When Can't Means You Can

 Post written on December 24th about December 23rd.  While the 23rd was hard, Annika had a marvelous Christmas.  Thanks to all for your love!

***

Yesterday was a hard day.  It started off poorly when I was grumpy with one of the nurses because she came in at 3:00 am to fix Annika's pulse oximeter, leaving the door wide open so that it woke Annika up.  It was 5:15 am by the time Annie finally drifted off again.  I know the nurse was just doing her job, but sleep has been really challenging for Annie.  She'd only gotten three and a half hours of sleep the night before, so both she and I were so tired that we wanted to cry.  Grumpy is never a winning strategy for me however, because I feel guilty about my crankiness all day long.

I was also kind of grouchy because the room that they moved us into after getting out of the CICU was dirty and small with ugly green painted walls.  I know it shouldn't matter, but the space just felt so claustrophobic and the complete antithesis of what Christmas should feel like.

The truth is that these annoying trivialities were just masking the real source of my discontent.

I wanted to be home.  

I wanted to be home with my children--all my children, including our sweet Brooklyn,  I wanted to gather around our beautiful Christmas tree and drink Eggnog and sing carols and act out the Nativity.  I wanted to hang our stockings by the fireplace hearth, eat Trix, savor meat pie with far too much cranberry sauce, and fill stockings.  I wanted to leave cookies and milk for Santa.  I wanted to gather with family.  Jason's family, my family, all the family.  I wanted to open brightly-wrapped packages together until the family room turned into a kaleidoscope of paper and bows flying everywhere.

I was tired of disappointment.  We have tried to celebrate the holidays at the Stoker cabin for the last three Wheeler Christmases.  Now it's three times in a row that it hasn't worked out.  In 2020, Eli tested positive for Covid.  In 2022 Annika had her initial cardiac arrest.  2024 is happier as Annika has been blessed with a shared heart, but it's still hard to be in the hospital.  My heart feels torn as I want to be here helping Annie have the best Christmas possible while also wanting to be with Talia and Eli and Jason and the Wheelers and my parents as well.

Hospital restrictions won't allow us to gather.  At the moment, only two visitors at a time are allowed in the Cardiac Care Unit.  We were able to reserve a Conference Room for Christmas day, but only from 11:30-2:00, and they told us that we can only have six people there.  We are not allowed to leave the main hospital and gather in the outpatient building either.

It'd be easy to blame the hospital restrictions for my discontent, but the sorrow actually lies much deeper.  

I wanted Annika to be well.

Yesterday was a hard day because December 23rd marks two years since Annika's cardiac arrest.  Our lives changed forever on that day.   In an instant, we went from having a completely healthy child (or so we thought) to supporting a daughter with a failing heart.  While this transplant gives her a new lease on life, yesterday starkly illustrated how all of our lives will never be the same.

For 2 1/2 hours, we learned about her transplant medications, including some really difficult side effects.  In general, a low dose of steroids is anything less than 7.5 milligrams, whereas anything over 40 mg is considered to be a high dose.  Did you know that while in the operating room, Annika received more than 1000 mg of steroids???  Among other side effects, steroids increase your risk of infection, raise blood pressure, increase your appetite, and cause insomnia.  Annika's also received four dose of rabbit thymoglobulin.  For this medication, rabbits are injected with human blood cells so that they produce antibodies against them.  These antibodies are then collected from the rabbit blood and given to transplant recipients to attack and wipe out the recipient's T-cells (the white blood cells that help fight infection and disease.)  While usually only given at the beginning, the effects of this rabbit thymoglobulin stay in your system for at least six months.

While it's super cool that Annika is now part rabbit, it's terrifying to realize how immunocompromised she is.  Her immune system has been suppressed to the point where it shouldn't recognize the existence of an entirely foreign organ.  That's crazy!  But it also makes me crazy nervous.  Annika has a village who LOVES her.  Everyone wants to visit and hug and let her know how much they care.  She wants to hug and love them back!  It breaks my heart that for the moment, this isn't safe.  After some months, the transplant team will back off on some of the drugs and Annika will be less immunosuppressed, but until then our life will look much like it did during the height of the pandemic.  No in-person school, no church, no extra-curricular activities, plus a ton of masking and hand sanitizer.

Her long-term medications have some difficult side effects too.  The tacrolimus is notoriously difficult on your kidneys, so Annika is supposed to drink lots of water to help flush it out.  The tacro has already given her a hand tremor.   I hope that this side effect will go away as her dosage decreases, but the truth is that we really don't know.

For Annika, education was hard because it felt like an extended list of CAN'Ts.  She was super sad to discover that she can't eat grapefruit or pomelos or pomegranates anymore.   Several months ago, we'd talked about what a post-transplant diet would look like: no raw fish, no undercooked meats, no deli meat, no soft cheeses, no buffets, etc.  However, we unintentionally skipped grapefruit and she took it hard, reminding us how the grapefruit from Aunt Christy's backyard is the best fruit she's ever eaten.  Who knew that learning SunnyD has grapefruit juice in it could cause tears?  But it did.  We don't even drink SunnyD.  I think it's just the idea of a life-long restriction that's discouraging.  Other rules: no swimming for a year.  No swimming in hot tubs or hot springs indefinitely.  No traveling farther than a two hour drive for six months.  After six months or so, the radius is extended to four hours until you hit the year mark.  And of course, the animal restrictions are hardest on Annika: a permanent ban on owning reptiles, amphibians, and birds.  

All of the prohibitions definitely contributed to the depressed vibe I was feeling.  After our lengthy education session, I took Annika to an empty common area with a big table so that we could work on a puzzle together.  While we were doing our puzzle, this little girl around the age of six walked up and gave Annika a fifty dollar bill, wishing her a Merry Christmas.  This unexpected act of kindness touched my aching heart.  I choked up so completely that I could barely whisper Merry Christmas back.  Tears flowed as I contemplated the generosity of a stranger.

