the best.  Even though they weren't able to win and pull off the upset, it was still an amazing experience.  Not only was he playing under the lights at Rice Eccles, but he was playing in a major blizzard....the flakes were as big as snowballs!  It will be a night we will always remember, and luckily he's still got two more years to play there for the state championship.  I hope his coaches realize how much he looks up to them and respects them, they've had a huge impact on his life.  Even though he's feeling totally beat up and sore right now, he's still always so sad when the season ends and football is over.  To be honest with you, it makes me a little sad too! 

We spent the whole weekend here in Salt Lake, and we haven't done that since we moved back home. Being here for a longer period of time made me realize something, something that I probably should have realized sooner, but it really hit me this weekend.......the last 6 months of my life have been hard, really, really, hard- we went through a major trauma.  Not only did we deal with Abby nearly dying at school on May 18th, but then we also had to move with short notice-no notice really, we spent the majority of our summer at PCMC, I had to leave Brittany and Brock in St. George and live away from them, Abby went through a major surgery, we had to learn to accept that someone had to lose their life in order to save Abby, I had to leave my job for 3 months, and now our lives are filled with trips to Salt Lake, medications, biopsies, migraines, etc. etc.  It's been hard.  Any one of these things, even all alone, would have been a trauma, but we've gotten to experience all of them, and in only a 6-month period.  Realizing this made me also realize that maybe it's okay that we're not back to 100% yet, it's really okay.

I think that my expectations for myself have been too high.  Maybe it's okay if I'm still struggling.... a lot, maybe it's okay if I still can't go into the school gym without falling part, maybe it's okay if I'm completely exhausted every night, maybe it's okay that I just need a little more time to recover and figure out this new life.  We've been through a lot, and we're still going through it, so maybe I shouldn't expect myself to be right back where I was before, maybe that's okay.

And maybe everyone else doesn't expect me to be either.  I've been trying so hard to make everyone believe that we are "okay" because I thought that they expected me to be by now, it has been 6 months....but, maybe people don't expect me to "be" anything!  Maybe I've been working so hard to make everyone believe I was okay, when really they were thinking, "How can they possibly be 'okay' after everything they've been through?" who have I been trying to fool, and why????

Maybe it's okay that I haven't gotten everything figured out at school yet or learned all of my students' names,  maybe it's okay that I haven't been able to get back to my 5 AM workouts, maybe it's okay if I still completely stress out every time Abby has clinic or takes her blood pressure or has a fast pulse, maybe it's okay if I still worry when I drop her off with her friends and I still can't leave her home alone, and maybe it's okay that when I hear sirens or see someone doing CPR on TV that it freaks me out a little's really okay.

Maybe it's okay if I'm not exactly the same Michelle that I was before, maybe it's even better now.  Maybe I can now be more understanding of other peoples' struggles and I have lots more compassion.  Maybe now I value my relationships with other people more than I ever have before and I take them more seriously than I used to,  I just know the difference a good friend and having someone to trust can make.   Maybe I don't laugh quite as often as I used to, but that doesn't mean I'm not as fun, things are just still a little heavier still, and that's okay. 

I just think I've been a little too hard on myself and it's time to give myself a break.  Maybe I'm wrong and these things really aren't okay..... maybe other people think it's time for me to get over it and move on and get back to normal, but I realized this weekend that I can't yet and I don't think I should have to.  We've been through a lot, and now I know that it's okay if I'm not completely okay.

Tuesday, November 15, 2011

Headache free for Abby and good things happening with Britt and Brock!!!

Just a quick update on a few things:

First, and most important, Abby has gone 2 nights in a row without having any migraines!!   For the past couple of weeks, last week being the worst, Abby had a migraine headache every night!  She would come in my room and tell me it had started, once this happened, nothing helped to make it better.  They were so bad that she couldn't lay down or even sit down without it being too painful.  Because of all of her other meds, we could only give her Tylenol and this wouldn't even touch them!  Sunday morning was the worst.  Abby came in at 3:00 AM, crying and saying that this was the worst one ever!  She said her eyes kept blacking out and they felt really swollen and that her hands and arms felt numb.  I immediately took her blood pressure and it was a whopping 165/125.  I decided it was time to call the transplant team.  They had me give her one of blood pressure meds that we had switched from a couple of weeks ago.  Right after Abby swallowed it, she started throwing up, but I was just hoping that she kept at least a little bit down.  We continued to watch her blood pressure, gave her another dose of Tylenol, and just prayed that it would get better.  Abby did not want to go into the emergency room to get some IV pain,meds, she said she'd rather suffer through it then go to the hospital.  So, as her mom, I felt completely helpless.  There was nothing I could do to make her feel better and this was hard....really hard.  Trying to help her through these migraines was one of the hardest things I've gone through so far because I couldn't do anything to ease her pain.  Not only that, but we were also living on only about 4 hours of sleep each night, and one thing I've learned through the past 5 months is that everything appears so much worse when you're tired.  Thankfully, Abby's migraine turned into just a headache, but it lasted through the entire day.  The poor kid couldn't even sit down and relax the whole day, but she still wouldn't go into the emergency room.  By about 7:00 Sunday night, I had just about reached my breaking point.  I was thinking that this was the thing that was finally going to put me over the edge.  I knew that I wouldn't be able to go teach school Monday without getting some had just been too many nights in a row.  I knew that Abby couldn't continue to live with this nightly pain and no sleep, it was too hard.  At this point, Abby said that maybe it was time she got a priesthood blessing.  I don't know why I hadn't thought about this sooner, my brain has just been to messed up to think clearly.  One of my good friends suggested a neighbor right down the street and luckily he was willing and able to come and give Abby a blessing.  That night was the first night in 2 weeks that Abby hadn't been awake with a headache.  She slept 13 hours without waking up once!  This means that I also got a good night sleep.  Monday night, the same thing, no headaches!  We've now made some medication changes which hopefully have helped to stop these migraines forever!!  There have been so many times through all of this that I've thought that I just can't take anymore, that I've really reached my max......but every single time, right when I'm teetering on that edge, things start to turn around and we get through it.  The thing that I wish I could understand is why do I  keep getting pushed right to that edge??  It just seems like maybe it's our turn to have things settle down a little bit, and for longer than just a day or two.  Why did this have to happen last week when it was also my first week back to teaching??   Why couldn't it have happened before I had to go back?   Why should Abby have to deal with any more pain?  Hasn't her poor body been through enough already?  It just seems to me like it's our turn to catch a break and to just have it easy for while.  I hate to complain, and I do know that there is a purpose for everything,  there is a  reason that we are going through these things, and some day I will know what that purpose is, but is it ever okay to just say, "Enough already!"  I hope so, because right now that's how I feel. on a lighter, more positive note, there are some good things happening around the Doman house.  I'm so proud of Britt.  After spending so much time in the hospital this summer, she made the decision that she's going to be a nurse.  This past week, she started volunteering in the emergency room!  She also signed up to get her CNA next semester so that after she graduates in May, she can get a "real" job while she's going to college to get her nursing degree.  It's exciting for me to see Britt finding the direction she wants her life to go in.  She will make a good nurse, I've already seen her nursing skills firsthand, she always takes perfect care of Abby.  I'm also proud of Brock!  As a sophmore, he's playing in a state championship football game this week at Rice Eccles Stadium.  Brock knows how to work hard and to be dedicated, this is really starting to pay off.  I can't wait to watch him run out of the tunnel at the University of Utah...I know that this is something that he's dreamed of his whole life!  I have the greatest kids in the world, I am grateful every day that they are who they are!!

