Blessed

 Yesterday I received an e-mail notifying me that Blog2Print, the company I use to print out our blog books, is going out of business.  Drats!  For years I've printed out a hard copy of these blog posts as my Christmas present to our family.  I'm sad to see that end.  In the meantime, I have until May 15th to order any remaining books, so don't be surprised if you see a flurry of activity between now and then.

On December 15th, Annika went back to Primary Children's Hospital to have her ICD replaced, along with a few other diagnostic tests and tune-ups.  I blogged a little bit about it here, but wanted to share a few more pictures.

A few snuggles with my baby girl before her procedures.

This little gal is so brave.

It was four and a half hours before we were finally reunited.  Sure love that smile, even if it is extra wonky when drugged.

When Annie woke up, she was so thirsty.  Perhaps we should have held off on the slushy because she promptly vomited it all up.

Here we are all settled in our room in the Cardiac Care Unit.  Naturally Annika was thrilled about all the Minecraft.

Before we knew it, we were on our way back home.  Thanks to our friends and neighbors, the Kubinskis and Zollingers, Annika had a few new stuffies and a giant meal waiting for her.

It's no wonder that this girl has good feelings about the hospital.

Thanks to all for your love and prayers! Thanks to the many doctors and nurses who helped her through the surgeries, and thanks to the new ICD that has already saved her life.  Everywhere we look, we are so blessed.

Sending Love to All Hearts Everywhere

 Hello friends!  Happy Leap Year.  How's everyone enjoying their extra-long February?  It's the month of love and hearts.  There have been many years when I would have welcomed an extra day in February to pull off Christy's epic Run Swim Bike Cook, but this year I didn't even try.  Let's be honest: I'm tired.  This final push to the end of nursing school feels a bit grueling.  I just have to keep reminding myself that I'm nearly there!

Much is on my mind today.  My heart is with my Grandpa John Wells who is rapidly declining in Florida, as well as with his wife Elaine, my Mom, and my Aunt Alison.  It doesn't matter when it happens--it's really hard to say goodbye.  Grandpa Grandpa, we love you!  We are sending all our love and every prayer.

My thoughts are also with Annika, who is home sick with a stomach bug today.  In my last post, I was pretty open and honest about our feelings surrounding heart transplant.   Well, the conversation wasn't quite that easy to dismiss.  At the end of January, her cardiology team reached out to our family with a strong recommendation that Jason and I participate in transplant "boot camp."  After careful review of Annika's case, the general consensus was that we needed to give serious consideration to listing her sooner rather than later.  "Boot camp" turned out to be a seven hour transplant evaluation where we met with a nurse, cardiologist, social worker, dietitian, pharmacist, financial coordinator, and cardiothoracic surgeon.  Needless to say, the day was a lot, especially the candor of the surgeon.

As difficult as it was, Jason and I left boot camp feeling better informed.  We came a long way in understanding the viewpoint of her cardiologists and why they see her as such a strong candidate for transplant.  They believe, and probably rightly so, that she would feel lots better with a transplanted heart.  To them, transplant seems kind of inevitable, so they would like to get her on the list while she is still strong and healthy.  For Jason and I, the necessity seems less clear as we interact daily with a child who usually seems fine.  We felt respected and heard as we expressed our own concerns about the risks and outcomes of transplant.  

Needless to say, the decision about whether/when to list Annika for transplant is huge.  It's extra challenging because in many ways, the decision feels like it shouldn't even be ours.  At the end of the day, it's her body, her life.  Yet at this point, we as parents ultimately have to make the call and pray that we do the best we can for our little girl.  Needless to say, it's something that we think and pray about constantly.  

Yesterday the team contacted us with the formal results of the evaluation.  As expected, they recommended we list Annika for transplant.  Ultimately, we've decided to hold firm to our original decision to not list her...yet.  Still, we don't want to be foolish and turn a blind eye to signs and symptoms that indicate a marked downturn in quality of life.  We've made a concrete list of parameters that would indicate that it's time to re-evaluate and potentially list.

Our list of indications that it's probably time to get on the transplant list (1-2 years wait time):

• Can't walk to school (0.4 miles, mostly flat)
• More than 2 shocks in a year (we originally set this number to 3, but given her higher beta-blocker dosage, Dr. Lal thought this threshold was probably too high.)
• Shortness of breath climbing the stairs in our home
• Regular nausea/vomiting, weight loss, or loss of appetite
• Experiences chest pain without exertion
• Experiences chest pain with exertion that doesn't resolve quickly
• Feels substantial social isolation from peers related to inability to participate in activities
• Significant deterioration in cath lab measurements, particularly related to pulmonary perfusion (Dr. Lal said some level of decline should be anticipated, so we probably shouldn't let the numbers drive the decision unless they are terrible.)

Writing this list feels surreal, almost like an assignment for nursing school.  I am so grateful that nursing school has given me the ability to "talk the talk" and better understand the pathology of what is happening with Annika.  I would say that cardiac function, heart failure, and transplant come up as major topics in at least 80% of my classes.  This base level of understanding has been so empowering in helping us engage in the decision-making process instead of relying solely on her medical team.  

