Second Christmas--January 7th

 For Annika, Christmas finally came!  She made it home from the hospital about 5:00 pm on Friday, January 6th.  Saturday January 7th was Christmas.  I'll let the photos tell most of the joyful story.

Here's our girl breaking free from the hospital.  It was a good thing Jason had his Dad's truck, because over the two weeks we accumulated a lot of stuff!  (Mostly in the form of amazing stuffies.)

While we loved each of our care providers, I generally tried not to get photograph them in order to respect their privacy.  Still, I wanted to tell you the story of Liv, our last nurse.  After greeting Annika, Liv helped her create goals for the day--four times out of bed and four drinks.  Then she got down to Annika's eye level and explained that she has the same thing as Annika: HCM or hypertrophic cardiomyopathy. She adjusted her scrubs and showed Annika the spot where she also has an ICD, placed about a year ago.  This tender moment felt like a beautiful conclusion showing the glowing possibilities of life with a heart condition.

Annika rode with Brooklyn and NomiAnn while Jason and I toted all the stuff in his father's truck.

Welcome home!  Annika was greeted by colorful signs made by Anders and Eila.

Siblings!

Talia made Annika an amazing sign as well.

Time for smoothies and games!  Annika was glad to get home where we could thicken her smoothies with banana instead of the hospital thickener she dislikes so much.  

Salmon for Chistmas Eve dinner.  Yum!

All tuckered out.  Time to head upstairs and dream of Santa.

Home, sweet home!

Chistmas in January!  Waiting to come down the stairs.

Pictures in front of the hearth.

While in the hospital, Annika and I made a list of all the traditions that needed to be honored for our Second Christmas.  Meat pie made the list! Appropriately, it donned the sign of the Deathly Hollows.

All ready to open packages!  Only thing missing...

...cousins!  We were so glad that Anders, Eila, Callie, Adam, NomiAnn and Papa Kay could join the celebration.

Pausing to play a few carols.  This might be my VERY favorite part of Christmas.

At last!  Time to open gifts.  Eila did a great job distributing.

Annie loves the sweater from her Uncle Lance and personalized hat from NomiAnn and Papa Kay.

Turns out clothes are a popular choice all around!

We were all amused by the collection of Sriracha gear given to my spicy husband from multiple sources.  When you're hot, you're hot!.  Best of all, he just happened to be wearing his Sriracha shirt already.

The Crunch Cup--perfect for Brooklyn as she gets ready for college.  Fun music earrings too.

Everybody loves Zoe.

We now have Alotalotls.

The grown-ups soak in all the joy.  Christmas this year felt so very precious.

I'm not sure you can ever have too many stuffed animals, but if you can, this gal pushes the limit.  She loves each one so much!  They all have a different name and personality.

This stuffie is extra special, having been sewn by some young friends in the neighborhood.

My favorite gifts of the day were these pine cone ornaments that Callie made out of paper, whether music or children's books.  This one for Annika is especially tender, having been made from Primary Children's literature and a band-aid.

Annika hand made some presents too, including these little books for Eila and a gorilla family for Anders.

Her horse Icy actually received the most Annika presents as she dressed her in pink felt.

More Christmas happiness. 

Time together has always been precious, but we feel it more deeply now.  For months we've been emotionally preparing for Brooklyn to run off to college.  Just glad Annika didn't escape off to heaven first!

Last but not least, Christmas dinner, complete with turkey, stuffing, sweet potatoes, cranberries, and all the fixings!  Due to a failed swallow study, Annika got to enjoy her meal with a smoothie instead of water.  Otherwise, it was holiday tastiness as usual.

Merry Second Christmas everyone, and a Happy New Year!

Did I Miss Christmas?

Dec. 28th was an important day for Annika.  One day removed from ECMO, she was ready to get her breathing tube out.  

They leave the breathing tube in post-ECMO to act as extra support for the heart while it gets used to functioning on its own again.  Still, Annika really disliked it, so it was getting harder and harder to distract her from yanking on it.  As you can tell from the video, she was super excited to have it removed.  

The process of extubation isn't particularly fun, but Annika handled it like a champ.  With all the squirming, she somehow managed to yank out her own foley catheter at the same time, fully inflated.  Ouch!  Fortunately she didn't bleed, and well, one less procedure needed.

Seeing Annika's face again was beautiful.  I'd forgotten how much I missed that smile!  Annika's first word was "Water."  This video shows her very next thought.

"Did I miss Christmas?"  Oh my heart!  I can't imagine how it feels to wake up in a strange place with no idea how you got there and discover that Christmas came and went while you were sleeping.

Since that moment, we've reframed completely and talk often about how we are saving Christmas.  If there's one thing you learn in a hospital, it's that Christmas is not the number 25.  So many doctors and nurses celebrate early or late so that they can both help their patients and be with their families.  We are tremendously grateful to all the caregivers who adjusted their holiday plans to be with Annie.  Likewise, saving Christmas has been wonderfully hopeful, giving us all something to look forward to.

You know, being the fourth child, I never got around to finishing Annika's Baby Book.  I'm quite sure that I never recorded her first words.  Now I feel like I get another shot, and frankly, the conversation is way more interesting!  Here are Annika's first phrases post cardiac arrest:  

• Water, water!
• Did I miss Christmas?
• Hop in Bath.  
• Shower.  
• Where am I?  
• How did I get here? (When we asked Annika, she explained that she thought she'd been in a crash.)  
• Lego set.  (She must have remembered the Lego set that we unwrapped with her on Christmas day.)
• She's trying to get me in trouble. (This one was hilarious.  She pointed straight at one of the nurses and accused her of tattling after she didn't want to wear her NIRS--these stickers on her forehead that measure oxygen delivery.)  
• Can you find my retainer?  (Also hilarious.  She's rarely concerned about keeping up with her orthodontic treatment.) 

