Make A Wish...

Heath with EB, Marcia and Alegra

 Years ago someone from our Duke cardiology team said, "well, soon you can start to think about Make A Wish if you would like.  you let us know when you are ready and we'll get the ball rolling..."  We blew that idea off for a long time--feeling like we would be taking something from someone who "needed it more than us."  Finally this summer at Heath's heart cath, we talked with the Duke staff a bit more about Make A Wish.  We decided to look into it.  Because Heath is a heart transplant patient, he was accepted very quickly.  I had always thought that Make A Wish was for cancer patients because those were the only stories I had seen on the news, but I have since learned more about the organization. Here is Make A Wish of Eastern NC's mission statement:
Our mission is to grant the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength, and joy.
http://eastnc.wish.org/wishes

2 other reasons that we had waited to explore the possibility--to make sure Heath's health was in a decent place (see previous blog post) and for Heath to be able to make his wish on his own.
And he did just that.
We helped him go through the brainstorming process--where we were challenged as parents to encourage him to "dream big."
When the wonderful volunteers--Marcia and Alegra--came to figure out his wish, he had drawn them a picture and written his wish:  I would like to go on an airplane to Legoland California to meet EvanTubeHD and make a video to put on YouTube.
They made sure he understood that it was a few wishes in one and that he might not be able to get all of those things together, but they also said that they were soooo impressed at the amount of thought he had given that they would present the wish as one.
And with much work from several teams of Make A Wish staff (eastern NC, san diego and national office), they made the WHOLE WISH happen!!!
Marcia and Alegra came yesterday for our official wish party where we were given the final details.   Heath, Ella Brooks, Chris and I will leave on Friday, Jan. 16 for San Diego (Wilson is staying here with Chris' parents and Mom and Strow--he'll have LOTS of care! and our dear friend, Shelley, will be joining us for part of the trip in San Diego as well). We will meet Evan, his family, and his production company folks at Legoland on the morning of Sunday, January 18.  It is also is HEATH'S 7th BIRTHDAY!  He is so excited.  We all can't believe it is happening.
As I found myself almost apologizing to a friend about our getting this opportunity, she said, through tears, said, "Carrie,  he almost died.  He endures and will endure ups and downs and tests and procedures and blood draws and meds for his whole life.  There are plenty of wishes for everyone.  Don't you dare apologize.  Just go..."
And we will go.  Many of you may be asking about Evan--please take a look at the sites below.  Evan is a 9-year-old boy who started making Lego reviews about 4-5 years ago with his dad.  His YouTube following has gotten bigger and bigger and they hit 1 million subscribers recently.  Ask most kids who know Legos or Minecraft, and they'll know exactly who you are talking about.  Heath started watching his videos years ago as he spent more time in the clinic and hospital--they seemed like regular people and it was a "safe" thing for us to let him watch.  He started feeling like he knew them.  So, it makes sense that Heath would choose to meet Evan and to learn about what he does with his videos and how he lives his life.
That is ALOT of explanation, but I realized that you would want to know about this exciting time in our journey as a family.  We will update with pictures and details.

An EvanTube video about going to the opening of the Legoland California Resort opening:
https://www.youtube.com/watch?v=fWv4947fjzM

A Newsweek article about Evan from October:
http://www.newsweek.com/2013/11/01/most-popular-kid-youve-never-heard-243854.html

Evan on Good Morning America:
https://www.youtube.com/watch?v=YHTORWJLdQs

Running for fun...

getting ready for the fun run

At Duke's 1000th Heart Transplant Celebration--Heath was #763.  It was a really special day to meet so many other transplant patients.  AND, we broke the Guiness Book WR for most transplant patients in one place!

