A Hopeful Heart

On my phone, I have a picture of Annika's old heart.  (I'd post it, but that seems a little much, even for me.)  Last week Jason ran into Annika's cardiothoracic surgeon while Annie was getting labs drawn.  Dr. Hobbs remembered that Annika had requested to see pictures.  So he pulled them up and shared them, right then and there.

It is the strangest thing to see Annika's heart laid out neatly on a blue surgery towel.  It's deep red with lots of orange streaks running through.  The shape resembles a red pepper more than the iconic heart symbol.  Annika thought it looked gross, but my first impression was simply how small it appeared next to the surgeon's fingers.  That little heart took her many beautiful places, but it was struggling.  Today she can run and jump and skip and dance, all because of her donor's gift.

A gift--is that the right word?  A gift feels like something you might purchase from the store.  Gifts convey appreciation and love, but they are typically external.  Donating an organ is more than a special gift--it is giving of oneself in the most intimate way possible.  It's a gift that a person or their loved one never wishes to give, yet it is still given willingly.  Hope and life spring from sorrow and death.

Life--these days Annika is overflowing with life.  It wasn't until she received her new heart that we fully understood how much she was struggling.  We notice it in so many little ways.  Confronting a big set of stairs, she darts right up instead of begging to take the elevator.  Walking through the neighborhood is joyful instead of miserable.  Hiking is fun and she can run up the hills.  The difference is astounding.  When I asked her to rate how her heart feels now versus how it felt before on a scale of 1 to 10, she said it changed from a 3 to an 7. Without having something "normal" to compare to, I don't think she understood how bad she felt.

In my opinion, hearts are extra special organ donations.  Hearts are attributed with the essence of a person--the core of their beliefs, longings, memories and desires.  Hearts are embedded in our language: a broken heart, a heart of gold, your heart skips to beat, have a heart to heart.  We simply don't talk about our kidneys and livers in the same way.  Hearts are equivalent with love.   

In contemplating Annika's transplant, I often think of it in a spiritual, religious context.  I have no way of knowing if her donor was religious, so I hope this is respectful, but I simply can't think about Annika's heart without thinking of our Lord, Jesus Christ.  Death brings new life.  What was broken is made whole through willing sacrifice.  Annika has physically experienced what we are all striving to achieve in a metaphysical sense.  Recently I was brought to tears as we sang the fourth verse of the sacrament hymn, "With Humble Heart."

As I walk daily here on earth,
Give me thy Spirit as I seek
A change of heart, another birth,
And grow, dear Lord, to be like thee.

At some point I would like to do an in-depth study of heart references to hearts in our scriptural canon.  In the meantime, here are a few beautiful verses that I discovered while studying Alma 5 this morning. 

7 Behold, he changed their hearts; yea, he awakened them out of a deep sleep, and they awoke unto God.

12 And according to his faith there was a mighty change wrought in his heart.

14 And now behold, I ask of you, my brethren of the church, have ye spiritually been born of God? Have ye received his image in your countenances? Have ye experienced this mighty change in your hearts?

26 And now behold, I say unto you, my brethren, if ye have experienced a change of heart, and if ye have felt to sing the song of redeeming love, I would ask, can ye feel so now?

Annika has experienced a change of heart in every beautiful sense.  She has remarkable faith.  Her faith is unique because she expresses it so simply and matter of factly with no pretense.  On our way to Primary Children's today (she's currently in the cath lab), she told me that she really hopes Jesus comes again before she gets married so that she won't have to worry about passing her heart condition on to her kids.  Her question is not whether Jesus will come again--she is certain He will--she only wonders when.  She fully believes that her imperfect body will be made healthy and whole.  What has been lost will be restored, and the dead will live again.

My faith may not be as complete as my daughter's, but I believe.  Mine is a working faith that evolves each day as I struggle to be a better disciple.

While Annika was in the ICU this Christmas, I listened to  "Glory to the Light of the World" by Lauren Daigle over and over again.  Here are a few of my favorite lyrics.