I'll finish up with something that's a little scary for me.  Abby is going back to school on Friday.  This makes me nervous enough, not just because of all of the germs and sicknesses around, but remember what happened the last time she went to school on May 18th????  Here's something else that's a little freaky, the date on Friday is November 18th......hmmmmm, exactly 6 months since the last time she went to school, May 18th, when this whole ordeal began.  No matter how rational I try to be- trying to tell myself that I know that she will be okay, and that the date doesn't matter, and that she's just going to school and that I will be there too, and that it doesn't make sense to worry about it.....I still get really nervous even thinking about it.  Friday could be a tough day.  My head is telling me one thing, but my heart is telling me another.  But, it's just another thing that we will get through, another step we will take.  It might appear that we're just going over these little hurdles along the way, but when we step back a little, it's obvious to see that we've really come a long way.  Thanks for sticking with us and continuing to read our story!

Thursday, November 10, 2011

A post from Abby :D

Hey everyone! It's Abby. :) This is my second blog post since this has all started... As you know a couple weeks ago we were still in rejection, that means the Prednszone taper started over. That means big cheeks, achy legs, and worst of all- No school :( November 7th was going to be the day!!  But, my heart had other plans. So, the second trimester started without me again. We are kind of breaking the doctors rules:) I went to one class period today! Journalism. I need to be there for two reasons.
    1. I want to work on the yearbook. I think it will be fun! And if I'm behind I will have no idea what they are doing. Not good.
    2. I miss my friends. A lot. It's hard being on house arrest all the time... I need my friends! And the people aren't sure how to act around me still so this will be good to show them I'm just normal:)

It was a great day today. I got ALL my work done in school! Well, for one week anyway. I will probably go about two or three days a week and just get it done then. I sit in a classroom playing soft music and work. All day. It's great. :) Good news- November 19th is when I can go back! Which is weird becuase, well, thats a Saturday... Those tricky doctors! So that Friday I will go (I will still have to wear my mask until flu seasons over... But that's okay) then that next Monday we have clinic at Primary Children's again. Great. Then Tuesday I will go to school, then it's Thanksgiving break! They think they're so smart, which they are, I get one day of school before Thanksgiving! 

So we don't have to go to Salt Lake for two weeks!  Brocks semi-final football game WAS going to be up there, but the people in charge changed it to Dixie State! BEST. NEWS. EVER. No eight hour drive in one day!! Clinic last Monday went well. We drove up that morning at about 4:00 a.m. (I slept the whole way!) and got there exactly at 9. My mom's the bomb at being on time. She's NEVER late! We went in and talked to our secretary friends in the cardiology department, got my blood drawn ( Have to use the hands.. Arms are too worn out!) They got it on their first try! Almost every time since my new heart they've gotten it first try, I love this heart! After getting my sparkly bandaid we walked back into the cardiology department to wait for the echo people to come get me. They took my blood pressure, pulse, temperature, weight, height, all that jazz then got to go in our favorite room that we somehow ALWAYS get stuck in- The fetal echo room. We usually like it in here, its got a nice couch and carpet! A new lady did my echo this time.. She pushed really hard on my ribs and it hurt. ( They are still tender from surgery) They also did my neck which they have never done before. ??? Oh well, I watch Tangled and quoted every word. :) My mom hates it when I do that. Maya, my heart friend was there, we didn't talk much,  but we do know they might have to get another ablation surgery.. Please pray for their family!  We went back into our little room and I colored on they back of the little papers they have there for little kids to color on. Sometimes I write stories about tacos and stuff.. :) I get bored! The docs came in, listened to my heart, and sent us home! It went by so fast it seemed like we forgot something, but we didn't. I hate that feeling. We have to go in to Dixie Regional on Monday to get lab work but thats all:) NBD.

Some bad news-- Headaches. Ouch! I've been getting REALLY bad headaches this week. Migraines even. I can't take most pain meds because of all of my other meds, so, only Tylenol. Yeah  I know, not good. One night it lasted from about 11 at night to 1 in the morning. It's even worse because you can't do anything about it! We've tried EVERYTHING: Tylenol, warm blankets, heating pad on my head, natural oils, no sound, no lights, sitting down, standing up, wash cloth on the face, and more. Only when we were desperate to do ALL of those things did it help enough for me to fall asleep until morning. One of my mom's friends brought over these oils that I think helped. Last night I didn't get one!! Yay! So hopefully I won't have any more. The doctors have no idea what it is... It might just be from the Prednisone taper, MiaBella's family said she has to go down a quater pill a time or she gets headaches... The tapers already slow, only 1/2 a pill a day, I can't imagine it being slower!
Well, after we get these headaches figured out everything will be great:)

 I'm glad I get to go to school and act like a normal kid again! It will be hard when I have to go back full time but I'll get used to it. Hanging out with Grandma and Grandpa is great(: But I like kids my age too.... I'm thankful for everything you guys are doing!! We have Team Doman wristbands we are going to sell when I get back to school. $1! We have tons.

Monday, November 7, 2011


Fortunately, I woke up at 3:30 AM and couldn't go back to sleep.  So I decided we should just get up and get an even earlier start on the day.  I even thought maybe we could get in and out of clinic really fast and get back to St. George early!

Unfortunately, there was snow and a blizzard from 10 miles before Cedar City all the way to Nephi.  So we didn't get to clinic early.  The drive was horrible, I white-knuckled it the whole way.  I'll even admit that for a minute, only a minute, I thought to myself, "Maybe I can't do this.  I don't know if I can wake up at 3:00, drive for 5 hours in snow,  be tense at clinic and waiting for what the transplant team has to say, then hop in the car and drive back in snow again, and then try to wake up tomorrow and teach school all day."  The doubts were flying!

Fortunately, we pulled in the parking lot of Primary Children's right when my car clock turned to 9:00-exactly on time for our appointment.  My thoughts quickly turned to, "We are freaking amazing!  Snow, blizzards, traffic, 300 miles...... and we still make it exactly on time!" I couldn't stop bragging, I definitely felt amazing.

Unfortunately, I really was the only one that thought it was THAT amazing.