In this moment, I felt so seen.  I felt how God understood that even though we are so very grateful for the remarkable gift of Annika's heart, it's still really hard.  There are moments when we wish we could go back--back to a carefree life free of medications and restrictions and cath labs and rejection and infection and CAV and PTLD and all the other cardiac concerns.  We have experienced so many miracles and are grateful for every one.  Still, there are moments when we mourn the miracle we wanted most of all--for Annika to be healed completely.  I recognize that her journey will transform her in remarkable ways.  She is already stronger, wiser, and more compassionate.  In the days since transplant, Annika's heart has been so tender.  She has been thoughtful, kind, snuggly, and polite, almost to an unusual degree.  I have no doubt that this transplant has left Annika feeling closer to God and the Spirit.  Whosever heart she shares, it is a remarkably special heart indeed.

Late in the evening of the 23rd, Annika and I went for a stroll to walk off a bit of our sadness and worry.

The long first floor hallway was completely empty, and I encouraged Annika to walk all the way to the dinosaur mosaic at the end.  At first she whined a bit that it was so far.  However, about halfway through the corridor, she started to walk faster and faster, finally breaking out into a jog as I struggled to keep up with Steven (her IV pole.)  As we reached the end, she broke out into this ENORMOUS smile and said, Mom, my chest doesn't even hurt!  Then she turned around and jogged the entire way back.  By the time we reached the elevators she was a little out of breath, but giggling with joy.  It's funny, but I haven't seen Annika out of breath in years.  Her chest has always hurt so much that she's had to stop before shortness of breath could happen.  Listening to Annika's glee as she told her nurse how she ran filled my soul with light.  

This moment showed me the Why.  Yes, transplant has it's can'ts, but Annika's life is now filled with so many cans.  Thanks to her new heart, she can hike mountains.  She can backpack with our family, and play tag at recess.  She can ride a bike and chase lizards.  She can ice skate and sled and ski and play pickleball.  Because of her shared heart, she can run.

Just as George Bailey journeyed from deep depression to unbridled joy over the course of a few hours, I too can proclaim, "Merry Christmas!"  It's a wonderful life.

(No Longer) The Sickest Kid in the Cardiac ICU

  A couple days ago Jason overheard one of the doctors giving report to another physician.  As he talked about Annika, he said, "She's probably the sickest kid we have in the CICU right now."  I know Annika likes to be a trendsetter, but this isn't the contest you want to win.

Today, several therapists asked when she is graduating to the regular cardiac floor.  We don't have an answer, but the way things are going, it feels like it could be really soon.

While I'd never wish to repeat the past few days, sinking so low has made the joy of healing indescribably sweet.  For days, Annika didn't feel well enough to peek inside a gift bag.  Heck, she didn't even want to snuggle a stuffed animal.  Without a stuffy, Annie hardly seems like herself.  Yesterday Annika was so depressed that she hardly spoke all day.  When asked a question, she would morosely nod or shake her head in response.  She just looked so sad.  An Annika who doesn't talk, an Annika who doesn't smile, an Annika without any sass--well, that just doesn't feel like our Annika at all.

With the dawning of a new day, Annika turned a delightful leaf this morning.  She is smiling, chatting, playing, teasing--it feels like we have our little girl back again!  And oh, what a beautiful day!

***

Favorite moments:

While depressed for the most of the day, Annika did have three genuine smiles yesterday.  Two were reserved for Talia and Eli.  She was so happy to have her siblings come visit.  She's missed them so much!  The third smile came when Uncle Lance provided music therapy.  She giggled at his song and insisted that Austin sing along as well.

Speaking of therapy, Annika had pet therapy come twice today.  These furry visits make her so happy!  She was equally delighted to have a visit from integrative medicine.  You could see her whole body relax during her fifteen minute massage.  In fact, she fell sound asleep and got a much needed nap afterward.  The very best, however, is music therapy.  I've mentioned that all of the hospital trauma I've experienced has made me kind of numb to most emotion.  It's like I've expanded the emotional scale to such extremes that normal fluctuations just don't hit me the same way that they used to.  Listening to the beautiful chords on the guitar as our therapist sang directly to our little girl--it opened channels of tears that have been welling for weeks.  I don't have words to describe the spirit I felt in that moment as she sang to Annika in her lowest moment.  You could see Annika's little body release the tension and feel peace.  Weak as she was, Annika thanked her for learning "I'm Not That Girl" just for her.  As the therapist went on to sing "Dos Oruguitas" from Encanto, I felt like heaven was speaking directly to us: "Viene Milagros"--miracles are coming.

***
Crepes!  During her depressed day yesterday, Annika told Jason that the only thing she felt like eating was crepes.  She wasn't being obnoxious--she had a craving, and nothing else sounded good.  We live close enough that Jason could have driven home to make some, but it would have taken a big chunk of time, and the crepes would have been cold by the time they arrived back at the hospital.  After a little reflection, I realized that the Ronald McDonald room upstairs had everything we would need: flour, eggs, milk, and butter.  Jason and I headed over to their fully stocked kitchen, and in no time had  savory and sweet crepes ready to go, complete with fried eggs and cheese or nutella, strawberries, and whipped cream.  I feel so grateful to the Ronald McDonald room for making this indulgence possible for Annika! 

Truly, the Ronald McDonald rooms have helped us in so many ways.  Their family friendly spaces have given us a great place to gather and relax with Talia and Eli when they come to the hospital.  We've been grateful for the quiet room when we've wanted to huddle as a family to pray and give blessings.  Twice our social worker has requested a room for us to stay the night in the hospital close to Annika--once on the night of her transplant and again the night after they reopened her bedside.  On both occasions, Jason and I were grateful to be able to sleep so close by.  We are likewise grateful for the access to a washer and dryer so that we can wash Annika's blankets and stuffed animals every day, keeping them clean and safe for the ICU.  Most of all, it has been such a blessing to have meals available here, saving money, time, and above all, stress.

***

Annika went for a walk today!  They were able to discontinue her nitric oxide and high flow nasal cannula, so she got out of bed and walked around the unit with just her IV pole and an oxygen tank.  This girl is so strong!  We were amazed by her speed and grit as she made her way to the full-length windows to peer out at the mountains.  While the foothills were beautiful, she rightfully commented that we need some more snow before Christmas.

Other notable progress: they removed Annika's NG (nasogastric) tube and the two wires sticking out of her chest that were used to pace her heart.  They removed her arterial line (mostly because it got clogged), and she is currently running only three IV medications (at times she has had 12 going all at once.)  They discontinued her NIRS monitoring, and her foley catheter is likewise out.  Tomorrow they plan to remover her IJ (interjugular) central line, and they might be able to remove her chest tube as well if the bleeding is controlled.  (Annika is currently being anti-coagulated because some clots formed in her left shoulder near the spot where they removed her ICD.)  She has a nasal cannula, but it's only providing 1L of oxygen/min, and that's mostly to provide extra support for our heart.   In other words, she looks so much more like the little girl we know!