Now as for Christmas, while I can't point to an exact time, as Annika improves it seems like Santa is getting closer and closer to coming to the Wheeler home.  We are so excited!  We even acquired a cute little wheelchair yesterday to help Annika get around better once she finally makes it back.

Whenever it happens, Annika will be sure to note the date.  Her teacher Mr. Mitchell came to visit and suggested from that now on, we'll have to celebrate Second Christmas.  I have a feeling Second Christmas may always involve stuffies...

Annie Wheeler Fight Club

Any record of Annika's journey would be incomplete without including the GoFundMe page created by her Uncle Lance.  While our family has been blessed by the generosity of others in small ways over the years, we've always tried to be financially independent.  It's taken a lot of humility to allow ourselves to be the recipients of such a targeted campaign, but the truth is that we really needed the help.  Knowing that the financial burden of Annika's illness will not cripple our family has allowed us to focus on her healing during this critical time.  Even more, we have been overwhelmed by the outpouring of love from around the globe.  There aren't words to express the depth of our gratitude to those who have given so generously.  Over and over we have been brought to tears by the kindness of those we know and love, as well as the tenderness of complete strangers.

One thing I promise, though.  You have changed me.  Your love inspires me to give more freely--whether emotionally, spiritually, or materially.  Your generosity in saving Annika's heart is changing mine.  The world is a more beautiful place because of your love.  Thank you!

Annie Wheeler Fight Club Fund!

My name is Lance Wheeler, or "Uncle Lance" to my sweet 9-year-old niece, Annie.

On December 23rd, shortly before joining our family for the holiday weekend, Annie was helping her dad (my brother, Jason) prepare some gift baskets for members of their local church congregation. As they were leaving, Annie briefly complained of her jaw and chest hurting before collapsing, fully unconscious without a heartbeat.

My brother rushed her to the closest hospital, beat down the ER doors, and stared in shock as an incredible emergency team performed CPR on her for roughly 20 minutes before they could get her heart beating again. Shortly thereafter, she was put on a life-flight helicopter to Primary Children's Hospital in Salt Lake City, Utah. Upon arrival, Annie was placed on extracorporeal life support (ECMO) to help oxygenate and pump her blood, as her heart was unable to sustain life on its own. Annie is now heavily sedated and intubated, but we have seen a few special moments of her vibrant spirit fighting hard to come back to us. Most promisingly, her heart has slowly regained some function, and when her sedation has been lightened, she has been responsive to interactions with her parents and siblings.

The frightening uncertainty of Annie's unknown prognosis has caused a lot of stress, but we feel extremely grateful for the small miracles we have seen this Christmas season. We are indebted to the doctors and specialists who have worked tirelessly through their holiday weekend to keep Annie stable and as comfortable as possible.

Annie's medical emergency on Friday came on the heels of another family financial event; Annie's mother was rear-ended in a hit-and-run accident on Monday, December 19th, totaling the vehicle used to transport their family of 6.

Our family has seen an incredible outpouring of love from countless individuals. Many have asked how they can help support Annie and her family in this challenging time. After much internal dialogue, we felt setting up this fundraiser to be the easiest way for others to help.

We don't know how long Annie will need emergency medical care, but given the time of year this is taking place, Jason's family will be faced with two "out-of-pocket maximums." Additionally, they will need to manage the totaled vehicle in the coming weeks. While Jason's family does have some savings to help support some of these unexpected costs, I anticipate that the cost of longer-term care, coupled with the need to replace their family car, will quickly compound beyond their capacity.

I know Jason and his family will only reluctantly accept this communal financial support, but I also have heard from so many people that want to support them. Charity sometimes requires the tables to be turned, accepting support, rather than giving it (for once in their life!) Thank you for whatever support you feel you can give to their family as they manage this incredibly difficult season in their lives.

A photo of Annika and her Uncle Lance taken this spring.  Lance, thank you for being there for Annika to help her move forward, both then and now.  We love you!

Updates (1)

January 1, 2023by Lance Wheeler, Organizer

Thank you all for your incredible support. Jason has asked that I share this update below:

To the hundreds of individuals and families, known and unknown, who have contributed to support our Annika and our family at this challenging time: thank you.

Translating into words the emotions I feel about the events of this past week is… well. Impossible. We cruise through life, bounced and bruised at times by the pains and losses experienced by extended family members, by close friends, and sometimes even by strangers whose paths we briefly cross or whose stories we encounter in the news or on pages like this one. But mostly, the perpetual motion of day-to-day living keeps us moving along from one set of joys and challenges to the next. Then one day, the heart-wrenching adversity that has always been somebody else’s becomes your own, and it’s your own hands hefting a child from a snow-covered sidewalk into the back seat of your car, your own voice shouting "Stay With Me!!!" as you speed through the streets, your own still daughter cradled in your arms at the doors of a hospital emergency room.

Since those initial terrifying moments, we have witnessed countless individuals come together to provide life-saving care for our daughter. As the nurses and doctors at Salt Lake Regional performed CPR on Annie, I became acutely aware that her survival was fully out of my own control. It’s a strange feeling to surrender your most precious treasure into somebody else’s care—it’s an act requiring almost-perfect trust and faith. With every subsequent procedure, we have felt our imperfect faith be buoyed by the love, prayers, and faith that each of you have offered in Annie’s behalf.

While it has been a week filled with both progress and setbacks, in the last two days Annie’s condition has improved significantly. She is awake, and physically is doing really well. The doctors have begun to identify factors that led to this event and are working on a treatment plan moving forward to hopefully prevent this from happening again. Even though she will be in the hospital for some time still, the road ahead looks very promising.

