Annika's Heart Story

 A year ago today Annika was admitted to Primary Children's Hospital to wait for a heart.  My mind is swirling with so many thoughts and feelings.  Annika is doing so marvelously well that most of the world has moved on.  In the movies this is the happy end of the story--the dream come true.  And yes, in many ways, our lives have become remarkably straight forward and normal.  This year we celebrated Thanksgiving as usual with an abundance of family and even more food.  Aside from steering Annika away from the hot tub and cautioning her to avoid the stuffing that had been cooked inside the bird, her festivities looked just like everyone else's.  (Plus some fistfuls of medications, of course.)  We are so very grateful.

And yet...I'm not ready to move on.   As the parent of a heart transplant recipient, I still feel wary and guarded and protective.  Despite regular therapy sessions, I still get carried away by an undercurrent of worry about what might come next.  As another heart transplant parent stated, it's not a matter of if the other shoe will fall, but when. We hope that when will be decades from now, but in truth we don't know.  Nothing is promised and we take nothing for granted.

The other day I asked Annika if she thinks a lot about her heart.  She said no, but told me that she does think a lot about her donor.  I imagine the holidays must be so hard for this family.  I'm sad that they had to celebrate Thanksgiving without their loved one.  As we look forward to commemorating Annika's "Heartiversary" in a couple of weeks, we recognize that our day of hope and gratitude is intertwined with sorrow and loss.

Wanting to honor the complicated journeys of Annika's two hearts, I decided to create a place to remember.  I've compiled many of the posts surrounding Annika's heart story into a single blog: annikasheart.blogspot.com.  When learning about the challenging transplant journeys of others, I'm often tempted to compare and feel like our path has been too easy.  But maybe it's more like childbirth and we simply forget.  Looking back through Annika's journey I am reminded that her story is far more nuanced and challenging and complex and marvelous than I remember.  We've been through a lot.  Painful as the words are to read, I appreciate the chance to relive the struggles because through them I re-experience the miracles.

Writing Annika's story has been therapeutic for me. Perhaps reading her story can help for someone else.  Above all, may we all remember that we are not alone.

***

In looking at the calendar, most people recall birthdays and holidays and anniversaries.  Thanks to Annika's heart story, Jason and I recall so many more dates, especially during December.

December 1, 2023: Annika's Make-a-Wish. 

December 2, 2024: Annika is admitted to Primary Children's to wait for a heart.

December 12, 2024: We receive "the call."

December 14, 2024: Heart Transplant

December 15, 2023: Annika's ICD is replaced.

December 17, 2024: Emergency bedside surgery to reopen Annika's chest to stop bleeding

December 23, 2022: Annika's initial cardiac arrest and crash onto ECMO.  

December 28, 2024: Annika comes home from the hospital with her new heart.

January 4, 2023: Annika's first ICD is placed.

January 7, 2023: Annika comes home and we celebrate Second Christmas

January 18, 2024: Blip #2 

July 3, 2023: LifeFlight to Primary Children's

November 20, 2024: Blip #3.  Three strikes and you're out--we are readmitted to Primary Children's.

Sometimes it's strange to realize all we don't know.  As we left for Annika's Make-a-Wish in Hawaii, I never would have imagined that she would be in the hospital waiting for a heart a year and a day later.  When they replaced Annika's ICD, I had no idea that it would save her life twice before being removed 364 days following her transplant.

In many ways, I'm grateful for the unknown.  Oblivious to what's coming, I usually can set worry aside and live life to the fullest.  However given our recent history, I'll be relieved when we make it through the month of December without any drama.

From a Wasatch Star to a Hillside Husky: Annika's 6th Grade Promotion

 This past June Annika graduated from Wasatch Elementary School.  Believe it or not, that almost didn't happen.  Our family seriously contemplated retaining Annika and repeating sixth grade since she missed half of the school year, not to mention all her absences the prior two years.  Even though Annie was doing fine academically, we wondered if socially and emotionally she might benefit from an extra year.  Plus, Annika adored her elementary school and didn't want to leave!   Her longing to stay speaks volumes about how loved and supported she felt at Wasatch Elementary.  Ultimately we decided that even though middle school can be scary, she was ready.  In retrospect, this was a good choice.  She's doing well as a Hillside Husky.  Still, we are grateful for her seven lovely years as a Wasatch Star.