***

If you talked to Annika today, she likely would have told you about the poop fest she had last night.  After massive doses of both senna and Miralax, she set what might be an all-time record on the unit for the amount of poop.  Uncle Justin is so very proud.  Jason and our unflappable night nurse spent much of the night dealing with Annika's repeated Code Browns.  I'll be honest--I'm kind of glad I missed all the fun.  But gosh, Annika sure felt better after!  Lest you think I missed out on all the fun, Annika did have a massive vomit episode during my day shift.  Let me tell you, cleaning off an ICU child and their thousand lines and tubes and dressings is a LOT of work.  I'm just glad her tummy settled down and we didn't have to do that all day long.

Other than that, today has been a joy.  We've read books, listened to our favorite songs, eaten chocolate, done crafts, given each other back rubs, painted toenails, and basically just enjoyed each other's company.  Annika has been so kind and polite to all of her caregivers--there are so many who are rooting for her!  Each time I go up to the third floor to fetch her a slushie, I run into nurses and techs who ask how Annie is doing and tell me how much they are looking forward to having her there again.  It makes me teary to realize how many people are cheering her along!  It makes me think of how I prayed on the night of her transplant that she would be in the company of angels.  I honestly feel like many of those angels are right here, right now.  I have met so many nurses who commute long distances (Spanish Fork, Orem, Kaysville), just so they can care for these remarkable kids. There may be nursing jobs all over, but there is truly no other place like Primary Children's.

A Thousand Words

 The last post was kind of heavy, so I thought I would share this instead, taken this afternoon.  

They say a picture is worth a thousand words.  While there is still plenty of road to travel, our girl is feeling SO much better.  We are extremely grateful for the skilled and compassionate care of her nurses and her medical team.  Many of the nurses remember her and cared for her two years ago.  She's done so much beautiful living since then!  Now we're looking forward to healing and living life fully outside these hospital walls once more.

Fasting for the Long View

 10:00 am Monday

I'm sad right now.  Sad and scared.  Yesterday morning all the doctors were raving about what a rockstar Annika has been with surgery and recovery, but today she looks worse.  She is hypertensive so they've had to add a bunch of meds to control her blood pressure.  Her CVP (Central Venous Pressure) jumped from 2 post surgery to 9 yesterday to 17 at the moment.  Her kidney labs (BUN and creatinine) have jumped, and she's stopped diuresing.  There hasn't been any urine output since I got here.  She has opacities in her lower lungs due to atelectasis.  Her skin feels hot and clammy, and you can see her poor chest heaving with every beat.  There is so much jugular venous distension.  Yesterday she ate a little food--today she doesn't even want a drink of water. Unlike yesterday when she was chatty and a little sassy, today she is lethargic, barely opening her eyes.  Today she's basically only woken up long enough to say, "I feel sick."  

If I've learned anything over the years, it's to take Annika at her words.  When it comes to how she feels, she doesn't overdramatize.  If she says that she feels sick, then she is sick.  I'm praying we can figure it out soon.  

Mostly though, I feel terrible guilt for putting her through all this.  There is such remorse for making her suffer.  The truth is that although she gave token consent, the decision was ultimately ours.  We took this hyper, happy kid, pumped her full of toxic meds, and now everything is struggling: her heart, her lungs, her kidneys.  What if we made the wrong choice?  What if her body can't accept this new heart?  The fear is paralyzing because no matter what, there is no going back. 

Today I am fasting for my daughter.  I am fasting for the patience and faith to take the long view.  I am praying for faith to see her playing tag with friends and pickleball with the family.  I am praying for the doctors and nurses so they can practice at their very best as they help her heal.  May they be blessed with inspiration beyond their own.  And may Annie's shared heart be blessed to heal with time, just as I pray for the hearts of her donor family to be healed with time.  Just as Annie's life will never be the same, I know their lives will never be the same.  Annie misses "Fred and George" (her name for her ICD/heart combo); I can't imagine how big the hole in their hearts is from the loss of their loved one.  Even as we all grieve a bit, may we find comfort and peace from on high.  I wish they could have seen Annika's echocardiogram today.  I teared up watching their shared heart beat steadily on.  This beautiful gift continues to give life.  I may be sad, I may be scared, but I am grateful.

7:30 pm Monday

Annika is still so sick.  Watching her chest heave, listening to her dry heave, feeling her pulses bound, seeing her flushed face and swollen fingers--it's all so hard.  For the most part she's hardly spoken all day.  This evening, however, she opened her eyes and said, "Mom, I just want to go home."  My eyes filled with tears.  Me too, baby girl, me too.

As sick as she is, there are still a few signs of spunk.  After she said she wanted to go home, she followed it up with a weak, "Come on Mom, let's go go go!"  Earlier today the nurse wanted her to rate her pain on a scale and she just didn't feel like speaking.  The sweet nurse said, "Come on Annika, you have to say something."  Annika stared her straight in the eyes and finally whispered, "Wolf."  The nurse laughed and said, "I'll take it."

8:30 am Tuesday

Another rough night.  It's hard--we checked into the hospital with a kid who had a sick heart.  Now her kidneys are broken, her entire left lung is filled with fluid, her blood pressures are uncontrolled, and she's super constipated.  Last night she was so uncomfortable--whimpering and crying from severe back pain.  She's grunting with every breath--they call it auto-peeping.  When our lungs are struggling, sometimes we grunt without realizing it to help the air sacks of our lungs inflate and stay inflated.

9:30 am Wednesday

Wow.  I feel like we've been hit by a Mac truck.  Acute kidney injury, pneumothorax, pleural effusion, septic work-up, hyponatremia--this feels like an overly complicated exercise from nursing school.  I never thought we'd have to add MTP (Massive Transfusion Protocol) and an emergency bedside sternotomy to the list.