When Lance first spoke with me about setting up this gofundme page, he wrapped up the conversation with something along the lines of, "I’m letting you know, but not exactly asking for your permission." This too has required a measure of faith and trust, accepting help from others who are anxious to give and whose collective capacity far exceeds our own. We have been humbled to tears by the generosity all of you have offered. At a time of exceptional worry and fear, your kindness towards our family has alleviated a significant mental, emotional, and financial burden.

With all our hearts, we thank you.

Love, Jason, Kara, Brooklyn, Talia, Eli, and of course, Annika!

Plumbing and Electrical Repairs

 January 4, 2023

Annika's surgery went well yesterday.  It took longer than expected.--nearly five hours by the time we finally were able to see her in the recovery room--but she is doing great.  Part of the reason the surgery took so long is that it was really two separate surgeries performed by two different teams.  The first step was to fix the plumbing.

Plumbing Fix:  Atrial Septal Defect Repair.  With this surgery, they went back in and closed the hole that they intentionally created between her right and left atria while she was on ECMO.  During ECMO, this hole was critically important to help balance out the pressure between the different sides of her heart.  Now they wanted to close the hole so that a blood clot wouldn't unintentionally flow between the chambers of the heart.  Normally this clotting wouldn't be a concern, but the second surgery involved inserting some leads which the body could identify as foreign material, creating clots in the process.

Electrical Fix:  Insertion of an Internal Cardioverter Defibrillator (ICD).  Obviously what happened to Annika is scary--really scary.  Now that she's recovering, one of our biggest concerns is how to prevent this from ever happening again.  I had images of me hovering near her 24/7 with an AED in hand, bribing her to stay inside and watch movies instead of doing something risky like going outside to play.

Well, Annika's ICD is the safety device that will allow her to live her best life.  Her ICD will monitor her heart continually.  If her heart enters a dangerous arrhythmia, beating too quickly for too long, the ICD will actually allow her to pass out, then deliver a lifesaving shock.  It has the ability to pace her heart if necessary, and even communicates with the cardiologist.  We now have a transmitter that will stay plugged in next to Annika's bed.  Every night at 2:00 am, the device will transmit any abnormal heart arrhythmias that were not severe enough to merit defibrillation, if detected.  Then every 90 days the device will automatically send a comprehensive report to the hospital cardiologist.  The technology really is incredible!  I feel so grateful to live in this age of advanced lifesaving equipment.  Biotechnology is my new favorite field.

So here's a photo of what Annika's ICD looks like.  It sits below her clavicle and will be slightly visible beneath the skin since she doesn't have much fat on her.

They try to set the parameters for ICD discharge pretty high so that you don't end up inappropriately shocking a person over and over.  In the unlikely case that this were to happen, they also gave us a strong magnet that we can place over the ICD to keep it from firing.  Annika also gets a special card to use going through airport security when traveling.

As far as surgical recovery goes, Annika isn't supposed to raise her arm above 90 degrees for the next two months.  She's also supposed to keep two feet on the floor--nothing like a trampoline or other fall risk where she might catch herself with her arms.

Annika was super brave going into surgery and sweet coming out as well.  Here are some pictures of her in the recovery room.

A super tough kid, she's only asked for pain medication once.  Mostly, she just wanted her Dad to read her Harry Potter.

Last funny story:  after the surgery they brought Annika a few choices of reward that she could take home with her.  I thought she would choose the fuzzy blanket, but no, she asked for the blender!

A girl after my own heart.  Thickened smoothies, here we come!

Journaling Annika's Journey

 If anyone had told me that I would spend two weeks in the hospital with my child, I would have anticipated being completely bored and stir-crazy.  The truth is, things here are busy.  There's a lot of waiting, yes, but there are also SO many consults with doctors and nurses and specialists.  I literally can't keep them straight.  If I step away for a moment, it feels like I miss out on important developments because things shift so rapidly.

For the first few days, I tried to journal but eventually gave up.  While the record may be incomplete, I wanted to share what I wrote here.  I've decided to throw all caution to the wind and share my story fully, despite how vulnerable it makes me feel.  There's no pretending that our family is fully okay at this point, so we might as well chronicle the road to recovery.

***

12:20 am December 25, 2022

Cardiac ICU, Primary Children’s Hospital

It’s Christmas day and I’m sitting in the ICU watching my baby girl.  Born at home, this is literally Annika’s first time in the hospital.  She is barely recognizable with wires and tubes and tape covering her everywhere.  I don’t think I have the strength yet to write about how we got here.  It is the stuff of nightmares that will haunt me for the rest of my life.  Plus, it’s Christmas.  I’d like to write about a few of the miracles instead.

Today Annika woke up.  The first couple of times she awoke she was confused and disoriented.  But the third time she awoke, she came back.  She could nod yes or shake her head no to questions, and held up two fingers.  A tender moment, we asked what she wanted once she realized we were communicating.  Ever so clearly, she placed both of her tiny palms together.  The very first thing my little girl wanted was to pray.

Annika has responded to lots of things, but the thing that makes her happiest are her stuffies.  When we showed them to her, she immediately reached for them and tried to smile, despite the tube filling her mouth.

Later that day I was filling her tiny arms with stuffies and asked how many she wanted.  I was surprised when she held up only one finger.  Then she used that same finger to start drawing zeros in the air.  1, 10, 100, 1000—I’m sure she asked for a million stuffed animals before her joke was done.  It warmed my heart to feel like her spunk and her personality are still there, trying to break through all the ketamine.  We aren’t sure how long her brain went without oxygenation.  There’s plenty of worry that even if her heart starts to work again, she won’t be the same Annie as before.  I know we are facing a tremendously long, life-changing journey, but I believe that if we can restore her heart, she will still be there.