The world waits for a miracle
The heart longs for a little bit of hope
Oh come, oh come, Emmanuel

The drought breaks with the tears of a mother
A baby's cry is the sound of love
Come down, come down, Emmanuel

For all who wait
For all who hunger
For all who've prayed
For all who wonder
Behold your King
Behold Messiah
Emmanuel, Emmanuel

"The world waits for a miracle.  The heart longs for little bit of hope.  Oh come, oh come, Emmanuel."  I can't say it any better.  Despite learning about the Second Coming for my whole life, never have I longed for it as I have in recent months.  Our world is deeply troubled.  Never have I felt so concerned about our nation.  My daughter's heart, while healed, won't last forever.  I can't solve these problems, but the Prince of Peace can.  Oh come, Emmanuel. 

Welcome to Zion

 Last week I did a thing.  An impulsive thing.  Quite possibly THE most impulsive thing I've ever done in my life.  

I took Annika to the humane society "just to look around" and came home with a dog.

To fully understand the context, you have to understand, it had been a week.  In fact, it had kind of been a month--almost exactly a month since Annika's heart transplant.  On Monday, January 13th she had her first catheterization/heart biopsy to monitor for signs of rejection since coming home from the hospital.  While all went well, we had to check in at 5:45am and didn't make it home until late in the afternoon. 

At one point in time I would have considered inserting a tube to take out pieces of her heart for testing to be a pretty major procedure.  After all, there's anesthesia, an IV, post-op monitoring, etc.  Yet in another sense, we've been to the cath lab so often that it feels pretty commonplace.  Annika had a biopsy at two weeks post transplant, this cath marked four weeks, and we will have a six week cath on Thursday.  Over time our visits to the cath lab will space out, but for the time being, this is just standard protocol for our world.  

While there, we took a few pictures of her scars.  They are healing up so nicely!  During Annika's transplant surgery, the surgeons cut out some of Annika's keloid scarring after removing her ICD.  We are hopeful that it will heal better this time around since she is taking such high doses of steroids.

Annika gave permission to post this photo of her transplant scar as well.  I think it looks pretty great, especially considering how they had to reopen her a few days later for an emergency exploration of her chest cavity.

So yeah.  That was Monday.  On Tuesday Jason and I had an important meeting with Annika's school principal to discuss educational options since Annika is missing so much school.  Following that, I spent the next eight hours shadowing an outreach nurse educator as part of a 45 hour leadership clinical.  To tell the truth, I've found it super hard to get motivated with school this semester.  I will be SO glad to be finished with my BSN (Bachelors of Science in Nursing).  I'm only taking one class this semester, but it is still plenty.

On Wednesday, we checked into a different hospital (IMC) so that Jason could have a repeat ablation with Dr. Miller due to some continuing arrhythmias.  As a bit of backstory, on January 9th Jason had a regular appointment with his cardiology team where they grabbed an EKG at the very end.  Looking at his rhythm strip, the EKG Tech said, "Well, you're certainly not boring!"  

Dang it.  When it comes to heart rhythms, boring is good.  Anyway, Jason was told that he needed to hang out a little longer so they could talk to electrophysiology right away.  Fortunately the arrhythmias were nothing life-threatening, but still needed to be addressed.  They scheduled him for an ablation the very next week.  We just can't get enough of the cath lab!  

The first time Jason had an ablation, the funky rhythms completely disappeared as soon as they gave him anesthesia.  Usually this would be great, but in this circumstance, it's difficult to pinpoint which rogue cells are malfunctioning if they've stopped misbehaving.   So this time, Dr. Miller's strategy was to give Jason no anesthesia at all!  Seriously, aside from a bit of lidocaine at the insertion sites, Jason was completely awake the whole time as they burned multiple areas, trying to create scar tissue to disrupt the wayward electrical signals.  He managed to hold perfectly still, even when the first round didn't work and Dr. Miller inserted two more catheters for round two.  It might not have been comfortable, but I think Jason enjoyed three hours of conversation and swapping Dad jokes with his doctor.  In turn, Dr. Miller said Jason is the nicest patient he's ever had.

This may look like a propofol smile, but the goofiness is all natural.  How I love it!

Annika said it was kind of weird to not be the one in the hospital bed, so she climbed right in.  