An hour after I updated this post yesterday, her nurse went to check her chest tube and discovered deep red drainage.  The chest tube output had already been picking up--there had been 60 mL and 40 mL of drainage over the previous couple hours.  This time, however, the drainage kept coming and coming.  300 mL, 400 mL--by the time the team arrived, she'd already drained 600 mL over a matter of minutes and it was still coming.  You can tell how serious a medical emergency is around here by the number of people that arrive.  The cardiothoracic surgeon was called--he was ten minutes away.  The IV team came, emergency blood was ordered, followed by activating the Massive Transfusion Protocol.  They called nurses, techs, X-ray, and even a social worker for Jason and myself.  Annika was intubated at the bedside and we thought she would be rolled into the OR.  Instead, her room was transformed into an operating room.  They placed another IV in her foot and started pushing blood as quickly as they could.  As tears poured down my cheeks and I fought back sobs, Jason stood by Annika's side and told her how much he loved her.  The social worker asked me if there was anything I wanted to say to Annie before they gave her fentanyl, but I was too choked up to do more than whisper.

I can't describe what it's like to say your final good-byes to your child as a team of medical professionals frantically scurry around to get everything set up.  I can't describe what it's like to stand outside the room and watch as a surgeon opens your child's chest.  Mercifully, I am short and didn't see much over the mass of bodies.  What I saw was enough.  Jason saw it all--surgeon's hands inside our daughter all the way up to the wrists.  

What I can say is that I hope this is something you never have to experience.  The pain is excruciating.  I excused myself to the bathroom for a moment so that I could let out the ugly sobs in private.

Tethered to the pain, however, was still gratitude.  Immense gratitude for ALL the people who were there (30?  40?  I wish I had counted), each of them there for only one purpose--to save our child.  And save her they did.

While open heart surgery in your child's hospital room is indeed dramatic, the situation was not quite as dire as I make it sound.  Although Annika did lose a substantial amount of blood, her blood pressure never dropped to a dangerous level.  Her vital signs remained stable.  While there was a lot of blood pooled, they never found an active bleed after opening her up.  We don't quite know what happened or why, but they were able to send the MTP team back.  Before the surgery, the surgeon came to talk to us and ask us to sign consents.  He said, I know this feels like a lot, but it's not a crisis.  Always sassy, I told him that it felt pretty close.  And it did.  

But I know what an actual crisis is.  We've been there.  And thankfully this was not it.

Even though reintubation and a bedside sternotomy was not part of our plan, Annika has actually been doing much better since.  Whether due to the blood products received or getting that liter of fluid out of her chest, Annika's kidneys suddenly kicked back into action.  Hallelujah!  She started peeing a ton.  I never imagined that I would feel so excited by the sight of a giant bag full of urine.  

Her poor body has been so swollen, but she's started to lose that fluid too.  Her unrecognizably puffy fingers now look like her own hands, and her swollen cheeks have gone back to normal.  Her ankles had gotten so swollen that her ID band was tight, but it's loose once more.  Her blood pressures have been better with less medication needed to control it.  Her chest x-ray also looks better, and her electrolyte levels are back in range.  Last night she spiked a fever so they are being very careful about infection, but even the fever had broken by 11pm.

Even though in some ways Annika looks more sick--she now has an NG tube and even more IVs, she also looks better.  We may be headed into post-op recovery round 2, but we are hopeful for smoother waters.

Annie's Shared Heart

 On Thursday night, I received an unexpected call from UCHAMP (the cardiology team) at 7:30 pm.  As soon as I saw the Caller ID, I knew what they would say: the team had accepted an offer on a heart for Annika.  

Eventually I might put together a play-by-play from the time we received "the call" through the time of her transplant on Saturday.  In the meantime, I'd like to share some tender moments.  Transplant is an experience so intimate that in a way it feels sacred.  I want to honor it with more than mundane details.

***

Peace.  In many ways, I am an anxious soul.  I tend to be constantly on the move because my mind races and the physical movement calms my jitters.  You'll often find me compulsively straightening my physical space because I can't focus with clutter around me.  The kids will send me out for a walk or run when I get too stir crazy.  As you might imagine, all of the worry about Annika's heart has heightened my anxiety over the past couple years.  It's not out of control, but it's nearly always there as an undercurrent making my heart buzz a little faster in the hopes that hers won't stop.

When the news of Annika's heart arrived, I expected to be a nervous, jittery wreck.  Instead, I felt this overwhelming peace and calm.  While I shed a few tears, I didn't feel sad.  Instead, I felt hopeful.  Even during the eight hours of transplant surgery, the calm remained.  I thought I would spend the hours of transplant nervously pacing every hallway of the hospital like a madwoman.  Instead, I found a chair, curled up with my pillow and blanket, and was still.  I pondered, I meditated, I prayed, I slept.  I experienced the lyrics of the hymn: Peace like a River, it is well with my soul.

This peace--a peace surpassing all logic, a peace so unlike my typical worrying self--this peace enveloped me in what should have been my hardest moment.  I know this peace was a gift from God.  A know it was His reassurance that no matter the outcome, everything would be and was already all right.  Before Annika's surgery, I offered a special family prayer where I felt strongly impressed to tell her that she would be protected and watched over by angels.  I believe angels were watching over me too.

Pain.  Not every moment leading up to the surgery was peaceful.  Just a day before the transplant call came, I experienced something horrific at work.  I can't say much because of HIPAA,  but this was the kind of experience that many Labor and Delivery nurses never encounter during their entire careers, let alone ten weeks into orientation.  We nearly lost a mother. Fortunately our response was timely and appropriate and the patient will likely recover.

The culprit?  Cardiomyopathy.  As terrifying as this experience was, I don't believe it's a coincidence that it happened to me in particular at this particular time.  I could condemn God as cruel for exposing me to all this when He knew it would hit so close to home.  Instead, I am choosing to be grateful that I was able to help save this mother and am thankful for the reminder that cardiomyopathy is not to be trifled with.  While a dreadful experience, it helped reaffirm our decision to proceed with transplant.

Place.  I don't believe that God micro-manages our lives like chess pieces on a board, but I do believe He occasionally orchestrates us to be in the right place at the right time.  During the transplant, Jason left the hospital to go pick up Cafe Rio for lunch.  On his way back, he pulled behind an ambulance traveling without its lights on.  Suddenly, a fire chief scooted around Jason and pulled back in between him and the ambulance.  Obviously the ambulance was being escorted.  Jason watched as the ambulance pulled into the ED at Primary Children's.  As Jason recounted the story, we both felt strongly that this vehicle was carrying our daughter's new heart.  We'd recently received an update that she was in the operating room with her chest open and waiting.  After the surgery, the surgeon confirmed that indeed, this was precisely the time when the heart arrived.  It had been flown in via jet and then transported the rest of the way via ambulance.  What are the chances?  As Brian Blackham would say, 100%.  While a small thing, this tender mercy felt like God letting us know that He is near and very aware.

