Fourth of July at Primary's

 Great as it was, July had its hard moments too.  I know I already blogged about it here, but Annika landed back at Primary Children's over the Fourth of July.  It seems she has a fetish for holidays!  Even though it wasn't nearly as serious as Christmas, being back was still traumatic for Jason and me.  Her heart rate dropped way too low (upper 30s, low 40s), and we didn't know why.  Then, when they changed the settings on her ICD to pace her at 60 instead of 40, it was pacing her way too much--40% of the time.  Her heart monitor alarm was dinging constantly, particularly at night, since the monitor didn't know what to make of the strange arrhythmia every time the pacer kicked in.  Instead, it would flash phrases like Asystole or R on T PVCs, neither of which are very comforting.  Needless to say, I didn't sleep well.  Like a compulsive addict, I would get up to check the monitor every time it went off (every five to ten minutes), even though I knew there were nurses outside monitoring as well.  My struggles with anxiety may not be new, they have certainly reached new levels over the past year. 

On the positive side, from Annika's perspective, the hospital was fun.

After all, who doesn't love a good slushie?

Our friends Julie and Stephen dropped by and brought the most amazing treats from Gourmandise.

Julie was adorable as she hopped on the bed and listened intently as Annika taught her how to play Minecraft.

Sunsets were beautiful, and despite the dinging, Annika slept well.

I'd really hoped that we might be released in time to celebrate the Fourth of July, but once it became clear that wouldn't happen, we did our best to bring the Fourth to Primary's.  Talia pulled off our classic star hairstyle.

The nurse dropped off a Fourth of July craft for Annika to paint.

She "accidentally" got paint on her nose...

...then used the dirty paper towel to wipe it off!  (The second part actually was an accident.)

Aunt Callie came by with an entire bag of Fourth of July cheer.

Naturally, the slingshot was the favorite.  (Not to worry--the ammunition was made out of felt.)

Hanging out with her big sis.  We were under strict instructions to try and have as "normal" of a movement day as possible.  It's kind of tough when you have to carry around a monitor and can't go outside, so we walked a lot of halls.  At least the hospitals have interesting pedestrian walkways.

This looks really bad...but fortunately wasn't.  Her toy car rolled under the desk, so she was trying to fish it out.  We were in the Eccles Outpatient Building, which was empty due to the National Holiday, so at least we weren't making other people nervous.

I guess family together time is good no matter where it happens.  We certainly missed Eli, who was still at FSY.  He called the first night feeling upset to be far apart with Annie in the hospital, but once assured that she was okay, he settled in and had a great time.

The only time Annie ever slows down enough for a pedicure is while she is in the hospital.  Fun colors.

Nice stripes too!  She and Jason matched as they bonded over Minecraft.  (She loved the X-box most of all.) 

The branch president and his wife from the LDS branch at Primary Children's dropped by as well.  When they heard Annie was planning a movie and popcorn night for the Fourth, they came back with this cute blanket.

As night fell, we headed out to the third floor balcony to try and see fireworks.  In the end, the sky bridge blocked most of the view.

On the bright side, we did get to see our good friend, Jane Damstedt, who was working and stopped by to say hello.

In truth, it was a very special, almost sacred, experience to be there on the roof with all of these kids who are courageously battling serious illness.  Annika made a friend her age right away.  It was fun listening to them openly discuss all of their medical issues right along side their favorite movies and books.  They could relate and share with each other in a way that they can't with most peers.

As mothers, we chatted a bit as well.  As I listened to this Mom talk about her child's experience with leukemia and waiting for a bone marrow transplant, it seemed like the scariest thing in the world to me.  Yet as I shared a little about Annika, I could tell that she felt our story was equally frightening.  Somehow, we each gather the strength to deal with the challenges we must.  

Leaving the rooftop, I realized that even though we had missed out on the fireworks, I'd witnessed something far greater.

One other fun story--Annika's night nurse on the Fourth was Devin, the same nurse who helped Annika the evening before she went home in January.  Looking back, it was nearly six months to the day since they'd last met.  She remembered him and his Pokemon scrubs, and they bonded over their shared ADHD superpowers.  I'm so grateful for all the amazing people who have continue to watch over Annie!  I know we speak of a medical team, but sometimes it feels more like a medical army.

Leading the charge is Dr. Lal who has spent a great deal of time with us over the past months trying to puzzle out Annika's medical condition.  Long story short, they are backing away from the diagnosis of Hypertrophic Cardiomyopathy to a diagnosis of Undifferentiated Cardiomyopathy as they continue to hunt for what's really going on.  After I asked a question about her specific gene mutation, Dr. Lal went home and researched it that evening, coming back in the morning to share what he'd learned.  It means so much to feel heard and valued as a partner in your child's care.  In the end, we lowered the dosage on the beta-blocker, which returned her heart rate to a more normal range, plus altered the settings on her ICD to pace her at 50.  This seems to be the Goldilocks sweet spot for now--neither too much nor too little.  We added electrophysiology to our cardiac team, so Annika now meets with both UCHAMP and EP.  In fact, knowing that we had a lengthy family vacation planned, Dr. Lal arranged his schedule so that we could get a comprehensive cardiac work-up with both teams before we left.  Truly, we are SO grateful for the compassionate care.