Fortunately, clinic went well.  Abby's echo looked awesome.  We are going to continue on the prednisone taper and hope that the rejection has cleared up.  She hasn't had as much swelling in her arms and legs this week since she started on her new blood pressure medication, and her pulse has also gone back to normal.

Unfortunately, Abby has been having some horrible headaches this past week.....possibly migraines even.  She didn't have headaches before the transplant, but has just started them this past week.  She said to think of your very worst headache and times it by 4 and it will almost be how bad her headaches are. She's been pretty miserable.

Fortunately, we talked with the transplant team about many possible reasons and decided that her prograff level was probably too high, and when we got the results later in the day, we would just adjust her tacro med (anti-rejection medication) and her headaches would be gone.

Unfortunately, her prograff level actually came back too that isn't it.  We are going to try some other things now.  Possibly it's the large steroid dose, or maybe she's becoming too dehydrated.  We'll figure it out.

Fortunately, we don't have to go back to clinic next Monday.......we have a week off!  We just have to make a trip to Dixie Regional on Monday to get another Prograff level.

Unfortuantely, we have to go to Salt Lake again this week anyway because Brock's football team, Desert Hills High, is playing in the semi-finals at Rice Eccles Stadium Friday night at 6:30.

Fortuantely, I love watching Brock play football!!

Unfortunately, Britt has to be back for her Sadie's date at 9:00 on Saturday morning.  So that means we'll be having another very early morning drive, this time on Satuday morning.

Fortunately, while I was typing this, Britt told me that there's a spirit bus and she can ride it to the game and back!!! 

Unfortunately, Britt won't let Abby and I be chaperones and catch a free ride up to Salt Lake and back!

Fortunately, Abby is doing better, she's going to be able to go to school as soon as she come down more on her steroids, and we don't think she is in rejection any more!! And I kept running into this quote throughout the week, so I decided I better include it in the blog.  There was a reason it kept popping up to me, I needed to be reminded.

“No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude and humility. All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God . . . and it is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire and which will make us more like our Father and Mother in heaven.”
Orson F. Whitney

Monday, October 31, 2011

steroids.....from 5 mg/day to 55 mg/day.........not the best Halloween ever!!

Definitely not our favorite Halloween ever!  It was fun to see lots of the docs and nurses dressed up at the hospital however; In fact, Buzz Lightyear put Abby's IV in this morning! 

It all started okay, fabulous really.  I was extremely nervous to hear the results of her heart cath because she's had a lot of swelling in her feet and legs this week.  One night last weekend, her ankles were the size of softballs!! She's been walking around with sore feet all week. I thought it had to be because her pulmonary hypertension was flaring up again and I was ready to hear Dr. Day say her levels were too high.....but, he said that everything looked good, the numbers were the same as last week!  Next stop was her echo.......and the results: things looked awesome, much better than last week and much, much better than 2 weeks ago!  I was starting to feel really good about things, I figured all my worrying this past week was for nothing.  Next stop, talk to the transplant team.  They thought everything looked good, and her heart sounded really good too, but then we started talking about Abby's swelling, her lethargy, her headaches, and just feeling kind of blah lately.  This was when they started worrying about the results of the biopsy, which we wouldn't get back until 5:00.  We made 2 plans, one for if the biopsy came back clean, one for if it didn't.  We hopped in the car to drive home, knowing that we might have to go back to Salt Lake tomorrow if the biopsy wasn't good and then spend a few days in PCMC getting IV steroids.....the waiting game began!

I got the call at 5:30, just as we were pulling into the driveway.  Abby's biopsy results looked the same as 2 weeks ago, not worse....but not better either.  She's still in minor rejection.

The good news: We don't have to go back to Salt Lake tomorrow.  This would have been bad because tomorrow is the first day I'm supposed to report back to school.  I don't start with my classes, but I have to be at the school.  This was a relief to me, I was having a hard time thinking of an alternate plan.

The bad news:  We have to increase her Prednisone steroids to 27.5 mg twice a day....almost as much as she was on right after the transplant!  Right now she's only taking 2.5 mg twice a day, so this is quite an increase!  This really stinks for Abby because she'll be back to having puffy cheeks, which is really hard for a 12-year-old girl, and it's taken so long to get them back to normal.   But the worst part about it is that she probably won't be able to go back to school next week.  This devastated her the very most.  She's been counting the days until she was able to go spend the day with her friends.  Ever since she heard the news there's been lots and lots of tears, and that's really hard to see because Abby has been so stoic through everything so far.  It just broke my heart to see her so sad and discouraged.  We're just hoping that this does the trick and the rejection is gone next week and the prednisone taper will happen fast so she can get back to school.
The other bad news: We have to go back up again next Monday.  This is going to be real tricky because that's my first day with my new classes.  I'm not sure how that's going to work, but it's already causing me a bunch of anxiety!  I have to take Abby, but I also have to be to school, hmmmm..... can't do both.  It's a no-win situation for me.  I was planning on this happening a lot, but just not the first day.  Just another thing to stress about I guess.

So, things aren't great.  They definitely could be worse, much worse, so we are so grateful for where Abby is right now and all of the progress that she's made, but we always wish that things were perfect too.  I keep telling myself to expect bumps in the road, but I also keep believing that we won't have any....this is Abby we're talking about and if you've heard our story up to this point, you know that everything happens just how it's supposed to for us!  I know we'll work through this, things will work out, it's okay to be a little sad and anxious sometimes, as long as we can bounce back and keep our chins up, this is just a bump in the road and we will get through it.

Friday, October 28, 2011

Another "Grateful List".......sometimes it's just needed!!!!

I just got the call from PCMC and abby's cath/biopsy is scheduled for 8:30 on Monday morning.  I hate to admit it, but I think I have a serious case of  the "I'm getting really tired of all of this and feeling sorry for myself" blues!  Maybe it's all the driving back and forth, or maybe because I have to try to go back to work next week, or maybe I'm just tired, but hopefully if I make another grateful list, I'll snap out of it.