Other miracles—family and friends.  When it came time to go to the catheter lab, our friend and neighbor Mary Hunt was the surgeon who performed the balloon atrial septostomy and contrast imaging of the coronary arteries.  Justin, who works at Primary Children’s, met Jason to give Annika a blessing.  Eric Buell stopped by to see Annika after his shift.  Lance, Christy, Charles, and Susie have all been here to visit, along with the Blackhams.  Sonja brought over Christmas dinner, accompanied by Janet Sirstin’s cinnamon rolls.

The biggest miracle of all, however, was how quickly Jason was able to get Annika help.  But I’ll write about it later.  After 33 hours and only a couple hours of sleep, I’m tired.

 

6:00 pm December 25, 2022

Merry Christmas!  I feel like I can write that with some genuine joy in my heart.  Annika’s health is trending upward.  Her heart function seems to be improving.  Yesterday they told me to expect at least a week of ECMO.  Now there is talk of trying to wean her tomorrow.  Her blood pressures are improving, and while we still have absolutely no answer as to why this happened, it seems like her heart may be strong enough to work again.  That makes me so joyful.

There is so much to write about, but I am exhausted physically and emotionally.  I still haven’t slept much.  I went home around 4:30 am and tried to sleep, but the house was just so sad.  It took me a while to nod off and I woke up after an hour.  At that point it was easier to just shower.  I’d been fighting the sobs (unsuccessfully), so it was nice to have the hot water pour over me and just let myself ugly cry.  After that, I gathered up some Christmas supplies and headed back to the hospital.  It’s just not a healthy place to let myself sit with my own thoughts right now.

Positive moments from today.  Annika got to see her siblings.  Okay, I’ll be honest, this was pretty hard.  My heart aches and wants to comfort them so much.  They need us desperately, but at the moment Annika needs us even more.  This is far more than any children should have to process, but we don’t have any option.  I am just unbelievably grateful to Charles, Susie, Christy, Ben, Lance, Justin, Brianna and Ruby for being there to comfort them and provide them with a somewhat normal Christmas.  Apparently the biggest thanks go to Violet, who at 12 months is the most delightful distraction.

Seeing Annie was painful for Brooklyn, Talia, and Eli, but it was hard for Annika too.  She is lucid enough to understand that today is Christmas and they weren’t together.  She misses them.  She wants to talk to them but can’t while intubated.  You can see the sorrow in her face, and it spills out as a single tear that forms in the corner of her eye.  I have wiped so many tears.

So what does Annie want?  She tries to tell us, but it is so hard without words.  We use a lot of yes/no questions, but sometimes we just can’t guess.  Well, today she managed by using two fingers to make a very clear walking motion.  “Do you want to walk?” followed by a vigorous nod yes.  We want her to walk so much too, but it’s still going to be a while.  I wish we could take the breathing tube out, but unfortunately it is one of the things that needs to stay in longest, even after she is off of ECMO because apparently the breath support actually offers extra support to the heart, kind of like a sports bra.

Other events for the day.  They replaced her gastric drainage with an NG tube.  She’s only getting the tiniest amount of nutrition: 1 teaspoon per hour, but at least it’s a start.  Menu for Christmas Day: formula.  They also put in a PICC line—a sterile procedure that is pretty invasive and takes a while despite being pretty standard.  Annika was feeling really upset, so they actually invited me in to help calm her.  I was pretty proud of myself for not fainting, despite the fact there was quite a lot of blood.  At least it hadn’t splattered all over the bed and floor like it did while they were placing a second venous return cannula into her neck the day before.  Being here is equal parts “While You Were Sleeping” and Horror movie.  Oh wait, I thought I was supposed to keep this cheery…  Well, Merry Christmas anyway.

 “That is a lot of tubes.” –The surgeon who put several of those tubes in.

3:43 am December 26^th, 2022

Add “Home Alone” to that list of movies this feels like.  My parents would desperately like to be closer, but they are stuck in Florida over a holiday weekend where there have been MAJOR storms across the country.  Their flights keep getting cancelled, and they can’t get out to be with a child they are worried about.

I’m super sleepy, so this update may not make a lot of sense, but around midnight they decided to do a trial of taking Annika on ECMO.  Lots of things went well—her labs were good and her blood pressure was largely stable.  However, she started to become very tachycardic (fast heartbeat), followed by blood pressure that started to drop.  And so, they decided not to pull off ECMO, despite the fact that it poses a pretty big threat for blood clots because of this fibrin that forms in the tube.  Well, a small clot broke away from the circuit, where they think it probably lodged in her leg.  Blood seems to be flowing okay, but this means long term anticoagulation therapy.  And now they will be replacing her circuit at 4:30 am.  They didn’t do it before because they were worried about dislodging that fibrin clot, but now that it’s already happened the benefit outweighs the risk.  This means that we will be replacing the tubing without replacing the catheters themselves.  She has a TON of blood in her urine, some blood in her sputum, and she has been given three units of blood so far with hematocrit levels still falling.  So…yeah.  Not great.  Truth to be told, I’m really scared.  Last night we had to postpone her test and the mood in the room became so terribly somber.  You could just feel this weight of sadness descend.  Jason finally explained that a child in another room was dying.  The cardiologist came in with tear-filled eyes and then had to move on to get to work on Annika.  This is so hard.  I don’t know who I’m talking to with this journal, but whoever it is, please pray for my little girl.

 

12:01 am December 27, 2022

When we first arrived here in the CICU (Cardiac ICU), several people explained to us that we should expect a roller coaster ride of ups and downs.  That’s certainly true.  Since I last wrote, things were trending down and it got worse.  They decided to replace the circuit for the ECMO at 4:30 am, requiring replacement of all the tubing and the oxygenator.  Once again her room was transformed into an ER with a sleepy surgeon who forgot to turn off his 5:00 am alarm, so it went off the entire time since he was already gowned up.   Jason and I waited outside, huddled together with worry.  This was a complicated operation since Annika’s tubing has a Y connection—anything getting mixed up wrong would be catastrophic.  Her vitals also didn’t feel very stable following the failed ECMO.  And then, one of the connectors came off and blood went spraying everywhere.  The floor looked like a crime scene.  Even today, I spent a long while cleaning up dried blood that had splattered all over the bed frame.

