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.