Things I'm grateful for:

     -Football.  Sounds funny, I know, but there are lots of reasons I'm grateful for football.  First, because it's given Brock a focus through all of this.  I think it's truly helped him to cope.  He's had something else to think about other than just Abby and how she's doing.  Second, it's one of the "normal" things that we get to do.  I used to go to my kids games all the time......Now that Abby isn't playing yet, and Britt is still recovering, I'm down to just being able to watch Brock.  I miss going to games.  Desert Hills needs to win tonight so that they can continue on in the playoffs and so we can enjoy this "normal" thing a little longer.   Plus, Brock is so fun to watch.....who wouldn't be grateful for football when they get to be Brock's mom!
     -My job.  Although I'm a nervous wreck thinking about going back and starting in the middle of the school year while my brain is still kind of a jumbled mess, I am grateful for my job as a teacher.  I have always loved to teach school, it's just what I do.  I also love where I teach, Sunrise Ridge is a great place to be.  The support I've received from my teacher friends, both at my current school and my past schools and teachers from schools that I haven't taught at has been incredible.  I think if I can make it through the first 2 weeks, things will be okay.  It does feel like I should be going back to the classes I had last year because I never officially finished the year with them.  It's just going to be weird to be starting 1/3 of the way through the school year......definitely a new experience.  I'm grateful that this happened when it was summer and so that I was able to have as much time off as I have.  The timing really couldn't be better.
     -Tootsie Pops.  This is my new addiction.  It all started because I would have one when I started getting tired while I was driving, now I just have them all of the time.  And it really is like an addiction.  I was so ticked when I bought a box of 100 at Costco and every time I went to grab one, it was cherry flavored ( I don't like the cherry one's), so I dumped the box out and counted.  55 out of the 100 were cherry!!!!!  55........why would that be???  It just doesn't seem right.  I almost wrote a letter to the Tootsie Pop Company, but decided that might be a little weird.  I just bought lots of boxes and will give all of the cherry Tootsie Pops out for Halloween and save the rest of the good flavors for me.
     -Britt's doggie-heimlich-manuever skills.  That's right, Britt saved our little shih-tzu Gus's life a few days ago.  He was choking on a rawhide bone we gave him and we could not get it out of his throat.  So, as I was rushing to the vet, and Abby was sobbing in the backseat, and Gus completely stopped being able to get air and was dying in Britt's arms, Britt had the smarts and the guts to try to give him the heimlich........and it worked.  The bone dislodged just enough for Britt to grab it out of his throat.  She was truly a hero.  Although we've joked about it a lot now, it would have been extremely traumatic if he wouldn't have made it.....and we've had enough trauma around here lately.  Way to go Britt, you're a hero!
     -That going through the past 5 months made my testimony strong enough to share it in sacrament meeting.  I've always been too nervous and not had the guts to get up there and do it.  Even though I've been through most of my weakest moments since May 18th, this is one area that's gotten stronger.  I've had to learn to have incredible faith and to completely put my trust in the Lord's hands and His plan for Abby.  By doing this we've experienced numerous miracles and been blessed with many tender mercies.  How could my testimony not be strengthened??  I'm grateful that I finally, after 41 years, had the strength to share my testimony in church. 
     -The new carpet in my house.  I had forgotten that  a couple of weeks before we were life flighted up to PCMC we got new carpet, it was a sweet surprise when we got home!!
     -Other heart kids and their blogs and their moms.  What a great support system we, as heart moms, have.  When I started feeling the blues today, I went and read some of the other blogs about kids with heart problems.  It just makes me feel more inspired and less on my own in all of this.  It's so good to have other people that can understand what I'm going through and that can help me feel like I'm"kind of normal" anyway.  It reminds me that we're not the only ones that have had to go through something that's been hard.  I also get strength from seeing their strength and how they handled things.  I love being able to follow their blogs and see their successes as well as the bumps in the road, along the way. 
     -Once again, the simple things.  Dinners together in our house, listening to the kids argue ( I know, most of you probably don't understand this one), working out in the mornings and not needing to keep my eye on the time when we're all in the hot tub after we swim (this all ends next week, back to work-just the hot tub ends, not the workouts), watching Abby practice soccer with her team again, enjoying the firepit in our backyard, friends stopping by just to check on us, seeing Britt and Brock off to school in the mornings, listening to Abby play the piano, my bed, knowing that I finally have all of Abby's meds for the next couple of months, going to church as a family, Lysol wipes, and good friends.
     - All of you, our followers.  I went back and was reading through all of the comments that people have left on our blog, WOW, we are lucky to have so many amazing people in our lives, even if we've never met some of you physically, it still feels like we are friends. Hopefully, someday Abby and I will be able to meet all of you. I loved it as the football game the other night when a sweet lady came up to me and told me that even though we don't know her, she knows us and has been following the blog from the beginning.  Thank you for telling me that my words have made a difference to you.  I wish I would have gotten your name, hopefully I'll see you again sometime.  We have had so much support from the very beginning and we still continue to have it now.......thank you, it's been needed.
When I think about how far we've come, I realize that I have a lot to be grateful for and that I shouldn't ever feel sorry for myself.  I think I've just had a nervous feeling about next Monday's biopsy all week, something just doesn't feel right.  I'm hoping this feeling is just part of being nervous to have to go back to work next week (sometimes it's still a little hard to even be in the school where this all started-and btw, I'm not going back in the gym for a while ), plus I won't be with Abby 100% of the time like I have been since May 18th.  I think I just need to look at this as the next phase in our adventure and I need to remember that even though this has been hard, we've blessed every step along the way so far, why would things change now??

Monday, October 24, 2011

Leave at 4:50 AM-drive to SLC, go to clinic, drive back to St. George-Arrive 4:50 PM

 4:50 AM-Hop in the car and pull out of the driveway...........

I love driving in the morning, I would do it this way every time if I could!  There's hardly any traffic, and it's actually pretty relaxing.  Abby slept almost the whole way up, and I just listened to my ipod and cleared out my head a little bit!  Even after stopping to get Abby hot chocolate, her favorite, we stilled pulled into the parking lot at Primary Children's at exactly 9:15, right on time.  Abby had her labs drawn-only one poke today, and then went in for her echo.  I was stressed, I'll admit it, I was just worried about what they would find today; But, everything looked great!!  After I heard the results, I was able to relax a little bit.  Then we spent some time with the transplant team and Dr. E. 

I decided it was time for me to ask some questions about rejection, because last week I felt like I didn't know anything and I didn't feel good about that.  I'm grateful that they were willing to spend the time with me to answer my questions.  One good thing that I did learn is that having a few episodes of mild rejection is actually good....if there was never any rejection, that would mean that the immuno-suppresant drug level was too high, and that's not what we want.  So, as long as it's minor, and it doesn't happen too many more times, everything is still looking good.  I also learned the difference between vascular and cellular rejection and what the treatment is for both.  I'm not going to go into it, but I actually understood what they were telling me.  If Abby ever has a higher level of rejection, they will probably admit her, and give her IV steroids for a few days and hope that will clear it up.  Her cellular level was 2.5 last week, which is minor, 3 or above is more serious.  The not so good news is that we have to go back up again next Monday for another cath/biopsy to make sure there is no rejection.  An echo doesn't always show everything.  So, we will probably head up to Salt Lake on Sunday night for an early morning visit to the cath lab and another clinic visit.  I don't think the cardiology clinic would know what to do on a Monday without seeing Abby and I there!  It seems like even though they told us we'd only be going every other week, we've pretty much been up there every week anyway....but, I can't complain, we really shouldn't even be home yet.  If Abby's Prograf level is where it should (we are still waiting for the phone call), Abby will get to go off of 3 of her meds!!  No more Valcyte, Zantac, and Nystatin....woohoo!!! She will also be able to come down even more on her steroids, that means we are one step away from being all the way off of them!  Goodbye puffy cheeks :)  But, I'm not counting on it, with some other weird things that happened with Abby this week, I'll be surprised if it comes back where it should be.  Going off her meds scares me anyway because it seems to mess up all of her levels and make other things happen too!  It just makes me nervous.