By the time we finally got home from our second cath lab visit of the week, it was past 8 pm.  I was totally ready to be done with doctors, but alas, Annika had to be back at Primary Children's for labs at 7:30 the next morning, followed by an echocardiogram at 9:00 and an appointment at 10:00.  We filled the wait time by browsing for goldendoodle puppies on KSL.   

You see, nearly a year ago Jason told Annika that if she ever had to get a heart transplant, she could have a dog.  Even though Jason immediately regretted his words, Annika certainly remembered his promise.  And so, we'd been half-heartedly looking around, although we always ended our searches by reminding ourselves how we really didn't want the long-term commitment of a dog.  

Still, after dropping Jason off at work at 11:00, I pitched a crazy idea to Annika: "How about we swing by the Humane Society, just to look around?"  I was done with hospitals and doctors appointments and the entire medical world.  More than anything, I wanted normalcy in our lives.  I wanted to identify as more than a heart family.  Confined to a small geographic radius with a bazillion rules, I wanted spontaneity.  I wanted freedom.  I wanted change.

And so we walked in.  I'd never been inside the Humane Society before, but I told Annika that no matter what, we were just looking around.  I went to the adoption desk and explained how I had allergies, so we were interested in a small doodle mix because they don't shed much.  Unsurprisingly, there weren't any goldendoodles up for adoption--however, we were welcome to look around.

As we entered Dogtown, this was the very first face we saw.

And this is the pup we came home with.

It was love at first sight.  And SO impulsive.

Annika and I looked at all the dogs, including eight little blue heeler/shih tzu puppies from an accidental litter.  But it was only "Clem" that we took outside to play.  I loved the giant ears, the white stripe down the nose, and the idea of having a dog big enough to hike and run with.

Annika was enchanted.  I texted a few pictures to Talia and she immediately skipped class to come down to the shelter.  I also called Jason who admitted that the pup was cute, but not enough to want to come see him.  He left the decision completely with me, reminding me that there was always a couch in his office where he could sleep...

This is the point where I really should have let logic take over and stepped away to think and converse more with my hubby.  Instead, I succumbed to the begging of these girls who both desperately want a dog. With one headed off to college and the other recovering from a heart transplant, they have me completely wrapped around their little fingers.  I simply couldn't say no.  After all, it had been a week.

Driving home with "Clem" all on my own.  Talia had left a little earlier so that she could get Annika home for tutoring.  I think my manic eyes show just how frazzled my brain!

Clem started in the trunk, but before I knew it he was riding in the passenger seat.

All of a sudden I felt this wet willy in my ear!  Ew.

Judging by the smile, I think he thought it was funny.

Imagine Eli's surprise when he came home to a family pup!  He's become a very quick fan.

Settling in.  We decided pretty quickly that "Clem" needed a new name.  It took a few days and some iterations, including Pepé and Coda, before we finally landed on Zion.  Brooklyn cast her vote from Spain, making the final decision 4:2.

Zion, you're pretty cute...

..but you definitely shed more than a Golden Doodle.

Eli takes some pictures, while I get an action shot.  Zion has hops!

Puppy love.

The transition to life with Zion has been a pretty major change.  He's struggling with house training and jumps up when excited or if he wants attention.  He can be a bit mouthy when overstimulated.  While we think he will like running, you practically have to drag him for the first few blocks, especially if it's dark and cold.  He seems scared of men, probably because his prior owner used to discipline him with a rolled up newspaper.  He is obnoxious around a broom or vacuum, positively flipping out and attacking them with a vengeance.  That might not be such a big deal, except he shreds soft toys, leaving lots of mess to clean up.  At least he's only ruined his own things so far.

On the positive side, it's never been easier to convince Annika to go out for a walk.  The movement is perfect for her recovery.  

By the way, I forgot to mention that our friend Stephen James suggested the name Radar because of the fantastic ears.

My hope is that Zion will be great for all the kids' mental health as well.  No matter how bad the day, you can come home and know that your dog will love you.   

Jason is still adapting--me too, if I'm honest. We both had pretty strong reservations about becoming dog parents.  Having a dog is a lot of work, and we weren't sure we wanted to give up the freedom to leave town on a moment's notice.  However, Zion is crazy sweet and really loves Jason.  I'm pretty sure that Jason rather likes him too. 