“Go run down to the top of the trail to warm up,” is what I heard as I walked in a little late to my boot camp class this morning.  I ran down the sidewalk next to the YMCA and then started through the tunnel of pine trees—all the memories came flooding in and I was glad that I had been late and was running completely by myself.  You see, we lived right there for our first 6 months in Durham.  Once Heath was out of the hospital and able to be outside, we walked that pathway every day on our way to the playground at the Y.  Sometimes we walked it late at night with Zeke (our previous dog) when we needed to clear our heads from the stresses of the day.  And today, I was running that same path by myself as my sweet boy was RUNNING in the boosterthon fun run at his school.  What a difference 6 years makes.  6 years ago TODAY, Nov. 6, our lives turned upside down when the pediatrician “heard something a little funny…” at Heath’s 9-month well-check.  I was in Black Mountain with EB meeting our buddy Mason for the first time when Chris called and said, “You need to come home right now.  We need to go to the hospital.  Something is wrong with Heath’s heart…” We learned that life changes in an instant.

halloween 2014

The medicine changes that we made (mentioned in my last blog post from Dec. 2013—wow, I haven’t written in a LONG time) took a few months and many blood draws to iron out.  BUT, it appears that the doctors have found the right combination for Heath—at least for now.  Heath’s levels got to the right spots, and his liver numbers went back down (not perfect, but MUCH better).  Then, in August he had his annual heart catheterization and he had a 0 REJECTION LEVEL.  He hadn’t had that 0 in at least 2 years!    With the medicine changes also came an unbelievable change in energy level —for the better.  We had really worried about Heath being able to stay all day when he entered  first grade in August, but it hasn’t been a problem so far.  He still has some OT issues with his writing, but he has almost completely caught up with his grade level already, and he LOVES school.  He pretty much loves everything about it.  And his enthusiasm is infectious. In fact, we are starting to think that he might make an excellent school mascot in college.  If you have spent any time with him, can’t you see it?? 

Most people look at you like you are a bit crazy when you tell them this part of our family story.  You wouldn’t know what he had been through by looking at him.  Of course, it will always be there—immuno suppression, tests, meds, chances of needing another transplant—but right now we’ll just relish being in a good place.

Quite a few people in our lives have endured some really hard things since this past spring—the sudden death of my childhood friend/framily (who has 2 beautiful young children) is still unfathomable, our sweet Olivia (Heath’s PICU roommate in 2008) going back on the transplant list, our new friends’ loss of their 6-month-old baby at Duke a few weeks ago, others' family crises.  Each time I find myself racked with tears and feeling the weight of the loss and worry.  But then I try to remind myself that we’ve also seen some good things—birth of my niece, celebrations of life work and retirement, laughs at our crazy toddler (who is really going to give us a run for our money, in case you were wondering), family fun, hearing tales of friends bringing their newest child home from China today.   We have the great privilege to sit with people in their worst moments in life but also in some of their best.  In ministry we perhaps get to do that even more than most, but I believe that all of us get to do that at points in our lives.  we just have to be present—and to figure out how to try find a light of hope in the darkest moments.

UNC hospital right after diagnosis on Nov. 7, 2008

As we hit this month or so of “anniversaries” every year, I have many different feelings.  I often feel tears welling up as I am reminded of the more vivid parts of the wild journey we’ve been on so far.  Today, however, I breathed in the autumn air in the pine tree tunnel and found myself smiling.  I somehow felt a little free. And then I went and watched a bunch of really excited children run around in circles to raise money for their school.   Just another day in "paradise," I suppose, and I’ll take it.

first day of 1st grade and 3rd grade!

Waiting...

 Those of you who know me well know that I am not a particularly patient person.

. 

In regular life I tend to be a tad impatient with my sweet children.  I have a “bit” of a lead foot when it comes to driving my smoking hot minivan.  I have a hard time letting bread rise for as long as it really needs to…This impatience has been an issue for me at times in this wild medical journey with our boy.  Waiting for answers, waiting for a heart, waiting for him to rally from illnesses, waiting for appointments, waiting for meds to be filled, waiting to discharged from the hospital (why does it always take hours??) and even waiting for cars to figure out how to move through the Duke parking garage.  Yes, there is A LOT of waiting.  Sometimes we handle it well.  Sometimes not so much.

MR. GOLD.  a really special person at Lego found Heath this treasure, which made our whole hospital experience so much better.  we will be forever grateful.