I felt good about clinic today, I didn't feel rushed and I left much smarter than when I got there....and that's good!  It was kind of strange because Abby's heart rate was really low, and her blood pressure was really high, but they couldn't figure out why.  It just seems like there are lots of little things going on right now....let's just hope they stay little!  Then we got back in the car, grabbed some lunch and were on our way back to St. George. 

4:50 PM-Pull in the driveway at home!

Exactly 12 hours, and you know what?  I'm tired.  That was a long day.  I think I hold my breath the entire time we are in the clinic, I just feel tense, so when we leave I'm always tired; then, to have to drive back was hard.  What am I going to do next week when I'll have to teach school the next day?  I won't get any recovery time!  But, I'm just going to have to suck it up and do it, I have no choice.  I go back to work November 1st whether I'm mentally ready or not, I'm just going to have to make myself be ready.

By the time we got home, I was tired and ready to do nothing for a while....Abby on the other hand, wasn't tired.  So what did she say as we were pulling into the driveway?  "Mom, can I please go to soccer practice, we are only 1/2 hour late and it will be the first time since May that I can play! Please!!!"  How do you say "NO" to that?  So, we got right back in the car and I took Abby to practice.  Abby got to play soccer today and she did great, she is so tough, and I love it.  I didn't dare leave her alone at practice, I'm way to scared to leave her anywhere where she's going to be running, so I stayed and watched her play......and it was perfect  .It was so good to see her doing her normal things, and being the Abby she used to be!!

Tuesday, October 18, 2011 Monday??? Blah!

What I thought would be one of our easy in-and-out of clinic in 2 hours, turned into being much, much more; In fact, I can't remember very many crazier clinic days!  We got there at 7:30, had labs drawn and had Abby's echo with no problems, I think there was only 1 other patient there at the time.  Then we were just chilling, waiting for the transplant team, talking to our "heart buddies," actually kind of enjoying ourselves for a few minutes.  When the transplant team and Dr. E came in, we still thought that everything was good, then they left for a few minutes.  While they were gone, I had the genetic counselor come in to talk to me.  While she was trying to explain to me what was going on (more on this later), Dr. E. came back in and said that they decided Abby's echo showed some decreased heart function so they were in the process of trying to fit us in the cath lab schedule!  Then I started getting a little nervous.  They were coming in and out checking on Abby and rescheduling everything, at the same time the genetic counselor was trying to talk to me, at the same time Medco, the pharmacy company that our insurance company uses,the company that I've been haggling with for the past 5 weeks trying to get Abby's meds from, kept calling me to tell me more problems they had run into.   You know when you're brain goes on overload and it just kind of freezes, I've been there many times the past 5 months, and I almost went there again.  I almost had a breakdown right there in clinic.......but I didn't, I held it in :)   Anyway,  they got her all prepped and we walked into the cath lab before I had even really had a chance to think about what was going on.  They were happy to see Abby in the cath lab, not because she was there 2 weeks early, just because they love her, she's the perfect patient.  While she was having her surgery, I went and had my blood drawn (back to the genetic counseling part) grabbed some lunch and then they paged me, she was already done.  The good news was that her cath looked great, no problems.  The bad news was that when I walked into the recovery room, Abby was sitting up and she was mad, really mad.  I had never seen her so mad in the past 5 months (well, maybe when they wanted her to talk to the psychiatric team!).  She had only been done about 10 minutes and she was saying,  "I'm ready, let's go.  Let me get dressed now, I'm ready to go. Just let me"  I found out later, after they made her actually recover that she was so mad because the anasthesiologist made her go all the way to sleep, she just wanted use propofol, but he didn't want to do it that way, and it ticked her off!  She was not happy, but she got over it pretty quick-thank goodness!   Dr. E then wanted us to go back downstairs and have another echo before we left.  So, finally, at 3:00,  7 1/2 hours after arriving at clinic, we were on our way home.  The results of Abby's biopsy came back this morning and showed that she is in mild rejection.  Nothing to freak out about.  We just have to make some adjustments in Abby's meds and then go back up for another echo and clinic next Monday and hope that things look better.  I just keep reminding myself that I can't complain about all of the trips to Salt Lake, because we really aren't even supposed to be  home yet.  I think that this was just a reminder for us that we shouldn't ever become too complacent or comfortable, things are always going to come up, we just need to expect it and go with the flow when it does.  It was a good reminder.  It was so good to see some of my "heart mom" friends there yesterday, it's always is a good reminder that we're not the only ones that are going through these things right now, and they can understand some of the emotions I go through daily.

Now to the part that's a little more stressful.  It turns out that Abby's cardiomyopathy is genetically linked.  They found a mutation on one of her genes, the TNNI3 gene to be exact.  This is the information that I learned from our genetic counselor-I might not be completely correct on some parts, but If I'm wrong, I'll repost later: 

-Abby has had this gene since birth, it just didn't manifest itself as cardiomyopathy until May 18th.  It can be hidden for many years, sometimes people never even know they carry the gene.
-People that carry the gene often die from sudden death.
-It's possible that Abby received this gene from either me or her dad.  But it didn't have to happen that way, she could be the first one that carries the mutation.  We both need to be tested for the gene to see if we passed it on to her. I had my blood test yesterday, her dad hopefully will very soon.  It will then take about 3-4 weeks to get the results.
-If either of us carry the gene, there's a 50% chance that Britt and Brock do too.  So, if we carry it, they will also need to have the testing done.  We have all had echo's done, so if we carry the gene, we're okay for now.  If either of them carry the gene, there's a 50% chance they will pass it along to their kids too.
- There is a 50% chance that Abby will pass it on to her kids.  But, with the rejection meds she's on now, she knows she probably won't be able to have kids of her own anyway.  We were reminded of that sad fact yesterday too.  My response to that is.....don't worry about it now, because who knows where will be in 10-15 years when Abby wants to have kids, everything could change by then.  10 years ago, Abby wouldn't have even been able to have a transplant and look where she is today. 
-If I carry the gene, my mom and dad should be probably be tested so we know if I got it from them.  If they carry it, then my brothers and sister should probably be tested too. Then we'll have to see if it's passed to their kids.

It's a huge thing to think about.  For now, I'm just hoping and praying that neither Abby's dad or I carry the gene.  If neither of us do, then Britt and Brock are all clear and won't have to worry about it at all; But, if we do, I guess we'll just go from there.