***

I'm still trying to wrap my mind around the fact that the heart beating in my daughter's chest today was beating in another's yesterday.  Coming up with a title for this post was tricky: I almost said "Annie's New Heart" but whose heart is it really?  We don't know anything about the donor, but we do know that this heart has been with them for years.  It's hard to resolve the cognitive and emotional dissonance.  How is transplant even possible?  I feel simultaneously awed and numb.  I am overwhelmed that any person or any family could and would give so completely of themselves.  My own heart is struggling to contain all the hope for Annika alongside all the sorrow for her donor and their family.   It's like my body and mind have experienced so much emotion that I don't even know how to feel anymore.  Mostly though, I feel gratitude.  I am grateful for the donor and their family.  I feel grateful for the army of surgeons and nurses and doctors and therapists that allow transplant to happen.  I feel ever so grateful that Annika's surgery went smoothly and she is doing so well.  And I am grateful for this beautiful shared heart.

Tender Hearted

 My heart is pretty tender right now.  Annika and I just attended sacrament meeting on the third floor of Primary Children's.  The meeting wasn't long--less than half an hour--but the spirit was so strong in that little auditorium that the tears flowed.  Annika wanted to sit in the front row, but we moved back because there were so many kids who needed the front row seating, whether because they were in wheelchairs or because they were trailing giant IV poles with multiple lines.  Far from being silent, the sacrament prayers were peppered by the beeping of IV pumps.  Two adorable toddlers with VADs (Ventricular Assist Devices) were there, their cardiac pumps trailing behind them on wheeled carts the size of a rolling suitcase.  These kids are so small that you can see their external Berlin hearts dangling past their knees, kind of like in this picture I found online.  Annika's wait for a heart will be much shorter than the wait for these toddlers, mostly because she is tall enough to accept the heart of a small adult.  Toddler hearts don't become available very often, which is mostly a good thing, but it also means that these sick kids wait in the hospital for many months, sometimes even years.

It's funny, but I never expected to be admitted to the hospital for a heart transplant and feel overwhelmed by how fortunate our circumstances.  Whether talking about the proximity of home, Annika's relative health, or Annika's size, we feel extraordinarily blessed.  It's been special to form some connections with families going through similar challenges.  A few days ago Annika met a beautiful Mom who was listening as Talia and I were playing piano.  The Mom asked Annika about the journey that brought her to Primary Children's, and we learned that their newborn son was likewise waiting for a heart.  Yesterday we found out that a donor heart had become available, and the transplant was successful.  When Annika saw this Mom in church today, she ran up to her and gave her the biggest hug.  It was so sweet to witness their special connection and the shared joy.  

There is a lovely meditation room just outside of the cardiac unit featuring a wall of fairy lights and tiny clothespins.  They have little slips of paper for you to pin your hopes and wishes on the wall.  After spending some time meditating and praying in that room, I simply jotted down "The right heart at the right time."   As I pinned it to the wall, I realized that my prayer wasn't just for Annika--it's for every cardiac child waiting anywhere.  

Going back to hospital church, as I sat in that sacred space, I was overwhelmed with this feeling of how much God loves these children.  We are all precious to him, but I believe he he has a special, tender place reserved for these kids who are going through so much.  Tribulation softens hearts, and these tender hearts have been molded to draw close to Him.

Hospital Life

 Here's an update that I started on Friday.  I'll get a more current one later, but the general theme is the same.  Despite a couple of nasty migraines, we are doing well and just hanging out waiting for a heart.

***

Well, it's been 90 hours since we checked into the hospital, but who's counting?  I feel a little stir crazy, and I've been able to spend time outside every day, including working two 12 hour-shifts at a different hospital and sleeping at home twice.  I can only imagine how Annika must feel.  Primary Children's is doing an amazing job making it feel as fun as possible, but it's still hard.  She wishes she could go home.  Me too, girl, me too.

In the meantime, here's a photo journey of some of the better parts

Checking in.  While most of her stuffies had to stay at home, she brought both of her dragons to keep her company. 

She handled her initial blood draw like a champ.  In fact, she did so well with them that she opted for a daily poke instead of getting IV access where the tube has to stay in all the time.

One of her first priorities was to make a how-to video for drawing a tiger.  She had me record it so she can start a Youtube channel.  I'll let you know if we get it edited and published so you can check it out.

Jason took this picture as he came up after work.

Talia joined as well after her orchestra concert.

We headed upstairs to play some Christmas carols.  I love that they have a piano available!  Yesterday I brought Annika's piano books up and she even practiced a bit.

Playing along with her imaginary violin.

Goofing off as we say goodbye.

Here's Annika sending a transmission from her CardioMems the next day.  Shortly before Thanksgiving they inserted this tiny sensor (the size of a paperclip) that lives in her pulmonary artery.  When she lies on this giant "pillow," she can send a remote transmissions of the pressure readings, kind of like a tire gauge.

All done!

Hanging with Eli.

As for Talia, our tired Senior chose to take a nap on the floor.  (This room was pretty small, so places to stretch out were limited.)

Bedtime.  We told the cardiology team that quality sleep was a high priority for us, so they are letting Annika skip her 4am vitals, plus phlebotomy is supposed to do blood draws after she wakes up.  (I had to gently remind them of this when they came in at 5:30 this morning.)

In general, Annika's liked the hospital food okay.  Each morning she orders an omelet with spinach, onion, mushrooms, cheese, and bacon.  It smells amazing and she devours it all without sharing a bite.  For this lunch she got fettucini alfredo with shrimp.  I think she liked it, but not enough to order it again.  Personally, I just like listening to her call and give her menu preferences.  It was scary at first, but she's getting more comfortable picking up the phone and dialing.  #lifeskills

These first days were filled with a LOT of Minecraft.  So much that we may have had to go through a period of detox because she was becoming super dysregulated and wasn't able to switch gears when providers came into the room.  I may or may not have taken the X-Box controller home from the hospital and brought it home for three days until she earned it back.  It was a bold move, but I think it was a good choice.  The following days were so much more creative and positive.  Now she can have Minecraft for an hour a day again, but has to "earn" her play time by doing some other things first, like practicing 15 minutes of piano and going for a walk.