I already blogged a bit about it, but Annika nearly missed her sixth grade promotion because she was having such intense stomach pain.  Fortunately she got feeling better just in time to waltz in the door ten minutes before the ceremonies began. 

Talia came to the rescue by bringing Annie her new dress and doing her hair.  Annika's vein sprung a leak after they took out her IV, but we were in such a rush that we left anyway.  Priorities.  :)

Last to arrive, she was last in the processional, accompanied by her teacher Mr. Fearick.

The baby picture section was one of the best parts of promotion.  Gosh, this crazy-haired gal was a cute babe!  She was also one of the speakers and shared a great message about how we can smile through hard things.

A congratulatory handshake from her other marvelous teacher, Ms. Birdwell.

Gosh, my mama heart smiled when she stopped to give me a hug during her march out.

A proud papa too.

Smoochie sandwich!  NomiAnn and Papa Kay were so delighted to celebrate this milestone with Annika as well.

They even gifted her the aloe vera plant of her dreams.  This gal loves all living things.

Annika, you and your friend may have shared the same adorable dress, but you are one-of-a-kind.  We love you so much and are so proud of you!

Annika's final foray as a Wasatch star, cheered on by so many teachers she loves.

Now enjoy your time as a Hillside Husky.

Donor Connect

At the end of April our family attended a Donor Connect event at the Utah Cultural Celebration Center. The event celebrated the many heroes who have given life through organ donation. Recipients were invited to participate too. Kind of heavy stuff, but they kept it light with a fun, carnival-like atmosphere. Nothing says Utah like a dirty soda bar!

Here's Annika getting her face painted.  Blue and green are the colors of Donate Life so she dressed accordingly.

Can't forget the balloon animals!

Rock painting time.

Thinking about the gift granted us by Annika's organ donor, anything else seems trivial. Every day we are grateful. I wish I could hug her donor's family, cry with them, and thank them for giving her a fresh start.

Next Level Hard

  It's been a long while since I last blogged--my apologies.  In truth, it's been a tough summer.  We'll get back to the cheery posts soon.  But first, I wanted to take a moment to be real.

For a long while now, Annika has felt miserable.  She's experienced nausea, abdominal pain and mouth sores off and on for several months.  While the pain hasn't been constant, there have been very few days where she hasn't felt sick for a substantial part of the day.  When I look back on Summer 2025, the image I will remember most is that of Annika curled in a ball and moaning on the couch.

There have been so many heartbreaking moments.  Annika counting down the days until Dungeons and Dragons at the library, only to call for a ride home early.  Annie curling up with her head in my lap instead of running around with her best friends at the zoo.  Getting picked up from overnight troop camp after an hour instead of getting to horseback ride and do the high ropes course.  Missing out on playing with her cousins.  Feeling too sick to walk Zion.  Leaving the table meal after meal with her plate untouched because it hurt too much to eat.

I generally disapprove of crass language, the most truthful way to sum it up is to say that it really sucked.  

I have often fought back tears, wondering whether we made a terrible mistake in proceeding with transplant. Pre-transplant Annika's activity was limited and she experienced pain when she exercised.  But in recent months she's been even more limited and felt sick almost all the time.   The transplant medications are absolutely critical, but at times it felt like we were poisoning our daughter.  

I think the only reason I can share all this is because we've finally found a medication that helps.  We've run a gazillion tests and still don't know why Annika is experiencing so much abdominal pain.  However, between an aggressive regimen of cyproheptadine for her stomach and dexamethasone/triamcinolone/lidocaine for the mouth sores, she is finally functioning again.  Watching Annika reengage with the world has brought so much hope to our family.  Two weeks ago, we questioned whether she could make it through a full-day of school.  Now we are all excited for her to begin seventh grade with her peers.

In coming posts, I plan to capture all the happy that happened this summer despite Annika's health challenges. But before I do, here are some photos of her struggle.  Remembering the hard times makes the joy of recovery particularly sweet.