Yes, yesterday's clinic was pretty stressful.  We didn't get home last night until about 8:00, and I still feel wiped out today.    I have lots of questions for the genetic counselor, so I'm glad I have her number.  One question I have is if Abby carries the gene, can it affect her new heart?  I just don't know, but I hope not.  I'm definitely not a gene specialist, or even a scientist (I only teach 6th grade math!) but right now, I wish I was.

My favorite comment I got yesterday was from a good friend and fellow heart mom.  She said that she was amazed that she was picked to be a mom to such a special little girl.  I feel exactly the same way.  I am amazed I was chosen for this and I wouldn't change it for anything!  Just spend a little bit of time with Abby and you'll know exactly what I'm talking about.  Heart kids are special, and even with everything we go through daily,  I'm proud to now be considered a "heart mom!"

Saturday, October 15, 2011

Clinic Monday, but for now.....just a mellow week!

Things have been pretty mellow around, and I'm not complaining about that at all!!  I think that "mellow" is just what we need for a while.  Abby and I are going back to Salt Lake on Sunday night for clinic on Monday.  One interesting thing is that they got back the results back from the the genetic testing they had done on Abby's heart, they are meeting with us on Monday. I'm not quite sure what to think or feel about this, I can't even begin to think what they are going to tell us.  Maybe they'll be able to answer some of the "why" questions we have, but.....maybe I don't want to know either.  I guess we'll just have to wait to hear what they say and deal with it from there.

I think I forgot to mention that Abby made her final decision for her "Make-a-Wish" wish.  After lots of thought, and timing issues, and taking into consideration that she's not supposed to be in the sun too much and can't swim for about 1 year, she's decided on an Alaskan cruise.  We've heard from our good friend Mama Cozz and her family how incredible it is!  So, the day after Abby's 13th birthday, May 25, we're headed to Seattle to board the ship!  We have a long time to have to wait, we'll have to be patient, but that is one thing that we've learned through all of this!!  There are some amazing excursions that go along with the cruise, it's going to be hard to choose which one's we'll be going on, but I think the zip line adventure through the rain forest is a sure thing-I'll just have to convince Abby :)

I've had a lot of questions about the donor family, everyone is curious if I know who gave Abby the gift of life.  I wrote my letter to the family a couple of months ago, but I haven't heard anything back.  My letter was given to our transplant team, then passed on to Intermountain Donor Services, and then given to the family. The family of the donor then chooses whether or not they want to contact me.  I am curious, but I also know that if it's meant to be, I will be contacted.  There might be a reason that we haven't heard anything, and I'm okay with that.  Maybe the family just needs more time, or maybe it's a situation that I just wouldn't want to know.  It's okay, I'm okay with this.  I will forever be grateful to them and think about them daily-whether I know who they are not, they are the reason Abby is alive today.

One thing that I've learned this week, is that there is nothing more frustrating then dealing with insurance companies and pharmacies.  I've spent more time on the phone this past week then ever before and it's making me crazy.  It seems like no one does their job or know what's going on.  I completely lost my cool, and I rarely I do that!  I finally even said to one poor lady that their company was completey incompetent and horrible at communication and then I asked if I could please talk to someone, anyone, that actually knew anything about insurance.   I wish I could hire someone to make all the phone calls, pay and figure out all my bills, and make sure Abby has all of her meds when she needs them, so I can just take care of my family.  Between Britt's 3 surgeries and all of her physical therapy, Mine, Brock's and Britt's echos, and everything that's happened with Abby this past 5 months, it's just a big mess.  It almost makes you just feel like just giving up and saying, "go ahead, take everything I have and just leave us alone!!!"  Frustrating.......just frustrating.

We've been home for almost 2 weeks now, and being here is helping me remember some of the great things that were done for us when we were in Salt Lake.  I'm starting to be able to sort some of those things out in my mind and I know that I didn't thank many of you for your support and prayers, especially things that were done right in the beginning.  Please know that we are grateful, it made things easier for us, we do appreciate you.  I feel bad that I didn't keep up with things better, so if I haven't thanked you personally, I'm sorry, please accept this thank you.

One of the greatest moments of this week was last night, as we were driving to Vegas to see Phantom for Britt's belated birthday present.  I was sitting in the front driving, and just listening to my three kids in the back-laughing together, singing together, just talking and enjoying each other.  It was a complete feeling of contentment.  It made me stop for a minute and remember how lucky we were to even have that time, things so easily could have gone the other way.....really should have gone the other way.  I will always be grateful for times like those. We are one lucky family. 

Monday, October 10, 2011

It's Monday and we're not at PCMC???

Today is the first Monday in almost 5 months that we haven't spent at Primary Children's!!  Wow, it actually kind of felt weird.  We did, however, have to go to Dixie Regional for some labs.  We're hoping that Abby's white blood count is finally up....this house arrest is really getting to us!  Plus, her Celcept and Prograf levels were a little off last week too, so after some medication adjustments, we'll hope they're back in the perfect range!!  The amazing thing that happened today was that it only took one poke!  Abby is almost always a 2-poke blood draw kid, but not today.  It was a little funny, after we had been sitting in with the lab technician for about 10 minutes, just chatting, she stopped and said, "'re the girl that collapsed in PE last May aren't you???"  Then she just stared at us with her mouth hanging open and kept repeating, "Dang!!" over and over again.  Abby and I got a good laugh out of that!  It was so nice not to have to drive up to Salt Lake this week, I actually feel like I've had time to finally start recovering!  We will have to go back for Monday morning clinic, but we won't leave until Sunday afternoon and we'll come back right after her appointment on Monday.  I can handle every other week, that works for all of the Doman crew!

So, what have we been doing this past week, since we've been back home?

-Unpacking and moving in.  This took a lot of time, because I felt like I had to clean everything before I put it away (remember my germ obsession?)  I really just wanted to throw everything we had away and start over, but financially, this wasn't a smart idea, so I cleaned everything.  I did throw lots of stuff away and sent it to the DI.  I realized we had a lot of stuff that we didn't need, so I just tossed it.  It felt good.  I'm still not done with every closet and cupboard....but we're getting close!
-Visiting with friends.  Thank you to everyone that has stopped by to see us!  It's been fun to catch up with you and find out what you've been up to the past 5 months.  Everyone knows what we've been doing, but we don't know what's been happening with anyone else.  Thanks for bringing us goodies and notes too!  To those of you that have been sick or around sick people, thank you for not stopping by....we really appreciate that.  Thanks to everyone for making us feel so welcome and loved.  It is good to be home!
-Keeping Abby caught up in school.  She's getting bored, I think she's realized that school really isn't fun without friends.  She's counting down the days when she can be back in school, November 7th can't come soon enough. 
-We did break the house arrest rules and we went to church yesterday.  We had to because the bishop called Abby up to the pulpit in sacrament meeting to announce that she's moved in to young women's.  She turned 12 last May, but since we haven't been around, she hadn't officially moved up.  It was pretty amazing to see her up there, I saw quite a few teary eyes in the congregation.  Considering everything that we've been through, this was a big deal!
-Watching Brock play football.  Desert Hills is tied for 1st in the region, and with Brock playing both JV and Varsity we're spending lots of time watching games....and I love it!  This has always been one of my favorite things to do, I have always loved watching my kids play sports, but with Britt out with her knee problems and Abby out with her heart problems, I've really been missing it!  I can't wait until I can go watch them all play again!
-Enjoying the simple things.   Sitting down for dinner together, watching tv, helping each other with homework, having the kids' friends over for lunch during school,  roast marshmallows and make smores, going out for icecream, Sunday dinner at grandma's house, my  morning workouts, being home when Britt and Brock go to school, shopping at Costco, working in the yard (I haven't gotten to this yet, but I will soon!), playing or snuggling with the dogs, etc.