We didn't love our first room because it was so tiny, but we still did our best to decorate by putting up these amazing garlands that NomiAnn made and sent.

Hunting for the Elf on the Shelf.  That Elf's been up to mischief for sure!

Out for a hospital stroll with Mom.

Someone made these adorable crocheted plushies.  Annika adopted a snowman to give to Violet for her third birthday.

Nose to nose with a gnome in the gift shop.

Enjoying the cute little plush snowflake given to her by her friends Ilse and Ehrhardt.

Upgrade!  Since Annika may be here for a while, they were able to move us into some larger accommodations.  Hooray!  It feels SO much roomier and accommodates guests much better.  Thanks to Callie for helping us transfer over.

Other fun moments--hanging with our new bishop, Eric Buell.  It's pretty awesome when your bishop happens to be a pediatric anesthesiologist.  

Pet therapy!  Annika was so excited to have Guiness come visit.  I was at work and didnt' see, but apparently Guiness is massive and great for cuddling.

Jason, Annika, and some of the care team made the most beautiful snowflakes!  I love how they make the room feel.

With Minecraft on hold, Annika got super creative and started making dozens of unique birds that each have their own name and personality.  Apparently the Firebirds battle the Waterwings, so I have to be careful to separate them when they get stored away.  For a long while they have taking over the couch (that's where the nest is), but I finally had to insist on getting my bed back.

Last but not least, mailing a letter to Santa.

Hope it makes it to the North Pole, even (or especially) from Primary Children's.

Listed

 At 3:00 pm yesterday Annika and I checked into Primary Children's Hospital.  While she was chipper, my heart felt heavy as we passed through the doors.  It's pretty weighty knowing that your child will walk in with one heart and leave with another.  By 6:00 pm we received notice that she had been officially listed on UNOS--the United Network of Organ Sharing.  Today we received a formal letter informing us that her Status 1A listing (highest priority) had been approved.  

But this post isn't about Annika.  This post is about her donor.  While we obviously have no idea who her donor will be, we are praying for them and their family.  As much as we want our child to be healthy and well, we don't wish for any family had to suffer the grief of pain and loss, especially during the holidays.  Even though it was two years ago, the biting ache of nearly losing Annika on Christmas still takes my breath away.  Jason and I have been listed as organ donors for years, but it hits differently when it is your own loved one.  As Annika coded on the table of the emergency department, my own heart ripped in two.  I wanted to hold on to every piece of her, all the way from her messy buns to her pink snow boots.  

While I believe that we would have chosen to donate Annika's organs if she had passed, I recognize that it would have been a tremendously painful decision.  I love my children entirely, wholely, fully.  Sharing someone you cherish with a complete stranger requires extraordinary love and generosity. 

So to Annie's future donor, please know that we see you.  We think about you.  We pray for you, and hope you are living life fully with gladness and joy.  We have been carrying you in our hearts ever since we learned that one day Annika would need a transplant.  May God bless you and protect you until it's time to come home.  We are happy to wait.  And when you cross that bridge to the other side, may you be wrapped in arms of eternal love for giving another the gift of life.

Words fall short, but our gratitude grows.  To every organ donor anywhere, but especially to ours--thank you.

Grateful for the Pillbox

 This is a weird time in our lives.  As I refilled Annika’s pillbox yesterday, I had this strange realization that this will be the last time we fill it for a while.  She is being readmitted to Primary Children’s on Monday afternoon, so the hospital will take it from there.  The next time we use our rainbow pillbox, it will be filled with transplant meds instead.

Ever since Annika had her cardiac arrest, the weekly ritual of refilling her meds has been a beautiful experience for me.  That first time I filled it, I remember feeling SO GRATEFUL for the past seven days we’d had together.  My eyes filled with tears as I pondered the gift of extra time with my daughter.  I acknowledged that this gift came only through grace of God.  Since then, instead of an unwanted chore, refilling the meds has become a joyful reflection on the beauty of life.

I still feel gratitude for the gift of time. When you think about it, this is one of the better scenarios if transplant had to happen.  We’ve had nearly two full years of relatively carefree health since Annika’s initial cardiac arrest.  It’s crazy how much we have squeezed in over these couple of years!  Our Make-a-Wish trip to Hawaii, waterskiing and fishing with cousins on Lake George, playing in the waves on Long Island, walking the Highline in Manhattan, Wheeler family reunions in Quebec and Torrey, a Wells family Christmas surprise in Omaha, Washington DC with the Vedeckis family, horse camp at Trefoil ranch, Hummel Day camp in Omaha, backpacking Ruth Lake, Memorial Day camping at Mesa Verde, kayaking with manatees and visiting Grandpa Wells in Florida, Disneyworld, Grandma Hansen’s 99^th birthday celebration in Rupert, hiking Goblin Valley, a Thanksgiving road trip to San Antonio, Arches, the St. Louis arch, a total solar eclipse in Missouri, Zion, Yosemite, Little Wild Horse canyon, building a quinzhee, skiing and so much more.

These past two years have been lived with abundance.  I feel grateful for every moment.

Instead of a slow decline and the anxiety of waiting for a heart from home, we will be able to move forward pretty swiftly.  Once she is admitted to the hospital, it is unlikely that Annika will wait very long: days to weeks, not months to years.  The next year of healing will certainly have its challenges, but beyond that horizon is an abundance of hope.  Running, hiking, skiing, backpacking, rappelling, even travel. Annika wants to go to the Amazon rainforest.  As for me, I’m excited to travel as an entire family to Spain to see the August 2026 solar eclipse and Brooklyn’s mission.  Two months ago, I doubted the feasibility, but now it seems like it just might work.

Here’s to more memories and an abundance of pillboxes in our future.

Ups and Downs

 I composed this a couple days ago but decided not to post it.  Good news is that Annika had better days on Sunday, Monday, and Tuesday so we are on our way to Omaha.  #feelingblessed

***

It's been a bumpy road.  