Plus, Mermaids.  Thank you, Primary Children's, for blessing our family.

Proclaiming a Wish with Edwards Lifesciences: Overwhelmed with Love

 Even though it's out of sequence, I'd like to share a very special event that took place in mid-July, just a couple days before our family left on the ultimate road trip.  To tell the truth, my heart feels a bit overwhelmed as I compose this post.  Overwhelmed with Gratitude, Joy, Anxiety, Sorrow, Love--all the feels.  I'm sure some of the emotions can be attributed to our 5300 mile journey.  Yes, 80 hours of drive time is insane, but the trip was so worth the effort.  The chance to connect with family and friends was priceless--worth every nickel of gas.  My heart feels overwhelmed with love for the people who made the places so special.

Still, this post's a little heavy because it has to do with Make-a-Wish.  As beautiful and wonderful as Make-a-Wish is, it's also a bit sad because, well, sick kids.  No one wants their child to qualify for a wish.  Adding to the concern is the fact that Annika's wish is to go to Hawaii.  My heart feels such sorrow for all those affected by the wildfires in Maui.  In truth, Annie's health problems seem minor compared with the devastation of Lahaina.  More than anything, our family wants to be compassionate and sensitive to the trauma that Hawaiians are experiencing.  While Annie was originally scheduled to travel December 1st-7th (island tbd), her wish can certainly be adjusted.

Now on to the joy: her Wish Proclamation!  Many months ago Make-a-Wish reached out to us and asked us if Annika would like to participate in a Wish Proclamation sponsored by Edwards Lifesciences.  At first I was confused: Annika was already scheduled for a Wish Declaration.  Wouldn't this basically be the same thing?  

Apparently not.  You officially make your wish at the declaration, whereas a proclamation declares that your wish will be granted.  We learned that there was this medical company in Lehi that sponsors an annual Make-a-Wish fundraising event, and they wanted Annika to be their wish kid. 

Happy to help, we agreed and put it on our calendar.  Every once in a while I would get a random text inquiring about Annika's favorite food, book, color, etc.  I didn't think much about it until I got the itinerary a couple days before the event.  We were to arrive at 11:45 for lunch, but the proclamation wouldn't happen until 3:45.  In between there would be some "fun activities."  I still had no idea what to expect, but whatever was coming, I knew it was going to be bigger than the casual luncheon I'd anticipated.

Little did I know just how colossal this Proclamation would be.  It still feels surreal!  My heart is overwhelmed with gratitude to Edwards Lifesciences for all the generosity and love shown to our little girl.

***

First off, Edwards Lifesciences.  Who are they?  What does there company do?  And why were they interested in Annika?  

It turns out that Edwards manufactures heart valves.  They have 1400 employees at their Draper manufacturing location alone.  While their main headquarters is in California, they also are located in dozens of other countries, such as Canada, Switzerland, Greece, South Africa, Singapore, Malaysia, Japan, Thailand, the Dominican Republic and more.  While much of their tech is proprietary and highly secured, we did get to explore the basics.  They are able to send a manufactured heart valve in its collapsed form through the femoral artery and up into the heart via catheter, where it is re-expanded via a saline balloon.  The damaged heart valve stays in place, so the chest is never opened.  This non-invasive procedure is basically outpatient.  After a couple days, these patients walk away with a new lease on life!  While Annika's heart problems can't be solved by a new valve, we were still so thrilled to learn more about the technology that is improving heart health all around the world.

As for why they Edwards Lifesciences was interested in Annika, perhaps her cardiac history was of interest, or perhaps they just thought she was pretty darn cute.  Either way, we were blown away by the celebration they put together for our daughter.  Mahalo!  

***

The Proclamation Party Begins

After we arrived, we were met at the door by a man named Codi dressed in a Hawaiian shirt.  Imagine my surprise as we continued on to discover dozens of people dressed in their Hawaiian best for Annika.  They led us back to a conference room featuring a gigantic slideshow of our Annie.  After choosing the most colorful lei, she went right up to the front to bask in the limelight.

For lunch, they catered Annika's very favorite foods: salmon, shrimp cocktail, and cheesecake.  Plus somehow she ended up with a Dr. Pepper.  What a party!

Charles, Susie, and Christy were able to join us for the special occasion. So glad you could be there! I'm not sure anyone would believe all that happened without witnesses.

Annie, aka Little Miss Social, cheerfully worked her way around each of the tables to meet everyone. For the most part she was charming, although I'm pretty sure that at one table she only used one phrase: "I am Groot." The guy next to her told her to watch her mouth. 

This fun fellow confessed to owning an impressive collection of Hawaiian shirts, much to his wife's dismay.  After learning that Annika loves "Wings of Fire," he brought this beautiful drawing made by his daughter who is a fellow dragon aficionada.  Priceless!

