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.