Here's Annie following from her six-month cath. Because they accessed her heart through her groin, she had many hours of "flat time" followed by a migraine.  Poor kid.

One evening she felt up for a scooter ride up City Creek Canyon with Zion...

...but soon found her stomach hurt too much to continue.

Eventually she was so miserable that we took her to the pediatrician, who reached out to Annika's heart team.  By the end of the day the transplant team told us we needed to report to Primary Children's Emergency Department.  Of course, by this time Annika was actually feeling much better so we stopped off for some grapefruit gelato from the outpatient side before checking in.

I'm sure the emergency physicians were confused by this chipper tween coming in to get checked out for abdominal pain that wasn't currently present.  In the end, the x-ray and bloodwork didn't show much beyond some elevated inflammatory markers.

After a few hours the tummy pain came back.  Dang it.

The nausea and abdominal pain were no fun, but the mouth sores were torturous.  Sadly, the mouth sores are a known side effect of everolimus, one of her anti-rejection meds.  We could switch her back to myfortic, but everolimus offers some long-term protection for the kidneys and coronary arteries.  These are such tough decisions!

It didn't help that one of her prescriptions to treat them was on long-term backorder at the pharmacy.  We finally located some by calling around, but by that point the sores were already terrible.

Here's Annika gathering up her stuffies after calling for a ride home from camp.  (Thanks for the rescue, NomiAnn and Papa Kay.)  I was a parent volunteer and still had to stay with the troop, but it was pretty sad to be there without her.

Here she is feeling under the weather at an outdoor concert.  By this point, we were all really worried.  Annika's physical health was really starting to impact her mental health as well.  After years of enjoying Annika's exuberance, the world felt wrong with Annie depressed.

Desperate, we finally pulled some strings with Uncle Justin and got Annika into the GI clinic at Primary's.  We met with a doctor on Friday and scheduled her for an upper EGD scope (esophagogastroduodenoscopy) on Monday.

A little scary, but she did it.  She was quite happy that she could have flavored gas (tutti frutti) before getting her IV placed.  Unlike during other procedures, I was invited into the room to hold her hand as she drifted off to sleep.  I got so emotional watching my little girl go under anesthesia.  Even though I knew this was a safe and quick operation, I also understood that they would soon be shoving a camera down her throat and snipping tiny pieces from her esophagus, stomach, and duodenum. I felt overwhelmed by how much this child has been through.  She's a trooper, for sure.

When Annika's procedure was over, they called us into a "consult room" and I totally flipped out.  In my mind, you only get called into a consult room if the news is BAD.  (Like when they took Jason and I into a conference room to tell us Annika might need a transplant.)  But apparently this is just standard protocol for the Children's Procedural Center.  I was super relieved to learn that nothing major was going on.  However, in a bizarre sort way I felt equally disheartened when they told us that everything looked "stone cold normal."

Because, this.  Whether her gut looks great or not, something was obviously wrong.

I wish we had answers.  We don't.  But we have an effective treatment, and I'm going to take that as a win.  Life is happy again.  Plus, Talia took one for the team and told Annika that she could douse her with water if it would make it feel her feel better.  It definitely did.

Turn around is fair play.  Sure love this family!  And so glad you're feeling better, Annie Mae.  We love you!

P.S. In those moments when I question the necessity of Annika's transplant, it's important to remember that the biggest concern was that her heart would stop completely.  The road we are on may be challenging, but it's better than the alternative.  God pretty much sent a personal telegram that we needed to do this,  As always, we are so grateful to Annika's donor and all organ donors for making life possible.

Caring for a Special Heart

 Annika is currently in cath lab getting a heart biopsy.  We are nearly at the six month mark post-transplant, so this procedure is a big deal.  This is the first post-transplant catheterization where they access both the right and left sides of the heart, looking at the coronary arteries as well as general pressures.  To get to her heart, they will have to go in through her groin instead of her neck, so her recovery will be slightly longer as well, requiring hospital "flat time" that hasn't been necessary for her prior caths  at 2weeks, 4 weeks,  6 weeks, and 3 months.  Assuming all goes well, Annika won't be back in cath lab again until the one year mark, sometime around her "Heartiversary."

