Be Near Me

Happy Winter Solstice! It's December 21st, a day to cozy up by the fireplace with a mug of hot chocolate, finding contentment in the dark as we feel grateful for the light. While the darkest day of the year here in the northern hemisphere, I feel comfort in knowing that from here the days will gradually grow brighter.

Over the past couple of weeks I've struggled to feel inner peace and contentment.  All of the anniversaries have hit harder than I anticipated. Joining Eli at his robotics competition on December 13th, I kept thinking about how I couldn't be there last year because Annika was in surgery having her heart replaced. I wondered what it was like for him in 2024, fiddling with robots like the world was normal, even as his little sister was being kept alive by a heart-lung machine. This year was so different as she came to support Eli (his robot won!), literally running laps around the school when she got bored.

I had a similar experience yesterday when I went to pick up a prescription at Primary Children's. It was a Saturday morning and I could see two families gathered around tables in the lobby. I could sense that the emotions were tense at one of the tables where the mother was absent-mindedly fidgeting with her necklace, her mind lost in deep thought. I instantly recalled the December Saturday where we waited for Annika's heart at that same table in that same lobby. Stranded in a strange space where we'd been booted from our room on the floor but without a room in the ICU, we gathered there and waited and paced and prayed. I wanted to hug that Mom and tell her that everything will be okay. But in truth, how can we know? If you step back and look with a long-enough lens, everything will indeed be okay. But here and now, there is sorrow and struggle aplenty.

For Annika's December 14th "heartiversary" we collected rocks from the foothills and decorated them with colorful pictures and messages. It's not a lot, but we wanted to share the love of her donor and their family in some small way. I hope the rocks make someone happy. Collecting and painting them has been therapeutic in its own way. In fact, yesterday I gathered more stones so that we can continue the tradition in remembrance all year round.

Each time I light a candle I think of Annika's donor. This time of year, our home has been FULL of candles. I acquired a new Advent wreath for our family, and my favorite time of day is in the evening when I light the candles, turn on the Christmas tree, dim the lights, and just take a moment to reflect.

There is so very much to think about. I reflect on the joy I felt the morning after Brooklyn came home when we all gathered at the dining room table and there were no empty chairs. My eyes filled with tears as our family finally felt complete and whole. My heart overflowed with joy, even as it remembered and held space for so many other families who are mourning empty chairs this Christmas season. Hearts are miraculous organs; those four little chambers hold love and light and life and loss all at the same time,

Faith carries me through these times. I am grateful for the assurance that we can be reunited after this life, and in heaven there will be no empty chairs nor broken hearts. This season I am reflecting more fervently on Jesus Christ as my Savior and Redeemer.  In Away in a Manger we sing, "Be near me, Lord Jesus." But in The Chosen, it is Jesus who pleads with his disciples as he enters the Garden of Gethsemane: "Be Near Me." Be near me, O Kara, I ask you to stay close by me forever, and love me, I pray.  "And my free spirit cried, I will."

More than anything else, I believe Jesus wants us to come to him and accept his gift, as so beautifully encouraged in this year's Christmas devotional.  This language "accept" feels particularly poignant in the context of transplant. When someone is listed for transplant, they may "receive an offer" of an organ. The transplant team then evaluates the heart to determine if it is a good match, considering size, health of the heart, health of the individual, risk factors, age, blood type, antibodies, etc. If the match seems favorable, the team will "accept," but it's challenging for all those stars to align. We know that Annika's transplant team turned down multiple offers before accepting her current heart. It's a good match, but like any transplant, it's not perfect.

Jesus Christ's offering is perfect. His heart is without flaw, and he has already died so that we may live. Will we accept his gift? He is the Light of the World, bringing hope in the very darkest of seasons. The rock of salvation, he is ever present with his arms outstretched to comfort us in the moments when we are scared or discouraged or anxious or alone. He wants us to look unto him and live. But when I pray "Be near me, Lord Jesus," it is I who must rise and draw close.

First Annual Cath

Today is heart cath and biopsy day. Being back here at Primary Children's in December feels both familiar and strange. Yesterday marks a year since Annika's transplant. As we've been moving through pre-op, recovery and post-op, the nurses keep reporting that Annika is here for her "yearly cath."  Being a tween, I think most assume that she has had multiple. While it's true that we've had our fair share of cath procedures over the past year, this annual check-up is still a first for us and feels like a big deal. In truth, listening to other heart transplant families, no matter how many years it has been, every cath feels weighty. This is where you get an in-depth look at the health of the transplanted heart. How are the coronary arteries functioning? Any signs of rejection? What do labs reveal about the health of the other organs?

Overall, the news seems positive. Annika's coronary arteries look great. Rejection can cause narrowing or hardening of these arteries, but hers look beautiful. It's pretty fascinating to do a side-by-side visual comparison see how they perfuse compared with six months ago. Her left coronary arteries are dominant--far more extensive and robust than the arteries on the right side, but both sides seem to be doing a great job providing circulation to the heart itself. The wedge pressures in her pulmonary arteries are on the high side (16/17) but they haven't changed significantly since her last cath, so the team doesn't seem particularly concerned.

Looking at her labs her white blood cell count is low (this is expected given the immuno-suppressants), but not more than usual. Magnesium is also still low, despite the fact that we've been doing oral supplements. I was surprised to see that her hematocrit/hemoglobin/red blood cell counts are significantly lower than last time. Her blood glucose is also high and her protein low. It will be interesting to see if her team has anything to say about any of these tests. Given the number of medications that she is on, it's common for labs to flag as "abnormal" but still be within an acceptable range for transplant. Either way, I'm hoping to focus on quality nutrition at home with more healthy whole foods and less refined sugar. Oh, and DEFINITELY better hydration. Annika is not great about drinking water. She's especially hesitant since starting Lasix a few months ago, and it's reflected in her kidney labs. Her BUN popped slightly above range at 20 with this lab draw, which worries me. I'd really like to keep those kidneys happy.

Okay, enough nerdy medical stuff. I'll keep you updated if we learn anything significant.

In the meantime, how about the funny stuff? Despite having to report to Primary's at 5:45 am, Annika woke up extremely happy and chipper. She arrived with a smile and her two dragons, Toothless and Chloe. She also came equipped with printed lyrics to Your Idol from K-Pop Demon Hunters to pass out to the cath lab team. She was quite insistent that her anesthesiologist sing to her as she drift off to sleep and told everyone her plan. Fortunately Dr. Christensen and Dr. Mary-Hunt Martin were great sports. She trotted off into the cath lab with a huge smile, and when Jason peeked in on her, she was literally standing on the table as she adjusted positions. What a hoot! This kid is a riot. The stories everyone must tell...

Waking up from anesthesia is less fun, but thanks to Sprite and slushies, she now feels up to eating her shrimp linguini. I'm so grateful that Primary Children's is a space where she feels safe and cared for. Her cardiology team just stopped by and gave us the two thumbs up to go home!  We will continue to have follow-up appointments every three months, but with a little luck we won't be back in cath lab until December 2027. We are so grateful to her donor and everyone who helps care keep this special heart beating. 

No-Drama December

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 3, 2024: A formal letter from UNOS informs us Annika's status on the waiting list is 1A

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.

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.

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.