After this drama, I was really shaken so I went home to sleep.  I hate the empty house.  The thoughts in my head are so overwhelming that I experienced my first full-blown panic attack. 

---there is so much more to say, but I am nodding off and ought to sleep if I actually can.

6:07 am December 27, 2022

They called a Code Blue for a child across the hall.  Even though Annika’s nurses won’t leave her, you could feel the tension.  And then came the wail.  The high piercing wail of a grief so deep that I’d say I’d never heard it before.  Except I have.  This is the sound that filled my soul as I watched Annie code on Friday.  I had to close my eyes and shut my ears.  I feel such pain for the family that won’t go home with their baby.  And while I’m trying to hide it, my heart is racing and I am literally shaking with fear.

This is SO hard.

On the positive side, Annika is doing better.  She’s mostly slept, which is really what her body needs.  She wakes up really suddenly, so I find myself on high alert watching so that I can jump up to help her since she hates how the breathing tube feels and would like to pull it out.  She’s strong and fast, so much so that we finally had to put on some restraints.  I hate giving her “bracelets”, but if she were to yank out her neck cannula, it would end her life.  You’d be amazed by how many ways there are to end your life around here.  Our hearts and lungs are pretty amazing.  It takes an army of skilled caregivers to do the work of one little girl’s body.  And unfortunately, there are six little ones here on ECMO at the moment.  Our nurse says she can only remember that happening once before.

I have a specific recollection of Mary Hunt commenting on how many ECMO kids she had seen during the COVID epidemic.  She said it made her feel so worried about her boys, but then she remembered that the likelihood was still so remote—Primary Children’s had the cases from all of Utah and some surrounding states.  And here we are, an ECMO family from just a mile away.  I guess Annika really is one in a million, but I don’t like this lottery.

***

We Love Ronald McDonald!

That's a pretty solemn note to end on, so let me just conclude by talking about something positive: the Ronald McDonald House.  While our ward congregation and family have donated to the Ronald McDonald House in the past, I always thought the organization only helped families living far away.  Well, our family literally lives closer to Primary Children's than the Ronald McDonald home on South Temple.  Yet with that said, the Ronald McDonald facilities at the hospital have been a lifesaver for me.  On the third floor of the hospital, there is a giant family room where you can escape from the continual beeping of IVs and monitors.  They have a quiet room where you can shut the door and have privacy for a moment.  During the first three days of Annika's stay, this is literally the only place where I was able to catch a sliver of sleep.  They even offered us a private room on our very first right, not that we were able to rest for worry.  I've used their showers, just as I've used their washing machine to wash blankets that Annika threw up on.  Once a day I generally go down and gratefully grab a plate of food provided by volunteer families.  These meals are so appreciated, particularly when you don't want to step far away from your child.   The Ronald McDonald room provides a space where my children can relax while taking turns to visit Annika.  It was the place where we could gather with Jason's siblings to exchange gifts before they headed to Mexico.  Perhaps most importantly, this is a space where you can meet other parents who are facing similar challenges, should you wish to connect.  I heard another Mom talking about how she had a daughter who had just gotten off of ECMO and shyly explained that I likewise had a girl on ECMO.  She gave me the biggest hug and explained that our rooms neighbored one another.  She had seen us come in the first night when the trauma was greatest.  She explained that she had wanted to wrap me in a hug that night and was so glad that we could meet in person.  Her words to me, "There's hope!" made all the difference.

So the next time you are at Mickey D's, if you have a little bit of spare change, chuck it into the donation slot.  It really does bring families together.

So Many Surgeries

While the holidays are usually a joyful time, this year these days were a blur of exhaustion, anxiety, and hope.  When we first arrived at the CICU, several people explained that we should anticipate a roller coaster ride of emotional ups and downs.  They also cautioned that as hard is it might be, we needed to take care of ourselves so that we can could be there for our daughter.  With that said, it's one thing to intellectually know you ought to sleep.  Forcing yourself to drift off when your mind keeps replaying your worst nightmare is another matter completely.  As a person who loves food, I never thought I could actually lose my appetite.  Now I know what it's like to feel such deep sorrow that it's literally impossible to swallow.

So please forgive me if the chronology of these next days is a bit muddled.  Without sleep or leaving the hospital, the hours blended from one hour to the next with no distinction between night and day.  There were many procedures, but I can hardly recall what happened when!  Surgical consent forms were placed before us so often that Jason and I started trading off  based on who signed the last one.  Still here's a record of her subsequent surgeries based on what I can remember:

Second Venous Return for ECMO, morning of December 24th:

When Annika arrived on Friday the 23rd, they immediately placed her on ECMO (Extracorporeal Membrane Oxygenation), as described in the last post.  This involved putting two large cannulas (tubes) in her groin, one functioning as an artery and the other as the venous return.  There was also a smaller cannula offshoot that provided perfusion to the leg with the VA (venous arterial) cannulas.  Well, it turned out that the arterial cannula was able to handle more blood flow than the venous return.  The venous return was functioning right at capacity, leaving it super vulnerable, as if riding a knife's edge.  So after a sleepless night on Friday, they inserted a second venous return on Saturday, this time going through the superior vena cava in her neck.  There had been an IJ (internal jugular central access) there, but they'd decided they could replace it with a PICC line later.  The result was a Y-shaped plumbing configuration with two venous lines out and one arterial line in.

While less terrifying than the initial ECMO operation, the insertion of the second venous return was still frightening.  Jason and I huddled outside Annika's room once more as the surgical team transformed the space into an OR.  The chaplain came to visit us while they operated and asked if we wanted help connecting with our faith community.  We told him that we already felt well connected with our bishop.