Here she is waiting to get called back.  Annika wasn't happy about getting out of bed this morning, but was super pleasant and talkative once we arrived.  She convinced the anesthesiologist to sing "Let it Go" as she drifts off to sleep.

Vitals, then switching into hospital clothes that are WAY too big.

As for myself, I'm feeling lots of emotions right now.  I brought plenty of schoolwork to keep me occupied, but I can't concentrate on anything besides this special heart journey.  Today I am particularly mindful of Annika's donor and their family. I feel immense gratitude for their gift, looking outward to others from the depth of their loss. I am grateful that Annika's healing and recovery has been relatively uncomplicated, allowing her to live life fully.  Following the heart journeys of others makes me keenly aware of how very blessed we are. 

But if I'm completely honest, I also feel a little scared.  Nowadays, I always feel a bit worried and anxious.  It's hard to accept that transplant is a treatment, not a cure.  Even though this transplant is an answer to prayer and a literal miracle, it's still not what we hoped for.  Once you've had your first transplant, the question isn't if you will need a second, but when.  And if a second transplant doesn't happen, it probably means you were too sick to be eligible.

But hey, good news!  I just heard back from the cath lab and Annika's heart looks great today.  Her filling pressures on the left side are a little bit high, but stable from the prior cath readings.  We also learned that her coronary arteries on the right are smaller than typical, but there are no occlusions and they are functioning well.  Once again, we are grateful for the blessings.

I'm still waiting to be called back to the PACU to see Annika, so let me share some more of our heart journey in the meantime.  

***

Taking care of a transplanted heart is a lot of work, but worth it.  Annika has blood draws once a week on average.  Sometimes they space out to every other week, but if anything is going on, she has to come in more often.  Blood draws usually mean an early wake-up because they have to take blood at trough when her medication levels are lowest, typically right before morning meds.

 

At least we reward her with breakfast from the hospital cafe.

Annika's neutrophil count (a kind of white blood cell) has been consistently low, so we've had to give her a few injections at home to help boost her immune system.  Even though I am a nurse, Annika is not a fan of me giving her shots.  Jason finally had to pin her down while I gave her a quick jab.  Drama and trauma all around.  I'm hoping not to repeat anytime soon.

Never thought our home would have a Sharps container.

Here are some photos from our 3 month cath on March 14th.

So sleepy.

After a long day, Annika seeks some comfort from the giant bear on our way out.

At three months we were able to cut back on Annika's medications quite a bit.  Hard to believe that this pile is less, but we are moving in the right direction.

However, this cath also detected some low levels of Class II DSA (Donor Specific Antibodies.)  This meant that we needed to begin three months of IVIG (Intravenous Immunoglobulin) therapy.  Getting IVIG is an all day affair.  The first time was best because pet therapy and our New York family came.  I've shared these pictures before, but wanted to include them again.  Janet, Alesia and Greg, thank you for being there!

Next round was May 12th.  Did you know IVIG gets super bubbly?

Back again on June 9th.  Another long day, but at least Annika didn't get a migraine after, as happened the other two times.  Plus, she got to play Minecraft for hours.  In a month we will retest, and if Annie's DSA levels have dropped, we might not have to come back for more.

Physical proof of her special heart, alongside some special keloid scars.  I hope Annika feels proud of her bravery lines--they share a beautiful story.

Annie picked up some sort of stomach bug on the Friday before Memorial Day.  Nausea, vomiting, diarrhea, loss of appetite--poor girl felt really gross! We knew she was seriously under the weather when she wasn't interested in looking for bugs as we camped.  On Thursday, May 29th she woke up with so much abdominal pain that we took her into the Emergency Department.

While there, she started to feel better and even ate a bowl of macaroni and cheese.  They did a bunch of tests and then discharged us just in time for Annika's sixth grade promotion.

Sweet Talia brought Annika's clothes up to the ED and braided her hair so that we could go straight to the celebration.

In the end, we made it with five minutes to spare.  Hurrah!  This special heart may require a lot of care, but it lets this sweet girl share the love.