This fall has not been any different.  In late June, Heath had a really bad episode with his gastroparesis while we were at the beach.  We came home and saw our GI specialist at Duke.  After our appointment, she called and said, “as I was looking over Heath’s records again, I noticed that his liver enzymes have been fluctuating for quite some time.  I think I would like to take a closer look at that to make sure we aren’t missing something…”  An ultrasound showed a “slightly enflamed” liver.  Now we had to get to the bottom of it.  So, we moved to multiple rounds of bloodwork (one time he had 14 vials of blood drawn at once!) to rule out any kind of illness or infection that could affect those numbers.  When the last round came back negative, I knew what was coming next.  “We’d like to do a liver biopsy.”  Regardless of why you are doing the tests, no one EVER wants to hear that “b” word.   It breeds anxiety, even in the most calm of people.  Once it was scheduled, it took another month to actually do the biopsy because of some other bloodwork (clotting factors) that came back out of sorts.  Poor guy has had so much bloodwork in the last few months.  Alas, they finally did the biopsy on Nov. 22—which requires an overnight stay (which we hadn’t done in almost 2 years!!).  It has taken 2 more weeks of waiting for results, doctors to confer, and then to talk with the different specialists involved—but we finally have a beginning of an answer.  They believe that one of Heath’s medicines may be causing a “slight injury” to his liver.  Ultimately it is a good answer because it means that there is not something else wrong with his liver.  For those of you who have been very patient in waiting for us to share the results, thanks!  We’re celebrating this small victory.  Now, of course, we get to hurry up and wait to negotiate the delicate balance of medicines.  We’ll take that answer, though.  We’ll be getting to work on this in the next few weeks.

In the meantime, Heath has been doing really well.  You would never have known any of this testing/worry was going on if you had just seen him.  He is loving kindergarten, learning to read, riding his bike, running around with his buddies and creating amazing “custom pieces” with his Legos.  We’ll take that as well.  We’re all doing quite well—EB is getting to be so grown up and loves school and life.  Wilson is growing like a weed and is the happiest baby I have ever known—even when he wakes multiple times during the night (we’re working on this—there is a big of sarcasm coming from this tired mama).  Life is pretty darn good.

And what I have realized is that on this crazy journey, we’re just going to have to figure out how to wait well.  We’re going to figure out how to balance the constant worry about what is happening health-wise with the joy of small stuff and the gratitude that comes with realizing that we even get to enjoy pretty regular days together.  Some days we do this better than others, of course. We’re going to have to figure out how to answer questions about how we’re/Heath is doing (sometimes “fine” is actually fine and sometimes it is not, but we’ll tell you what we can deal with in the moment).

5 years ago in the morning on this day we weren’t feeling very sure that we’d ever get the chance to live day to day with Heath.  It was a very different kind of waiting.  Frankly, I couldn’t have even imagined being able to sit here and write this.  And then in the evening we heard that they might have a heart match.  And then some really amazing parents, in the midst of the worst moments of their lives, gave us a gift for which we can never truly say “thank you.”

Advent is a season of waiting.  Waiting for the One to break into the world and make all things new.  For our family, we always make our way through this season with a whole new understanding of waiting, with both heavy and grateful hearts, and full of anticipation.  

We wish you each blessings, and huge amounts of patience, as you make your own way through this season.

You don't know you're beautiful!

oh, the LEGOS!

EB had her first "hippity hop" dance recital  on Sunday!

 Heath graduated from preschool a couple weeks ago.  It seems unbelievable to me that he could be getting so big--that all my sweet children could grow up so fast (ok, so Wilson is just 2 1/2 months old--we've got a ways to go on that one).  Each child got an "award," and Heath's was, of course, "Most Expressive Singer."  He really likes to sing--and often sings that last word of each line with added emphasis and volume.  It shows his zest for life, and you can't help but smile when you hear him.  On another day, Muffins with Mom, the class had sung a song with a line, "its a great day to be alive and I want to spend it with you!"  The kids pointed to each of us as they sang that YOU.  It was the last word, so Heath sang "you" with particular volume and expression as he smiled at me.   My heart melted and the tears welled up for just a moment.  I AM so grateful that he is alive, and that he continues to teach us so much about what it means to live life with great joy.  Right now much of his joy is geared toward LEGOs.  He is a bit obsessed--and likes to make those crazy videos that you can see on youtube that "review" Lego sets (we do not post them online but they are hilarious!).  Mimi took him to the Lego store in Raleigh last week, and i don't think he has come back down from his excitement.  That trip was supposed to be a treat on the day before his heart cath
(He was supposed to have his annual heart catheterization this past Tuesday morning).  Due to some recurring tummy issues and a little bit of congestion, they decided to postpone it until July 2.  I realize that many people knew this was supposed to happen and I didn't let folks know that it had been put off.  He is doing so well that I almost forget that we have to do these things to make sure that he continues to do well.