We are still in a trial period, but Zion is a great dog--intelligent, observant, silly, sweet, and eager to please.  He's active, but then again, so are we.  I think he'll be a great companion out on the trails.  When it comes to being on trial, I'm pretty sure the ones being tested are Jason and myself.  If we can handle the commitment, Zion will be the perfect addition to the family.  Welcome to our home, Zion!

Christmas Collage

 As much as I wished that we could be home for the holidays, our Christmas at Primary Children's was still lovely.  This sweet sign was made by Annika's Primary friends and teachers.  What a cheery sight to greet us!

This ice sculpture outside of the playroom was fun as well.  I suspect it got sculpted while we were in the ICU, but started to melt quickly given the warmer temps.

Giving gifts is just as fun as receiving them, so we made some snowflakes to share.  I was pretty proud of my snowmen and trees.

Even more impressive is Talia's creation.  Can you spot the stormtroopers?

Annika got an early Christmas present from the Ronald McDonald Room on Christmas Eve.  While the packages were wrapped, this one said "Pony" on the outside, so she knew it would be something that she would love.

Annie also loved the food we brought food back for her.

Spending time with family was just as much of a treat.  We were only allowed two visitors in her room at a time so we met in the lobby.

That evening Annika and I ate sushi for Christmas dinner while everyone else ate at the cabin.

Falling asleep on Christmas Eve is never easy, but traditions help.   We read Luke 2, the Night Before Christmas, and Jabez Dawes, just like we would at home.  Annika was a little distressed that we hadn't left cookies and milk for Santa, but I assured her that it would be okay.

December 25th.  Merry Christmas!

Santa filled our stockings and brought gifts for the entire family!  Thanks to the town of Fairfield, there were extra special surprises under our paper tree.  I still feel so humbled and grateful for all this love from people we've never met.

Squishmallows and sushi.  Someone knows our Annika!

Whatever could be in this package?

Talia was ecstatic about her Chucks.

Legos for the win as well!  Always.

Out of her many packages, I think Annika has been most excited about her ant farm.  After all, the doctors never told her that she couldn't have ants!

Rubiks cubes, Owala water bottes and art supplies.  What a great Christmas!

We slipped away from our room for a little while to listen to the beautiful Christmas caroling.  This family is amazing.  They work in the School Zone and provide the music for Primary Children's sacrament service every week.  Plus, they provide expert advice on 3D printing as well.  

Santa stopped by as well.

Best of all, the Wheelers came that evening so that we could enjoy Christmas dinner and open presents together.  Annie was so very happy to see Ruby again!

Naturally there was pie--all the pies!

We didn't take any group pictures since we were trying to social distance but Justin, Brianna, Ruby, Violet, Christy, Ben, Lance, Austin, Charles, and Susie were all there.

Amazing look, Eli!  The ski tie suits you particularly well.  

December 26-27th.  I don't have very many pictures from our final days at Primary Children's.  I was mostly focused on moving on and getting home.  I did snap this photo of our first time filling Annika's pillbox.  That's a lot of medicine!

Child Life brought by this delightful Little Mermaid Lego set.  I think I was even more charmed than Annie.

Annika had her first post-transplant biopsy and catheterization.  She handled it beautifully and everything looked great with heart. Annie enjoyed breaking up with her IV pole Steven as well.  Theirs was a close relationship, but thankfully it didn't last long.

Saturday, December 28th.  Annika walks out of Primary Children's Hospital at noon, just 26 days after walking in.  While an outsider might think that she looks the same, inside she is very much changed.

As she left, she carried a tiny poinsettia that she rescued.  When she first found the abandoned plant, its leaves were all wilted and drooping.  As she brought it into her room, the nurse commented on how she wasn't sure that it could survive.  Well, Annika watered that little plant, placed it by the window, and named it Hope.  By the time we left, Hope was thriving...

...and Annika was too.

Whether your holidays were challenging and fraught or shining and bright, we wish you Hope to light your way into the New Year.  Merry Christmas.