Atrial septostomy and Angiogram, evening of December 24th:

When we arrived at the hospital, the first priority was stabilizing Annika.  Once her heart rhythms normalized, the doctors simultaneously started trying to figure out why in the world this happened in the first place.  The initial echocardiogram (ultrasound for heart) looked perfect.  Four well-shaped chambers with valves that all open and close the way one might expect.  The left ventricular squeeze was substantially diminished, but otherwise everything seemed structurally fine.

So the next step was to get Annika to the Cath Lab so that they could take a look at the coronary arteries that provide blood flow to the heart via cardiac catheterization, sometimes referred to as an angiogram.  They basically insert a tiny catheter up through a vessel into your heart and release some contrast (dye) that they can then x-ray to see if there are any structural abnormalities in the coronary arteries.  Annika's coronary arteries looked perfect--the gold standard of what you might to see.  So while this didn't identify her heart problem, it did eliminate another potential cause via process of elimination.

Since Annika was already sedated in the cath lab, they decided to do another procedure at the same time--an atrial septostomy.  For this procedure they inflated a tiny balloon to create a hole between the left and right atria of her heart.  ECMO is really stressful on the body, especially as they are pumping blood backwards through the body.  Blood can pool in the left ventricle and cause it to enlarge, so creating a hole between the left and right atria helps to balance out the pressure between both sides of the heart.

Transport:  Taking Annika to the cath lab sounds like a simple enough task, but in actuality transporting a patient on ECMO is an enormous feat.  There was SO much equipment that needed to be transported with her, beginning with the ECMO machine itself.  We had two entire "trees" of IV poles with eight lines of tubing each, not to mention the ventilator and the ECMO catheters.  It took a respiratory therapist, six nurses, and a brief planning meeting to get her moved.  Physically fitting all the equipment into the elevator was dicey, but they got her there safely.  Her transport to the cath lab was in stark contrast with her transport to the OR a couple days later.  Organized off the cuff by the anesthesiologist, he just started unplugging stuff and didn't even think ahead to clear the hallway.  Annika wasn't fully sedated and began to thrash around, which is SUPER dangerous with ECMO tubing and a breathing tube.  Then he didn't even have any drugs with him, explaining how he'd take care of it once we got her to the operating room!  Thank heavens another anesthesiologist happened to be passing by with some rocuronium (a paralytic) in his pocket.  When it was all over, we just looked at each other and nearly laughed because it was so poorly handled.  You totally could have made two videos of the perfect "how-to" and the horrific "how-not-to."  I tell you, nurses know how to get things done right, and that anesthesiologist could use a lesson or two.

Cath lab miracle:  Before the procedure began, they brought us a consent form and explained that Mary Hunt Martin would be our surgeon.  Both Jason and I gasped.  Mary Hunt is a good friend and neighbor that we have known ever since we moved into the Avenues.  Not only did Eli play Avenues baseball with her son Asher, but they also rode the bus together to Emerson Elementary.  Annika loved to hang out with Asher's younger brother, Nate.  For six years, we connected with Mary Hunt most mornings as our kids hung out at the bus stop together.  We've been to Mary Hunt's and Allison's home for birthday and Halloween parties.  We've taken care of their dog Comet.  Our families are connected.  We just never imagined we would connect like this.  Apparently Mary Hunt had been talking with the hospital about our case but forgot to get the patient's name.  When they told her who it was, she dropped the phone.  In her many years of practice, she's never been the surgeon for a friend or neighbor.  As shocking as this must have been for her, we felt relieved to know that Annika was in such capable and loving hands.  While Mary Hunt is only one of many who has worked to save Annika's life, our personal connection helped us feel like Annika was personally known and loved. 

Changing of ECMO Circuit, 4:45 am on December 26th 

We made it through Christmas day without any procedures.  We were, however, concerned about fibrin building up in the venous and arterial sides of the ECMO tubing.  Basically, blood can start to clot along the tubing itself.  While this isn't a huge deal on the venous side, it's concerning when evident on the arterial side.  We worry that a fibrin clot will break free and travel to the brain, causing a stroke.

Well, over the course of the day Annika started to develop a couple of clots along her arterial line.  One of the clots was precariously situated near the junction between the tubing and the cannula itself.   In the constant weighing of ECMO risks versus benefits, they decided to do a "trial" to see if Annika's heart was ready to go off the life support.  Her heart held steady for about 45 minutes, then began to "get tachy" (meaning tachycardia, or beating too fast) and her blood pressure started to drop.  Taking her off ECMO wasn't an option yet.

In the process of ramping up the ECMO flow once more, the precarious blood clot broke away.  Based on its positioning and the way the blood was flowing, they suspect it went to her leg but aren't completely sure.  We monitored her really closely, but luckily she didn't seem to develop any sort of deep vein thrombosis.  With this clot already dislodged, they then decided to change out the entire ECMO circuit, replacing the tubing and the machine itself in order to give her ECMO a fresh, fibrin-free start.  The procedure must have been pretty urgent because they got the surgeon out of bed early Monday morning.  They started transitioning her room into an OR around 4:45 am.  Come 5:00 the surgeon's alarm went off on his cell phone, but he'd already gowned up and was sterile.  So for the next forty minutes we all just listened as it dinged continuously!  I'm just grateful that it was a relatively calm alarm.

As you might imagine, ECMO involves a lot of blood.  In changing the circuitry, they prefilled the new circuit with blood products.  Thank you to everyone who donates blood.  You too are among the many who have saved Annika's life.  (She's O positive, in case you are curious.)  As they rebuilt the entire Y-shaped VVA plumbing configuration, Jason and I felt pretty anxious and hoped they would hook up all the connections correctly.  There's a lot more at stake than when you are just plumbing your bathroom.  