EB had her first dance recital last week.  She took hippity hop (early version of hip-hop), and her dance was toward the end of the long recital.  Heath was very proud of his sister, and he was ready for her to come on. He was really tired of the ballet "stuff." He does NOT have a whisper voice as he tells us this.  For one of the other classes, the song "You don't know you're beautiful" came on.   Heath loves that song.  He started singing.  With that continued loud emphasis on the last word.  I kept shushing him, and he would stop singing for a second, and then he couldn't help himself and the words would come out again.  Chris and I were alternating between laughing so hard we were crying and being horrified that he was so loud.  Luckily, we were in the back row.  That seems to be the way Heath Tuttle rolls in this world--loud and with great emphasis and joy.  Would that we all could find the joy in such things--I think our children have so much to teach us about appreciating our days and who we get to spend them with.

Right now my kids can't wait to do some celebrating and dancing at Uncle Jamie's wedding next week...I am sure there will be some pretty spectacular stories to share on that journey.

We will welcome your thoughts and prayers as we try to stay healthy on all our travels and on July 2 as we head into the cath.  It has become so routine that we usually don't give it much thought until the nervous feelings hit the night before.
Wishing you each  a summer full of great, regular days that are full of joy and singing and dancing--and, LEGOS.

carrie

new life in the tuttle house...

 I realized a while back that i had managed to not ever mention on this blog that we were expecting a baby.  That might have made it even more real--and somehow i don't think we fully had allowed ourselves to realize that WE WERE HAVING A BABY until he was almost here...

Wilson Tate Tuttle was born on March 21.  He was pretty big---8.8 lbs-- especially considering that we had had many ultrasounds partially because they thought he was going to be small.   The fella is surprising us from the beginning (also, we didn't know if he was a boy or a girl until he arrived, which was a fun surprise).  He came out hollering, but he hasn't done much of that since.  We're hoping that this very chilled out personality continues.  he just takes the chaos and the noise and craziness of our household in stride.  I guess he heard it all while he was in the womb.

 His big brother and sister are enjoying him. At first we were worried about how Heath would handle having to share his mom (he spends ALOT of time with me). But, other than having a pretty tough time seeing me in the hospital bed (he knows a thing or two about what happens in that place, you know), he has been pretty ok.  He even took the picture of the Wilson basketball you see below.  EB has been fabulous, of course, and she loves sitting Wilson on her lap and playing with him.  Neither is thrilled with poop or spit up, but really, if we're honest, who is?? :)
No doubt there will be some harder moments--we have no illusions of clear skies--but we are thrilled at    the way our family of 4 has become a family of 5.
We didn't get here lightly.  It took us years to make the decision to add to our family.  After all of the struggles we have faced with Heath's health, we sought medical advice, counseling--you name it--before deciding to have another child.

I talk about HOPE often in this blog.  Some might say it is my "preacher trump card."  Somehow, once we knew that it was not much more possible to have another heart issue than you would have with any pregnancy (but once you have been part of that 3-5% it feels much bigger, let me tell you!), we saw it as our own act of hope in the world full of things that don't always make any of us feel very hopeful.  We wanted to be able to say that even in the midst of some pretty hard stuff (that doesn't go away, even though Heath is doing extremely well), we were able to keep on living.  We wanted Heath to know, as he grew up, that what happened to his beautiful little body was only part of our collective family story--not the whole of it.  

So, we'll keep on hoping and dreaming here in the chaos of the Tuttle house. and I hope that you'll do the same.  well, that doesn't mean to go have a baby, but figure out what helps you live out your hopes and dreams...
and I will update more soon.
blessings to all.

lighting a candle

 Advent has always been my favorite time of year.  I love the anticipation, the preparation, the music, the celebration.  4 years ago my feelings about Advent became much more complex.  My favorite time of year became the hardest time of year as well--a best of times, worst of times scenario.

