First Period

Last night Annika started her first period. We are staying at my Aunt Janet's home with a horde of women: my two teenage daughters, my cousins, my sister, my mother--and apparently everyone started to sync up. Annika's body must have wanted to join in the fun because I suddenly heard her holler from the bathroom, "Moooommmmmmm! Mom! Mom! I need you!" I immediately knew what was going on--as did the entire house. Not shy at all, Annie wasn't embarrassed in the slightest. If anything, she became extremely chatty and hyper. She was so ramped up that she couldn't sleep and eventually crawled into bed with Jason and me for the rest of the night. Growing up is such a strange space--officially a woman, yet still wanting to snuggle with her parents. 

I was the same age when my first period came; I would have been mortified to have my mother tell another soul. Even though my home was predominantly female, it felt dirty, secretive and shameful on a societal level. Fortunately we live in a different era where periods are openly acknowledged and discussed. While they still might feel a little scary or gross, my hope is that the shame and secrecy are less. Working as a Labor and Delivery nurse has certainly helped me feel more comfortable talking with my children about our amazing bodies in a positive way.

Is it strange that our culture doesn't have coming-of-age rituals to recognize or celebrate these transitions? Perhaps we ought. With Annika's special heart, I've given more thought to what a period really means. A period represents the continuation of life. Her body is showing us that it is thriving--healthy and strong and whole. For us, nothing is promised. Annika was just a girl when her heart first stopped. There were moments when we didn't know if she would ever make it to puberty. Now, thanks to her donor, she can join all of her girlfriends in conversations about cramps and pads and period undies.

It feels so...normal. There aren't many peers who can relate in a conversation about her tacro tremor or everolimus mouth sores. This time as her body changes, she can be welcomed by a sisterhood who acknowledges the discomfort and pain as healthy and productive. Periods may suck, but on some level they are also wonderful--only through them does new life come into this world.

But as is so often the case with transplant, the story becomes fiercely tangled. For Annika, childbirth is very complicated. Even if Annika could bear a child, should she? Would she pass on her TNNT2 gene variation, resulting in cardiac problems for her children? Would the strain of pregnancy and childbirth be too much for her transplanted heart? What about the risk of rejection? Given her lower auto-immune threshold, would her body reject a fetus as foreign? What about her transplant medications? Some are known to be extremely harmful in pregnancy. And even if Annika and her child both made it through childbirth safely, what then? The future is uncertain for all of us, but for Annie the grasp is tenuous. Before she was transplanted, her team was very clear that transplanted hearts for her age group last an average of 10 years. If Annika were to have a child, she would already be running on borrowed time. Is it ethical to have children knowing that you might not be around to raise them?

Most of the time I push aside these harsh thoughts by focusing on the miracle of Annika's current health. Writing this, however, brings me to tears. Annika used to tell us how she wanted twelve children. It breaks my heart to realize that she may never any, at least in this lifetime. 

That first tentative smear of blood, full of both promise and pain. The hope of life and tears of an empty womb. Annie's first period.

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.