And then, just as they were getting everything sorted, one of the caps flew off, literally creating a waterfall of blood that sprayed the bed, a couple of nurses, and pooled dramatically on the floor before they were able to figure out where it was coming from and stop the leak.  Talk about dramatic.  It looked like a scene from a horror show.  Yet Annika pulled through.

After it was all over and we'd mopped up, Jason and I settled back into the room to watch Annika sleep.  From my chair, I could see blood splatters all over the bed that had been missed in the initial cleaning.  After a while, I asked the nurses if they would please indulge me and let me clean them.  The nurses would have happily done it for me, but the cleaning was therapeutic for me.  In the hospital setting, there was so little that Jason and I could do.  Not only did this give me something to do, but it was one small way to make things better.

Kicking the ECMO Habit and Arterial Reconstruction, Tuesday evening December 27th

By the evening of December 27th, Annika's heart was strong enough to take her off ECMO.  She'd passed her ECMO-free trial earlier that morning with flying colors.  Even more, it was getting harder and harder to manage her sedation.  We didn't want to keep her knocked out all the time, but each time Annika woke, she was getting more and more delirious due to all of the drugs in her system.  Jason, the nurses, and I were all on constant high alert so that we could hold her hands at the first sign of her waking.  While fairly redirectable, she still tried to grab at her breathing tube.  We were terrified that she would tear it out, or even worse, thrash around so much that her cannulas would come out.  Either scenario would be life-threatening.  So even though it was terrifying to take her off life support and pray that her heart would function on its own, I also knew it was time.

The surgery took a lot longer than expected.  Apparently they found a couple sizeable blood clots in her artery, but they were able to work balloon magic to pull them out.  The arterial reconstruction was definitely more intense than just pulling a couple lines out.  Annika has about twenty Frankenstein staples spanning her upper leg/groin. They are healing well, but this whole ECMO thing is not a minor procedure.

ASD and ICD insertion, this very moment January 3rd, 2023

And now, here we are again, anxiously waiting as Annika is in surgery.   It's been close to four hours, so we are pacing, having hoped that the procedure would take less time.  She is in the process of having the hole created by the Atrial Septostomy repaired as it is no longer needed and could be risky as she has an ICD inserted (Internal Cardioverter Defibrillator.)  The ICD will be a small box that rests under her clavicle.  Should her heart ever enter a life-threatening arrhythmia again, the ICD will allow her to pass out, then deliver a substantial shock to bring her back to life.

In some ways, this surgery should be less frightening than the others.  Instead of being emergency surgery, we prepped for this procedure and were able to kiss our brave Annika as she went into the operating room.  It's fairly straight forward for the surgeons, but is still pivotal for our family.  After all, it's our cherished little girl on the table.  I think the scariest part is that they will intentionally stop her heart and allow the defibrillator to restart it, just to make sure everything is working okay.  Just writing about it is enough to cause a panic attack.  Breathe, Kara, just breathe.

And pray.

Our Annika, brave as a Gryffindor lion.

A Beautiful Heart

Happy New Year.  Salt Lake is blanketed with fresh snow.  It feels like a beautiful, hopeful fresh start.  The snow is welcome--the crisp moisture falls from heaven and brings new life, covering all below.

There is much from the past ten days that I would like to erase and forget, much like snow disguising filthy muck.  But when the snow melts, the sludge will still be there--best not ignore it.  And some things are too important to be forgotten.

Plus, maybe that muck isn't so ugly after all.  Sitting in this hospital room listening to my daughter chat with her Dad, I feel like I am on holy ground.  This space is a place of miracles.  The dirt and grime of adversity is fertile soil for new life.  Annika knows this--she has always loved digging through the mud in search of bugs and other creatures.  We’ve always loved her adventurous spirit, but today we cherish it.  With each breath, we thank our Creator that we get more time with her beautiful heart.

***

The Collapse

On Friday, December 23rd Annika woke up happy and chipper.  It was the last day of school before winter break, and she was excited to celebrate with a class movie and hot cocoa party.  She got out of school at 1:45, ran an errand with me, then came home and hopped on the computer.  I was happy to let her play a few games since I was running around like crazy, trying to get everything ready to drive up to Heber to celebrate Christmas with the Wheeler family.  Around 3:00 Jason came home and was headed out to deliver Christmas baskets to some families in the neighborhood.  I encouraged him to take Annika with him, just to get her away from the screen.  She was pretty cranky about being asked to go.  The situation started to escalate but I took a deep breath and decided we needed to reframe.  I reminded her how she had a beautiful heart and explained how this Christmas service would be a great way to share her love with our neighbors.

Jason and Annika drove to the 4th and P chapel, where he backed the car up the sidewalk so they could load up the baskets.  Annika helped carry two, but on the next trip she said they were heavy and just took one.  According to Jason, as she started to walk back up the stairs she stopped and said, "My chest hurts.  My jaw hurts."  Then she collapsed.

For a moment Jason thought she might be acting melodramatic.  As soon as he realized that she wasn't pretending, he threw her in the car and raced her to Salt Lake Regional Medical Center, screaming her name the entire way.  Every ten seconds or so she would take a shuddering agonal breath, the body's response when the brain isn't getting enough oxygen to survive.

Fortunately Salt Lake Regional Medical Center was literally four blocks away, less than half a mile.  Jason got there, laid eyes on the ambulance entrance, and literally kicked his way in with our daughter in his arms.  He cried "Somebody help me!" and they got her onto a table immediately, beginning compressions and rescue breathing.  When it became clear that she wasn't stabilizing, he went back out to the car to get his phone and call me.

