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.

March Milieux (plus April too)

For your blogging amusement, here are some AI generated photos of our family.  Of course since we made these photos, I learned that generating an AI photo uses about the same amount of energy as running your fridge for half an hour.  Crazy!  So enjoy--I don't know that we will be creating many more.

Here's our scientist Brooklyn.  We miss this girl!

Eli, looking adorable as can be as a newsie.

Woodsie Talia.

This guy's so handsome that I should marry him!

Don't know why I don't have a photo of Annika downloaded, but this one of Uncle Justin is pretty great.

And me, looking far more youthful than in reality.

Other moments in the Wheeler household: Pi day!  I made a couple of pies on March 14th.  Just as we were about to serve this chocolate meringue to company, I discovered that Zion had licked the meringue right off the edge of the pie.  Naughty pup!

Jason made green pancakes for St. Patty's day.

I can't remember what he said while speaking in church as a High Councilor, but apparently it was strange enough to cause this reaction.

That evening Talia performed with the Young Artist Chamber Players.   It was a very moving, emotional performance because their beloved conductor, Jack Ashton, had passed away just a few days earlier while these musicians were on tour in Southern Utah.

Here's his daughter Sugar (Alice) conducting in her father's place.  When it became clear that Jack wouldn't be out of the hospital in time to accompany his orchestra, Sugar filled in and took the orchestra on tour.  It was a touching moment that we will all remember with gratitude.

The next day, we woke up to snow--lots of snow!  I sure love me a spring snow storm.  Here's Annika playing with a neighbor in our backyard.  Zion liked it too.

Sledding up at Popperton park later in the day.  I don't have any great pictures, but Papa Kay was there too!

Talia decided that Zion needed to add sledding to his list of canine skills.

He tolerated it, but only once.

I blog for the memories--this is a great one to keep!

Speaking of keeping, I suppose this rascal gets to stay as well.  There have been moments (many moments?) when I have questioned my impulsive decision to get a dog, but all in all, I'm enjoying Zion's company as he settles into our home.

Zion may be on probationary status, but this rascal is permanent.  Here's Annika playing on a tractor while I attend a luncheon hosted by Intermountain Healing Hearts.  I was nervous about attending, but enjoyed getting to connect with other heart moms.  They get it.  It helps to feel less alone.

Did I mention she's a rascal?  While not really her fault, one of her recent shenanigans included getting her hair completely twisted in a spinning rope swing.

In general, Annika's transplanted heart lets her explore farther than she could before.  But sometimes hiking is still hard.  Her back really hurt during this short hike up Rattlesnake Gulch.  Only three months out from surgery, I suspect this is still part of her recovery.

While Annie may not have loved hiking, she positively adored meeting Violet and Ruby's new bunny, Marshmallow.

Another fun moment: Annika got to help fundraise for Make-a-Wish by participating in Wish Cab with iHeart Media.  Meredith and AJ are so fun!  And generous.  You can see the cute video here.

Later that day she got to hang out at Jersey Mike's as well as part of their Make-a-Wish drive with 100% of that day's proceeds going to support wishes.  We are so grateful!

It's strange the way that we find ourselves bending the "rules" for Annika post-transplant.  We took her skiing.  We traveled to St. George.  I let her hold worms.  Now, I'm pretty sure that her transplant team never specifically told us that she couldn't hold a giant fistful of worms, but knowing Annika, they probably should have.  It just made her so happy!  Not to worry--we washed hands the moment we got home.

Annika also loves spiders and wants to become an entomologist.  I bet the rest of you shared your home with a pet spider named Webeca as well.  Webeca is enormous and scary.  I've watched her viciously chase down a giant fly and win.  I suppose I'm glad Webeca is in this new habitat because when I asked Annika where she came from, she said, "Talia's bathroom."  

Check out the new scooter from NomiAnn!  Annika loves it.  Razor scooters aren't specifically on the contraband list, but perhaps they should be.  Personally, I think Annika is just as likely to crash on these sassy wheels as on her skis.

At the end of March Annika was able to attend her Girl Scout meeting for the first time in months.  The girls all had a great time hammering nails to make string art.

From left to right starting in the back we have Ellie, Annika, Lua, Violet, Mae, Cedar, Ferron?(hidden behind Nora) Front: Lily, Edith, and Maggie, and Nora.  We are grateful for this kind group of Girl Scout sisters.