Things are good.  Life is beginning to feel more and more normal.  I have 3 weeks to get myself ready to go back to school, and 4 weeks to get Abby ready.  One thing that I've realized this past week is that I wish I hadn't taken my life before the heart transplant for granted.  Things that didn't really matter, used to seem I know better.  I look at how easy things used to be, and I wish I would have realized this at the time.  I guess it's just a matter of stepping back and putting things in perspective.  Although we will never have that "easy" back, things can still be good now.....and they are.

Tuesday, October 4, 2011 last, and it feels good :)

I am typing this from my own couch, in my own living room, in my own house, and it feels good.  We are finally home.  I know I went a whole week without a post, last week just wasn't a good week.  Have you ever had those weeks when you just don't feel like anything is going right?  I had one of those and I couldn't think of anything positive to say on the blog, so I just didn't say anything at all.  I think with Abby being on house arrest, plus the anxiety I was having about her cath/biopsy yesterday, plus she was feeling sick all week, plus the stress of trying to get moved back in our house and out of our Sugarhouse house, it was just a little too much and it threw me into a funk; but I feel so much better now!!

Yesterday was a good day.  The docs told us that Abby's cath looked amazing, her pulmonary hypertension is much improved.  She also had a clean biopsy!  They decided that last week she probably just had a little stomach virus, but she's feeling better now.  Her whilte blood count is still low, that was the only bad news, so we're back to house arrest.  We just can't have a lot of visitors until it gets back to the normal range! This is hard for Abby, she just wants to be with her friends!  We get to be in St. George all the way until her clinic visit on October 17th....almost 2 full weeks!!!  Abby loved pulling into our driveway today and seeing the balloons and banners on the garage and the front door!  Big thanks to grandma and Meri and Rich and the kids for that!  I was lucky enough to come home, drop the kids off, and go to a party with my friends!  I needed some time to do something for myself and it was so good to see friends and just to have fun and some adult conversation for a while.  It was the perfect welcome home!  I have to say that we experienced another miracle this morning when I was packing the car.  There was no way that the stuff we had left to pack was going to fit in my car, there was just too much....but somehow, it fit.  There wasn't any extra room at all, it just fit perfectly!  Thank goodness because I don't know what we would have done if it hadn't.

I'm so excited to be home, but there are many things I will miss about Salt Lake.  I will miss the security of having PCMC so close, I trust them there now, they know Abby and what she's gone through.  I will miss seeing all of our "heart friends."  You all better stay in touch, we will miss you.  I will also miss seeing my friends and family there.  I've gone to lunch many times and had the opportunity to visit with many of my old friends, aunts and uncles and cousins. Lots of people I haven't seen in a while.  I will really miss you, please call whenever you're driving through St. George....and it's not like we will never be back to Salt Lake, we'll still be there every two weeks!  I'm just glad we missed the snow and cold, I hate that!! 

I feel like we are now beginning the next step in our journey.  Yesterday, all day long, I couldn't help feeling anything but gratitude.  I'm so grateful for the doctors and the transplant team for understanding my need to get home as soon as possible.  We were told that we wouldn't be able to go home for 4-6 months after the's only been 2 1/2 and we are home.  I was also feeling so grateful for Abby's donor family.  I think about them every day, and even if they haven't chosen to contact us yet, I know that if it's meant to happen, it will.  I'm still so grateful for the timing with all of this.  I am home and still have about 3 weeks to heal and get settled before I need to return to work.  I need this time, I'm not emotionally ready to teach school yet, but I can be by November 1st.  I'm so grateful for Abby and Brittany and Brock-they are amazing kids and have been so strong through all of this, I can't help feeling like just sighing and saying, "we made it!"  I'm grateful that I no longer ask why this had to happen.  I've realized that it is probably something that I won't understand in this life, but someday I will know.  I also know that the growth my kids and I have experienced the past 4 1/2 months is necessary, it has a purpose....this too will be revealed in the future.  I'm grateful that every time I've felt like I've been pushed to my breaking point, that even just one more thing will be too much,  I've been reminded that I'm not in this alone, He has been there every step of the way and knows how much I can handle.  I have a lot to be grateful for.  Every day we have with Abby is a gift, in fact, every day we have at all is a gift.  I hope I can always live my life remembering to be grateful for that gift!  It's good to be home, it just feels good.

Monday, September 26, 2011

Awesome music festival, not-so-awesome clinic appointment today

First, the good....then the not so good, then the bad. 

The Good-The music festival at Daybreak on Saturday was awesome.  My kids and I were lucky enough to spend the whole day there together, and we had a blast.  The stuff that was donated for the silent auction and the raffle was so nice, at one point Abby even asked if she could enter the raffle for one of the prizes.  Those of you that won were pretty lucky, I hope you think it was well worth it.  The music was incredible!!  Every band that played was good, I only got a little nervous when I thought my dad was going to go up on stage and take over the mic, he just wanted to be a part of it, he was loving the song selection too much.  For more info on some of the music that was there visit  The games for the kids were great too!!  Nothing better than watching Brock, Britt, and Abby doing the "cookie walk" and the fish pond.  But my favorite part of the day was just being there with my friends and family.  At one point, my cousin's wife said it best when she said that she isn't glad that this had to happen to us, but so much good has come out of it, there have been so many benefits; and I have to agree.  I have loved reconnecting with my cousins and their families and my aunts and uncles, and I don't know if we would have done this without going through the past 4 months.  Thank you Robb and Melissa, you spent so much time on this day, I hope it was just how you wanted it to be.  Thanks to the rest of you that helped as well, there were so many of you helping, I don't dare list names or I know I'll forget someone.  Thanks to the bands that played and to all of you that showed up to support us.  It was an all-around great day!!