Surprise Station 1: Harry Potter, Rocks, and Eggnog

After lunch we headed to our first Activity Station.  Knowing that Annika loves Harry Potter, they gifted our little witch the cutest glasses, scarf, and hat.

They had everything all arranged to get creative and paint rocks.

Eli too, of course.

They even had an entire pitcher of Eggnog waiting for Annie!  Back in January, she'd told someone it was her favorite drink, but Eggnog is pretty hard to come by in July.  Not to be thwarted, someone went to the effort of making it from scratch for her.  (With pasteurized eggs, of course.  No salmonella allowed.)  It was delicious!

Who would do such a thing? Professor Lockhart, of course! Don't curse the hand that feeds you, Annika. Remember how much you loved that 'nog! (She drank three glasses.)

Professor Lockhart's knowledge of Harry Potter trivia was remarkable.  Our little witch and wizard knew an impressive amount, but he knew the answers to a few that might have stumped even our HP expert Talia.  (Talia missed this part of the proclamation as she was off trying to take an exam for her online digital literacy course.)

Thanks to the whole team! (And the cheering squad too.)

Station 2: Top-Secret Lab

No pictures of this one because it really was top-secret!  Annika and Eli got to dress in white lab coats and goggles and watch the production of the heart valves.  The rest of us could go in as well, but unlike the kids, we weren't allowed to cross the yellow line.  All in all, it was SO COOL!  The amount of attention to detail is astounding.  Every tiny piece is inspected to meet the highest standards of quality control--variations must be less than a hair's width.  Some of the products are hand-sewn.  It takes six months of training before a person produces their first valve!  Once they are experts, they can produce two a day.

Eli was in heaven.  For a long while he's expressed interest in engineering.  Now that he's discovered the world of biomedical engineering, he may never turn back!  I really do believe he will look back on this tour as a turning point in his life.  As for Annika, she walked away with the most amazing souvenir--a personalized bookmark made out of this unique metal that can bend and regain its shape over and over again.  Not only did they design it with her name, they even included the logo for Wings of Fire.  It's amazing!

Station 3:  Rock Climbing and Shaved Ice

If you think they couldn't top all that excitement, well, think again.  When we stepped outside, we discovered our very own climbing wall and shaved ice truck.  Mind blown!  It still feels impossible.

In case you are wondering, Annika added every single flavor to her shaved ice.  Best Day Ever.

Feeling rather Hawaiian!

In this picture, we have Christy and Summer, the Make-a-Wish Development Officer who joined us for the day.  Summer lived in Hawaii for years, so she and was happy to teach Annika some important phrases.

Tackling the wall. Go Talia!  Both she and Eli made it to the top multiple times.  Annika had the most attempts and the best cheers.  Finally Jason put on a belt and they worked their way up side by side.  Dads are amazing like that.  :)

Station 5: Games and flower leis

After the rock wall, we had one more station before the Proclamation.  This amazing group channeled Hawaii with fun decorations, games, and the most beautiful flower leis and crowns.  I get teary-eyed just thinking about it.

Tic, tic, tic...time's running out!

What's more exciting than a treasure chest?  A treasure chest with a shark hat, of course!

This station was extra special.  This beautiful woman explained that many years ago she was a Wish Kid as well.  She was in the cancer unit at Primary Children's when a wealthy benefactor came by and said that he wanted to send all of the children there to Disney.  What a beautiful gift!

After hearing this tender story, Annie immediately asked if her new friend wanted a hug.  How I adore this affectionate girl!  

And now for the finale that overwhelms my heart most.  This radiant Hawaiian woman clothed our daughter in love, gifting her two beautiful Hawaiian dresses. She made the most beautiful flower crowns for both Annika and myself.  Then she invited Annika to add folded dollar bills to complete her stunning lei.  Most tenderly of all, she explained how she had lots of family in Hawaii and repeatedly encouraged us to reach out when we travel because her ohana would love to greet us at the airport.  So much generosity and love for a total stranger!  I pray that as a nation we will reciprocate the remarkable hospitality that feels so distinctly Hawaiian.

Our beautiful princess.

A thousand times over, Mahalo!

Hang loose, dear friends!

The Proclamation

Dressed as royalty, Annika was ready for the proclamation.  Confident and courageous, she made her way into the cafeteria where she was greeted with a standing ovation.  Composed even in front of a crowd of 500, she made her way to the stage and welcomed the mic.  Answering every question with candor and humor, she hammed it up as they told her story, warming the hearts of all who listened.  At the conclusion, they finally presented her with the official Proclamation.

On the way home, no one really knew what to say.  The entire experience seemed so unbelievable.  We kept asking ourselves, did that really happen?

Truth to be told, after so much excitement, we were all pretty worn out.

One glimpse at all the loot reminded us that yes indeed, we really were that spoiled.

That evening Annika said, "I know the world doesn't revolve around me, but sometimes it sure feels like it does."  You're not wrong kid, you're not wrong.  Now just keep spinning.

Thank you Edwards Life Sciences!