This year at a time of anniversaries in our life with Heath, I am keenly aware of so many in pain, dealing with their own memories of hard things, or going through hard things of which they will now have "anniversaries" throughout their own lives.  Yesterday I was helping to host brunch in the PICU & PCICU (pediatric intensive care units) at Duke for families and staff--it is always hard to be there but it is also great to be able to feel like we're helping others who are where we were not so long ago.  I was thinking about a friend who had traveled to her hometown to be with family & friends to bury her second close friend who had been killed in a tragic accident this year.  I was chatting with staff and swimming in my own memories of our time in the PICU in Dec. 2008, waiting for a heart for my sweet baby.   And then came the message--learning of the tragic death of the 14-year-old son of a friend from seminary.   Making it only more tragic was the fact that that friend had actually died several years ago, leaving his wife and 4 children.  Sitting in that place, I couldn't even allow myself to feel anything.  It was simply too much.

I came home and painted Heath's bed.  That's what I do when I don't know what else to do--house projects.  Chris raked leaves--we couldn't really speak (wonderful in-laws were here doing art projects with our kids, thank goodness).  As he walked around the corner with another bag of leaves, I said, "here's the thing:  I am tired of having reasons to cherish each moment."  That sounds ridiculous because I am often reminding everyone to cherish their "regular" moments and to hug their children a little tighter, but that was all I could feel yesterday.  I just want the awful hurt to go away for all those people I love who are in really unbearable places.  Heck, even for the people I don't know who are in unbearable places...
But alas, I know life doesn't work that way.  And I also know that we don't stay in the darkness.  The light comes--sometimes dimly at first, sometimes bright and shining.

Tomorrow, Dec. 10, is the anniversary of the day that Angelina's family lost their baby girl.  They were about to turn the machines off when someone rushed in, realizing that they had never been given the choice to donate her organs.  They decided in the most awful, darkest, moment of their life to do something that shed light in the lives of others.  And then they had to wait for DAYS for all the meds to be out of her system, in their grief, so that they could give life to someone else.  I will never be able to thank them, really, for those days of agony.  On Dec. 13, her heart was flown from Texas, and she saved my son's life.  Their gift, their act of hope, is what reminds me that there can be light in the darkness.  I know these anniversary times are so hard for them, though.

Tonight my little cow and my dancing angel sang in the the Christmas pageant.   It was one of those good evenings that makes you cherish the moments (see, I do know these exist!).  They sang beautifully--Light one candle for Hope, one bright candle for hope...
And I do.  For all those people who are hurting in this time of the year when we think we're supposed to be cheerful and full of the holiday spirit.  I light my candle, believing that the light will come, that hope will come, even if it takes some time.

Heath's Leg Surgery TOMORROW MORNING!

Shame on me--here it is again about 9 p.m. on the night before Heath has a procedure, and I am just writing about it.  This one came up pretty fast--and we actually didn't know it was going to happen until this past Thursday!  Heath is having a heel cord lengthening surgery tomorrow morning at Duke at 7:30 a.m.!  (whew, you might first need to say a prayer that we get there on time at 6).  The procedure is only supposed to take about an hour, and I suspect that we'll be home by mid-afternoon.  He'll have to wear a cast for 6 weeks and then will have a new boot that he'll have to wear pretty much all the time after that.  But, it should give him better range of motion, which is what we're shooting for.
background:
I have written many times about Heath's "leg issues."  They think that he probably had a small stroke while he was on ECMO (life support) pre-transplant and that it just happened to only affect the way his right leg tightens.  If you have seen him this summer, you have probably noticed how he looks like he is "toe walking" with only his right foot. Or you might have seen him with his AFO (boot) and said, "what happened?"  Because this is neurological, it does not go away with just PT and some muscle memory work, unfortunately.  This is something that Heath will have to battle with for life- that is a battle we'll all take.  The more active Heath has gotten over the years, the more this issue has caused some pain and frustration.  I am always so proud and amazed by the way he seems to take it in stride, almost as if he doesn't even notice that he can't run as fast as his buddies.  Every once in a while, my heart sinks and the tears well up when he says, "I just am not as fast as those guys..." but then he jumps right back in and comes up with a new game to play.  He certainly is a resilient little guy!

So, we'll let you know how surgery goes tomorrow.  We'd be grateful for your prayers and thoughts during that time and for the week that we're supposed to "lay low" post-surgery (everyone might need a prayer with Heath Tuttle stuck in the house on the couch for a week! whew!).

Blessings and peace.
carrie