When we arrived at the Cardiac ICU two years ago and were placed on ECMO, I recall one of the doctors giving us some advice.  He warned us to prepare for a roller coaster ride full of ups and downs as we navigate Annika's health journey.  In truth, Annika's journey home two weeks later was largely uncomplicated.  From the low point of ECMO, things got progressively better.  I remember feeling quite lucky that we'd skipped the giant dips he referred to.  I felt grateful that ours was a kiddie coaster.

Reflecting back, I realize that I wasn't taking the long view of her journey.  I think we are riding Cannibal at Lagoon.  After a smooth elevator ride to the top (birth to age 9), there's that terrifying drop (her cardiac arrest.)  We made it through that experience and had a gentle pause, but there is still lots of coaster left.

Photo snagged from Lagoon's Facebook page

When Annika's doctors requested she come to the hospital for evaluation on Wednesday, both Jason and I felt ready to list her for transplant, even if this inpatient workup felt like a bit of overkill.  It had been a long process coming to this point of acceptance.  As soon as we mentally and emotionally arrived at this spot, the roller coaster took another wild turn.  Dr. Lal sat down with us to explain that the team highly recommended that Annika be listed as Status 1A.  Status 1A is reserved for the sickest heart failure patients who are waiting for an organ in-hospital.

We were shocked.  I hadn't foreseen this unexpected twist.  Annika seemed so healthy.  However, Dr. Lal explained how out of all his heart failure patients, he worries more about Annika's specific condition because her heart is so unpredictable.  Her heart stopped while roughhousing and tossing leaves with a friend.  She wasn't doing anything crazy, and her heart rate wasn't very high.  When this happened back in January, her dose of beta blocker was small.  In response, the doctors tripled the dosage to blunt her heart rate and manage the arrhythmias.  This time, however, she was already maxed out on meds.  They are running out of options to protect her heart.

Head spinning, I just wanted to break down and sob.  In envisioning heart transplant, I had this scenario in my mind where Annika would be living her best life and skiing up at Brighton when "the call" came.  The last time they talked with us about transplant time frames, they told us it could be a year or two.  Now they are talking about weeks.  It feels so fast.  Plus, this isn't how we anticipated spending the holidays.  The deja vu from two years ago is unsettling.

When Annika went to the cath lab later that day, the pressure values came back slightly better than anticipated.  We were able to negotiate for some time.  Annika could be discharged Saturday in time for her cousin Eila's birthday party and we could spend Thanksgiving together as a family.  The team would meet on Tuesday to discuss whether she needed to be listed 1A or if she would be okay waiting longer as a Status 1B patient.  I was thrilled.  We'd been planning to do Thanksgiving in Omaha, and I wanted nothing more than to escape town and feel normal for a while.

Coming home was lovely.  Our Christmas tree is beautifully decorated, and Annika immediately settled into her perch by the heater, pulling out colored pencils to draw.

Eila's Harry Potter party was also amazing.  The kids made potions, got divided into houses via M&M filled sorting hats, played Quidditch on the tramp, cast spells, painted wands, made brooms and more.  Yet it was also kind of sad.  Annika's chest hurt severely when she tried to battle the Whomping Pillow.  She looked soooo tired. She couldn't play Quidditch or keep up with any of the active things the other kids were doing.  Instead, she snuggled in an arm chair with Pickles in her lap and watched.

Pickles time is the best, but this was a huge change.  For the first time, Annie seemed like her heart was really sick instead of it being largely invisible.  That night we all went out to eat at Chile Tepin to celebrate being together.  It was delicious, but Annie's chest hurt significantly after walking a quarter block downhill to get back to the car.

Two days ago I wrote that we were toeing the line on our list of transplant criteria.  Now I would say we've definitely crossed that line, including "feels substantial social isolation from peers related to inability to participate in activities."

Like I said, it's been a roller coaster.  Yesterday morning I was excited to send Annie back to school on Monday and Tuesday to see her friends.  I was planning to continue my orientation at work.  Today I emailed Annie's teachers and my work to let them know we wouldn't be there after all.  While we haven't made a final decision, Omaha feels dicey.  It's far away, and Annika would have to take it soooo easy.  If she doesn't feel significantly better today, I think we may need to call the hospital and let them know that we are ready to come in sooner.  

These are sad days around here.  While we've been trying to initiate conversations with Annika about transplant for a long while, she's been in denial.  She never wants to talk about it and changes the subject as soon as possible, closing down with "I don't want a transplant."  This suddenly feels so real and so sudden.  She's overwhelmed and angry and sad and scared.  I would be too.  Imagine knowing you are going to miss Christmas.  Imagine missing out on your role as a rapping shark in the school play and Peter Breinholt's Christmas concert and the Christkindlmarkt and Christmas lights.  Imagine how scary it would be to face this kind of surgery.  Understandably, Annika doesn't want this, but I don't know if we have any better options.  I want her to have a voice and feel like she has ownership and autonomy in this decision.  After all, this is her body.  But frankly, it feels like her heart has decided for her.

If you are the praying kind, please pray that our little girl can feel peace.  I have felt some spiritual confirmation that this is the right course of action, but Annika deserves to feel that too.  

***

Update: prayers are being answered.  Annika is feeling much more peace and moments of joy, even with the understanding that transplant will happen.  We have much to be grateful for in this season of Thanksgiving.

Hard Answers to Prayer

  At times I wonder why I disclose so much of Annika's health journey in a public (albeit lightly trafficked) space.  Writing certainly helps me process.  The stories help us remember and weave these experiences into our family history.  The blog connects us with friends and family.  But I think it's even more than that.  In many ways, this journey has been a lonely one.  It's rare to meet someone who personally understands what it's like to have a seriously sick child.  A piece of me hopes that someday someone will find this blog, read Annika's story, and gather comfort from the shared experience.

Here in the hospital it's easier to find community.  Yesterday Jason and I dropped by a lunch gathering for parents with children in the CICU.  While I'm all about the free lunch, I think the real reason I wanted to go was to connect.  We were a small group, but as we went around the room introducing ourselves, three of the other families had undergone heart transplant, including a family whose daughter was transplanted at age 11.

While still a hard moment, it was comforting to feel like we are not walking this journey alone.