The Not-So-Good- Abby had clinic this morning, and it wasn't our perfect clinic that we're used to.  First, her blood pressure was high, it hasn't been high since the transplant. Then her white blood count was only 1200, it's supposed to be 1,500, so she's at a higher risk of becoming sick.  Therefore, back to being extremely careful around people-we're keeping her isolated this week.  I guess I'll be even more germ-concious this week!!  Probably seeing the movie Contagion wasn't the best thing we did last week, I was already a germ freak, now I'm even more paranoid.  Abby's renal level was also high-probably due to the steroid decrease last week.  And last, her Prograf level was a 17.5 which is way high.  I haven't ever mentioned this number before because Abby's has always been right on, until today.  Prograf helps to prevent rejection in her heart.  Each time we go to clinic they test her level, today it was high, so....we are supposed to be watching for Abby to get the shakes, a headache, an upset stomach, a fever, the chills, etc.  If any of these come up, we have to call the transplant team and decide what to do from there.  None of these things are too major, just little things that we didn't really want to come up the week before we hopefully get to move home.  We just need to be very watchful this week and hope for the best.  I was told that when you have something big planned is just when something always happens, and sure enough it did.  Monday is the big cath/biopsy day.  I'm a little nervous after everything that happened today, but were thinking all will be perfect again.  I guess we need to expect some bumps along the way.

The Bad-One of our best little heart friends, Kaidence and her mom, got some bad news after her cath today and really need some prayers sent their way.  We've personally seen the power of prayer this past 4 months.  Her blog is if you want to read her story.  Incredible story, incredible mom, incredible little girl.  We've become really close with this family and they've helped us so much this past 4 months, Shauntelle has always been there for me, and now it's our turn to help them.  Try to include little Kaidence and her family in your prayers if you can.  We love you Shauntelle and Kaidence...hang in there.

Sunday, September 25, 2011

Mustangs, Music Festival, Football Game, and Zumba pictures

Photo shoot for abby to advertise for the Tuacahn Mustang Car Show in April

Abby's favorite! It changes colors while you walk around it

 Desert Hills football dedicated game to to Abby
 Abby's in the middle of the 7th grade football players!
 Spray painted an A and a D on their arms

Music Festival at Daybreak... good music, good raffle, good people, good fun.. thanks everyone involved

Zumba Fundraiser at the Warehouse! thanks everyone it was a blast.

Friday, September 23, 2011

Fears and Happiness

I had an interesting conversation with a good friend yesterday.  She asked me how I was doing, and of course I gave my favorite standard response again, "I'm good,"  then I tried to change the subject...."How about you?"  But she didn't let me off the hook that easily, she was just curious about what it was like to instantly have a child with a serious medical condition, when everything used to be perfectly normal.  I think she was just curious about my overall state of mind.  It took some serious thought on my part.  Honestly, It had been a long time since I had thought about how I was doing emotionally, we have just been going through the motions, just living the day-to-day.  After thinking about it, I decided that I  really am fairly okay right now.  It's just a complete shift of thinking.  There are some things I'm still pretty hung up on......I don't ever leave Abby alone, that scares me too much, I'm obsessed with making sure she gets her meds and that she gets them exactly on time, I'm also a little OCD about her vitals-we're supposed to check them twice a day, and we do, not matter what, and if they're off at all, we check them again a little later just to make sure they are okay.  I am also constantly checking on Brittany and Brock, I like to make sure they're alright.  This is probably driving them both crazy since they are teenagers, but I'm still just a little paranoid right now.  I'm now a major germ freak.  I'm constantly using hand sanitizer and making the people around me use it too.  I think in church last Sunday, we sanitized at least 4 times during sacrament meeting.  Every week when I go to PCMC I stop by the pharmacy and buy some Avagard, I can't help it, it's a habit now.  I'm also going through tons of Lysol wipes every day.....thank goodness for Costco, I just have to have things be clean.  We can't get sick!!!

But to me, these are all just little things.  For the most part, I think we are recovering.  Every once in a while I even get a glimpse of the old, carefree, fun Michelle.  Maybe..... hopefully, I'll get back to that someday.  I do have 2 major fears that are constantly in the back of my mind.  The first one is that we are going to get all moved back into our house, back to work and back to school and feeling like normal people again, and then something is going to happen and we are going to end up back at PCMC.  I don't know if I feel this way because it's hard to believe we will ever really be "normal" again, or if I'm scared to take Abby's ease with all of this for granted, or maybe I've heard too many stories about kids with heart issues that are always ending up back in the hospital-I know there are so many things that can still go wrong, or because it just seems to soon to be back home.....only 4 1/2 months after this all started....not even 3 months since the transplant.  Whatever the reason, it's a constant source of worry for me.  I tell myself to just let things happen, I have so much faith that things will happen how they should happen for us, but it's still back there in my mind.

My other my other fear is going back to school and teaching again.  This is a strange fear for me because I've been teaching for 12 years, but I'm more nervous to go back then any year....ever.  I haven't been able to think about teaching, at all, since May 18th, and I feel so out of it.  I've been so focused on Abby and my other kids and making sure they're okay, that I haven't allowed my mind to go anywhere else and I'm not sure how to find room in there to think about being a good teacher again too.  Teaching isn't a job that you show up for work and then go home and don't think about it anymore.  I'm always thinking about what can I do better, how can I help them understand this concept, what am I going to do tomorrow so they "get it," how can I be a better teacher for a certain student, etc.  I used to be able to really focus on being a good teacher, and I'm scared that I won't be able to anymore, I'm scared I've lost that focus and I won't be able to be a good teacher again.  What if I get in the classroom and I'm just a stress case and can't keep track of things?  what if I can't deal with the new math curriculum I'm supposed to be teaching this year? What if I can't even focus enough to learn all of my students' names and their needs?  What if I have to go back up to Salt Lake because something happens?  What if something happens to Abby again and I'm at the school with her this time?   What if I get sick and can't miss because I don't have any sick days left?  What if I can't remember how to be organized and I'm just a mess now?  what if my end-of-level test scores go way down this year?  I know it's not good to play the "what if" game, and it drives a couple of my close friends crazy when I do it, but I like to think ahead and try to be prepared for any situation.   I have about 1 1/2 months to get prepared to go back, and I think I really need this time.  I'm really hoping that I'll get back in the classroom and it will just feel natural again, that it will just feel right, but who knows?  I guess only time will tell.

Overall, we are doing okay.  We find joy in a lot of the little things now, we didn't use to do this.  We are happy to just be together as a family whenever we can, we are happy to have 5 whole days in St. George, we are happy to go out to lunch or get ice cream with friends, we are happy to go running-even if it's only a little bit.   It makes us happy to see people wearing Team Doman shirts, or to sit outside in the sun and read a book, or to have people that I never really knew come up and tell us how the blog has helped to change their life in so many ways.  It makes us happy to hear when our "heart friends" are having successes, or when we hear of another child receiving a heart.    It makes us happy to look back on so many sweet memories we have of the past 4 months, and to look at all of the relationships that have been formed or renewed or enriched because of what we've been going through.  We are just happy that Abby is alive and improving every day, her life is a miracle.