***

My Story

When the phone rang, I heard Jason's voice telling me that this was the worst phone call I'd ever receive.  He told me that Annika had collapsed and that they were at Salt Lake Regional.  Confused, I thought she had just fainted.  After all, twenty minutes ago I'd shooed a completely healthy nine year-old girl out the door to play Santa.  I'm embarrassed by this, but the first thing I asked was whether our insurance worked there or if we should take her to a different hospital.  Jason stopped me and said, "Kara, it doesn't matter.  Her heart's not beating."

While I didn't fully understand what was happening, I grasped that it was serious.  I screamed to the other kids that Annika was in the hospital and we needed to get there immediately.  We raced over to the ER entrance, where security was waiting to let us in the door.  They immediately ushered the kids into a separate room.  A few paces beyond I found 20-30 healthcare workers huddled around a tiny body stretched out on a table.  Annika’s torso was bare but she was still wearing her purple stretchies.  Her pink snow boots peeked out from beneath the table.  Her face was completely gray, but her two little messy buns looked neater than usual. 

There's no way to describe the horror of watching your child code.  It's far more intense than anything you've ever seen on TV--worse than you imagine.  I just stood there violently sobbing, wrapped in Jason's arms, as they rotated between compressions and electric shocks, regularly calling for more doses of epi or pausing to check for a pulse.  Despite the shouting and there being SO many people in the room, it was anything but chaotic.  It was more like a well-choreographed dance where everyone had their specific role to play.  Yet as parents, there was absolutely nothing Jason nor I could do but pray.  We had to trust completely in these capable healthcare providers and pray to our Heavenly Father that He not take our little girl home.

I've never prayed so hard.  If you add up every prior yearning of my heart, I'm not sure it would equal the intensity with which I pleaded with our Heavenly Father to allow Annika to stay.  I know that I'm supposed to concede, "Thy will be done," but I'm selfish.  I wanted my little girl here.  So I pleaded and I bargained.  I'm not exactly sure what I promised God, but it is a lot.  

The resuscitation felt like it went on forever.  According to her chart, they performed lifesaving CPR for a full 20 minutes, rotating compressors every minute because it is physically exhausting.  As horrible as it was to watch, my biggest fear was that they would call it and stop.  I will forever be grateful for the healthcare workers who never gave up on her.

Once they got Annika’s heart going again, it was still incredibly unstable with multiple arrhythmias.  They called for a LifeFlight helicopter to take her to Primary Children’s Hospital, even though it is a seven minute drive up the street.  It felt like it took forever to transfer her there on the helipad, but her condition was so dicey that they had to be exceptionally careful. I think the hardest part was when they invited Jason and I to come and kiss her goodbye.

By the time Jason and I got to Primary Children’s, Annika was already in the CICU (Cardiac Intensive Care Unit) undergoing surgery to place her on ECMO (Extra Corporeal Membrane Oxygenation.)  This is a form of external life support that takes over the work of her heart by pumping all the blood out of her body, running it through a circuit where it is oxygenated, then returning it.  It’s extremely risky and kind of considered a last-ditch life-saving measure, but we were desperate.  Once again, Jason and I found ourselves huddled outside a room watching a huge crowd of care providers fight for our little girl.  Once again, there was order in the chaos—each team member knew what needed to be done and played their part well.

A dozen people offered me a chair as I watched from a distance, but I couldn’t sit.  I could scarcely breathe.  My only comfort was a navy blue Minky Couture blanket that Jason had been saving for Christmas.  I swear, that blanket held me together as the tears flowed and flowed and flowed.

Miraculously, the ECMO worked.  As soon as she was on the machine, the arrhythmias stopped.  Her heart was able to rest and recover as ECMO pumped the blood for her.  Don’t be misled—her condition was still extremely fragile.  There are many risks associated with being on ECMO.  Our hearts are incredible, and despite the most sophisticated machinery and two nurses at her bedside 24/7, ECMO just doesn’t work as well as our bodies do.  It wasn’t a long term solution, and I was terrified that her own heart might not ever function again.  Still, it bought us some time.

***

Foreshadowing

Wow, this story is pretty heavy.  Just know that it is developing into a beautifully happy ending!

I will say, there are a few things that happened right before Annika collapsed that feel eerily portentous.  I find it odd that the very last words I spoke to her before she left for the church were about her beautiful heart.  It’s also strange that a couple hours before the cardiac arrest, we dropped off some donations at the Ronald McDonald house, never imagining that this organization would soon be offering much needed support to our own family.  Lastly, on the morning of her heart failure, Annika asked me if she had ever flown in a helicopter.  Crazy, huh!  Well, she hadn’t then, but she certainly has now.  

***

Miracles

The more I reflect on Annika’s cardiac arrest, the more grateful I feel for all the unseen miracles.  Annika’s heart condition was completely unknown with no prior signs or symptoms.  This could have happened anywhere—at home, at school, or while out hiking in the backcountry of Zion.  Yet this miraculously occurred at the best possible place, just blocks from a hospital, and the best possible time, when she was closely chaperoned by her father.  While I have always loved Jason, he has literally catapulted to superhero status—strong enough to sweep our daughter up in his arms with enough presence of mind to kick in the ambulance door and get her the help she needed immediately.  

If this had happened while at home or at school, I doubt she would have made it.  Every second counted.  So while some may think of church service as a burden, I see their Christmas basket delivery as a miracle that put Annika in the just the right place at the right time.

I likewise feel so fortunate to be right here in Salt Lake, living a mile away from Primary Children’s Hospital.  We truly feel we are receiving the BEST possible care from knowledgeable and committed caregivers who put their patients first—even on Christmas.  Annika has likely had this heart condition her whole life, yet fortuitously this happened after we converged here in Salt Lake, providing an amazing network of family and friends.  Our hearts are overflowing with gratitude for those supporting us from within this hospital and without.  Yes, it truly is a happy New Year, and I am so grateful we get to share 2023 with Annika and her beautiful heart.