Late this summer, we noticed that Annika's chest pain was becoming more frequent and increasing in intensity,  Her cardiac health was starting to frustrate her.  She couldn't play tag with her friends, she stopped bouncing on the tramp, and walking home from school made her super cranky because it hurt.  She broke down after play practice one day because the choreography was too much.  After getting a scare from some lab work that was uncomfortably elevated, we decided that it was time to renew the conversations about heart transplant.  A year ago we created this list of indications for when it was time to list.  While we haven't met every parameter, we are definitely toeing the line.

This time Annika participated in the heart transplant evaluation with us.  These were some challenging conversations, but I felt peace that we were proceeding down the right path.  Then a couple of days ago I started to have major doubts.  Transplant is just so complicated and final.  I told Jason that if this was the right course of action, I really needed God to let met me know.  Then I backtracked and said that maybe I didn't want that because I knew what an answer might look like.

Less than 24 hours later Annika's heart stopped.  

While this was not the answer I wanted, I believe God heard.  Even with the wrenching ups and downs, God is keenly aware.  I've had strong impressions that our Heavenly Father knows each of these heart transplant kids and that he has a plan for them.  I recently read an article about a twelve year-old girl from Davis County who received a heart after six hours of being listed.  I don't believe that's just coincidence.

I don't expect (or even want) Annie to receive a heart immediately after being listed.  Heck, I don't want her to be listed at all.  As Annika put it, this is the worst "Would You Rather" scenario ever: a transplant or imminent risk of sudden death.  However, I am placing my trust in both God and her medical team, all of whom are communicating that she needs a new heart sooner than later.  I know our little girl has Heavenly Parents who cherish her and want the best for her.  But down here on earth, she has two parents who desperately love her too.  Praying for the faith to get through this.

Blippety Blip

 Well, here we are again.  Back at Primary Children's Hospital right around the holidays.  

At 4:55 pm yesterday, the blip blooped...again.  In other words, Annika's implanted cardiac defibrillator (ICD) delivered a life-saving shock.  Just like in January, she blipped after school, while I was picking her up from play practice.  She was rough housing with her friend James and having a leaf fight in front of Wasatch Elementary.  I remember watching and feeling simultaneously glad because she was running around like a "normal" kid and annoyed because she wasn't getting in the car like I'd asked.  When I got out of the car to fetch her, she stopped running and said that her chest hurt.  We paused for a moment for the pain to pass, then I told her we needed to get in the mini-van because I was blocking traffic,

Well, I guess I should have given her longer to recover, because when we got in the car she put her head between her knees.  (She remembers this.)  She stayed that way longer than I would have expected, so I started teasing her about being dramatic.  Her head was bobbing with her pony tail flopping down in front of her face.  I told her that if she had really passed out, she wouldn't mind if I tugged on her hair.

Annika shifted as soon as I touched her head and said, "What happened?"  I thought she was joking,  Having just come from theater class, I figured she was acting.  Besides, the timing of her response was flawless.  Her imagination is so vivid that sometimes it can be challenging to discern fiction from reality.  However, when she repeated her question the second time, she sounded really upset.  She promised me that she hadn't been pretending, and that she thought she had passed out.  When she told me that she'd peed her pants, I knew something wasn't right.  To quote Annie, "would I do that if I were pretending?"  As I helped her out of the car, I noticed that even though her heart beat felt normal, her skin was surprisingly clammy.  Something big had happened.

I immediately smothered my little girl in a hug and let her know that of course I believed her.  I still feel so guilty for not recognizing the truth in her story immediately.  The incident was just so unexpected and happened so fast!   The time that she was slumped over was brief--less than thirty seconds.  I still can't believe she was sitting right next to me and I didn't recognize the arrest.  Annika complains of chest pain multiple times every day--I didn't expect this time to be any different.  I didn't notice any kind of shock or hear any beep from her ICD.  Even as I sent a remote transmission from her ICD, I felt unsure about what had happened.

The great thing about a transmission is that it can tell you exactly what happened.  When they showed us her report the next day, it clearly showed her normal sinus rhythm (this is what you want) devolving into ventricular tachycardia, followed by ventricular fibrillation at a rate or 330 dysfunctional "beats" per minute.  You can see where the ICD delivered a shock, and then the return of normal cardiac function.  Per the device, the entire incident lasted fifteen seconds.

Fortunately, Annika recovered quickly.  I called the cardiology clinic while she hopped in the shower to clean up.  By the time she was out of the shower, she wanted to go to 5:30 Activity Days at the church.  As she skipped away from the car and up the church stairs, I reminded her, "Don't run!"  Then I went home to start dinner.

Well, it turns out that the cardiology team was more concerned about the blip than I was.  Shortly after arriving home, I received a return phone call requesting that we bring her into the emergency department so that she could be evaluated.  They warned me that she would likely be admitted.  A little stunned, I asked if I could wait to bring her into the hospital until after we'd eaten dinner.  I didn't want to fess up that she was already off doing her own thing.  An hour would give us enough time to finish Activity Days, grab a quick bite to eat, pack a bag, and still make it up to Primary Children's.

When we got the Emergency Department, they were expecting us.  They showed us back to a room and started an IV.  In return for her cooperation, Annika was richly rewarded with slushies and slime.  She definitely understands how this hospital gig works.  She knew to ask for the "Buzzy Bee" to help with IV placement, and requested specific colors for her slime and the accompanying glitter.  

Plus, she brought Toothless to keep her company.  She was telling all the nurses how it was from her cousins in New York and showing them how it plays a special message.

Late that night Annika was admitted to the Cardiac ICU out of an abundance of caution.  Here's Annie getting an echocardiogram in the morning.

  

The best part of her day happened when they decided to let her eat food because she wouldn't be going to the cath lab yet.  To celebrate, she devoured a crazy amount of omelet and pancakes.

You don't typically think of the ICU as being an enjoyable experience, but between the Minecraft, Legos, and library, I'm quite certain Annika enjoyed it.  As a parent, it was a little less fun.  While the care is exceptional, it's really difficult to sleep with all the bright lights and constant activity.   Plus, the unit definitely has some triggering memories for me.  I recognize it as a place of miracles, but felt very grateful when they were able to transfer us upstairs to the regular cardiac floor this evening.  We were double bunked in the ICU, so her new private room feels like a spacious luxury.

Fun as its been, I'm hopeful we won't have to stay too long.  After all, there's no place like home.