As the day grew closer where Annika could back to school, we got to head up to Wasatch to meet with the school nurse.  While there, Annika saw the trophy that her RadGeekery film crew won for their film, Locker Problems.  They received the top prize for a short film created by filmmakers under the age of 18 at the Utah International Film Festival.  Way to go!

March 25th--Happy Birthday Jason!  Every day sparkles with Jason gracing our world, but his birthday is extra special.

Naturally we celebrated with cheesecake made by the master himself.

Plus, here's a delicious lemon pie that Brianna brought.  I'm drooling just thinking about it.

The best part about birthdays is that they are the perfect excuse to gather.

It makes us oh-so-happy that our families like spending time together!

I don't know what's happening, but it sure has everyone captivated!

The birthday boy himself.  He looks more handsome every year.  Sure love you, Peanut Butter!

A few days later we celebrated again with Justin, Brianna, Ruby, Violet, Grandma Susie and Grandpa Charles.  So tasty!

Happy birthday once more to the most kind-hearted man I've ever met.  Especially as I compose this on our 22nd anniversary, thank you for marrying me, amor!

Moving on to April Fools!  Oatmeal served in doggy bowls while Zion gets his kibble in IKEA plasticware.  He seemed quite confused as to why he was being invited to the table.

No explanation necessary possible.

April 2nd.  Talia gets her wisdom teeth removed.  Oral surgery is so cruel!  There are definitely more enjoyable ways to spend spring break.

Perking up long enough to buy new frisbee cleats.

Even more swollen in the morning.

No pictures please!

Pretty cute chipmunk cheeks.

"I Don't. Like. Dogs."  Or at least so says Pinocchio.

Even though Talia's mouth hurt, she still went on a stroll to see the cherry blossoms at the Capitol with me.

April 7th, 2025.  Another LANDMARK moment.  After 138 days of absence, Annika finally got clearance to return to school.  We thought we would have to wait until the 14th, so getting to return right after spring break was delightful.  Our little girl looks so grown up and tall!

A good luck hug and leap from her dog.

Of course, Annika had only been in school for ninety minutes before I had to pick her up for a doctor's appointment.  She'd been complaining how she couldn't hear.  Poor kid--turns out she had a double ear infection!

And so, we got to add a bright pink amoxicillin to our pill collection for the next ten days.  At least the girl can swallow just about anything,

Backtracking just a smidge, Jason and the younger kids went up to Hyde Park while Talia was recovering from wisdom teeth surgery so that they could watch listen to General Conference.  

They were greeted by a plethora of beautiful orchids and tasty dessert.  The sights and flavors of home. 

Literally from home.  Now that I take a closer look, I'm pretty positive that this one of Jason's cheesecakes, made to celebrate Susie's birthday.  Happy birthday, Grandma Susie!

Back to Salt Lake, it's always fun to greet the owls in the City Cemetery , especially with their fledglings in the sping.

The cemetery is currently undergoing some major renovations.  I'm just hoping that the graves are left undisturbed.

While I hope the Salt Lake Cemetery lasts a long long time, I hope the Great Salt Lake lasts even longer.  Here's Jason watching the sun rise during a hike with his intrepid friend, Daniel Thomas.  Daniel embarked on a hike/bike around the perimeter.

Jason kept Daniel company until the fence, then turned around and shuttled Daniel's car home.   A wise choice.

Talia and I went for this hike with Zion up Millcreek Canyon around the same time.  What a completely different landscape!  Also, less concern about aerial fire.

Yeah, Salt Lake is pretty awesome.  So is this brilliant gal.

A perfect moment, at least until the doggy kiss caught me unaware.

Wrapping up by thinking of Brooklyn on her mission via the Assembly Hall on Temple Square.  It always makes me smile to drive down North or South Temple and see the missionaries.

We were in the vicinity because we had tickets to the Utah Symphony with our friends, the Blackhams.  That was super fun.

But even more fun was meeting Hermana Turner, fresh home from her mission in Madrid.  This sweet gal brought a lovely package from our Brooklyn!  It made me so happy to hug someone who had recently hugged our missionary.

Brooklyn, we love you; Jason, happy anniversary; and everyone else, keep smiling.  :)