Making this list has also provided a great amount of peace because it no longer feels like we need to revisit this decision every day.  While we are still open to all conversations with her doctors, as long as we haven't met any of these parameters, we feel comfortable stating: "it's not time."

But hey, it IS time for living each day to the fullest and sharing as much love as we can.  Tonight I am flying to San Francisco with Brooklyn to watch her play in an Ultimate Frisbee tournament on Saturday. I am so excited!  I cherish these moments with all of my babies.

The Blip Blooped

 Back in June, I wrote a little bit on the blog about how Annika's cardiac arrest felt like a Blip.  It was a surreal, life-altering occurrence that we hoped would be a rare outlier.  Singular.  One and done.  

Unfortunately, a week ago Thursday the Blip blooped.  The day was pretty much terrible all around.  I'd had a screening colonoscopy and wasn't allowed to drive post-anaesthesia, so I asked my neighbor to pick up Annika.  They had trouble connecting, mostly because Annika forgot.  When Annika finally remembered, she started to run around the school to the pick-up spot with her heavy backpack and it was just too much for her heart.  It went into venticular tachycardia (or V-tach, as they say in the medical world) and she passed out.

I got a frantic phone call from my neighbor saying that Annika had collapsed, she couldn't get her up, and I needed to get there NOW.  Anesthesia be darned, I grabbed the keys and dashed to the car but it was COVERED in snow.  Absolutely no way to drive until the car was scraped.  Oh, the panic!  

I called my neighbor to ask if she had called 911, but by this time Annika had revived.  By the time I made it to the school, Annika was standing.  She seemed a little dazed and frightened, but she was okay.  My poor neighbor was more traumatized than my daughter.  I can't imagine what it must have been like for her, especially with her own young children in tow.

I took Annika home and immediately called her cardiology team at Primary Children's.   At this point, I wasn't sure if Annika had experienced a dangerous arrhythmia or just fainted.  We sent a remote transmission from her ICD (thank you bluetooth technology), and they confirmed the arrhythmia and subsequent shock from her defibrillator.  I say "arrhythmia" because it feels less serious, but let's be straight forward for a moment.  V-Tach is deadly.  Annika's ICD saved her life. 

From Annika's perspective, the event was relatively minor.  She remembers blacking out but doesn't recall the shock.  (That's a blessing because they can be pretty painful.)  Her chest was a little tender around her ICD so we skipped sewing that afternoon, but she felt well enough to be a ghosty in the school musical "We are Monsters" that evening.  Our little girl sang her heart out, and once again we felt such gratitude that she was with us.  

Real-time enlightenment:  I don't know how I missed it at the time, but all of a sudden I am struck with the irony of the situation.  Our little ghosty (front row far left) nearly took her role far too seriously, going completely into character.  Shivers up my spine!

Given this recent scare, it made sense that Jason and I should have some deep conversations with Annika's cardiologist.  After Annika's ICD replacement in December, her team suggested we schedule a "pre-transplant informational meeting."  This was meant to be an educational opportunity to learn more about transplants so that we can consider this treatment option from a place of understanding.  When the meeting was scheduled originally, I kind of felt like it was too soon for this heavy conversation.  After the bloop, the timing felt just right.  If defibrillation is going to happen regularly, we need to be prepared.  To quote Annika's cardiologist Dr. Lal, "She's tried hard to die on us--twice."

The meeting was intense but very helpful--ninety minutes of one-on-one conversation with Dr. Lal and Karla, a transplant nurse. We've covered transplants briefly in nursing school, but I learned SO MUCH more.  Transplant is huge! In general there are three main concerns: rejection, infection, and cancer.  

Because rejection can be fatal if an arrhythmia occurs, post-cardiac transplant patients are monitored VERY closely.  They have to have a full cardiac catheterization with biopsy after 2 weeks, 4 weeks, 6 weeks, 3 months, 6 months, at the year mark, and then every year until 5 years, when it tapers to every two years.  There are frequent labs and follow-up visits, and a huge regimen of medications, most of which are prescribed for life.  Tacrolimus, mycophenolate, and a steroid are titrated and prescribed as immunosuppressants to curb rejection.  Bactrim, nystatin, and acyclovir are given as prophylactic medications to help with infection. The list felt like a review session for my pharmacology class.  I don't know a ton about these meds, but I know enough to understand that some of them come with serious side effects, with the worst being kidney damage.  Besides kidney disease, there are other serious comorbidities that pop up in young transplant patients, such as hypertension and high cholesterol.  Even more concerning is the high incidence of PTLD (Post-Transplant Lymphoproliferative Disorder.)  This uncontrolled cell growth is basically cancer that is unique to post-transplant patients.  Finally, it's important to remember that heart transplants don't last forever.  We were given 14 years as an average.  While a donor heart could last significantly longer, it could also be less.  Retransplantation (a second or even third transplant) is possible, but the hard reality is that outcomes for retransplants are usually worse.

Transplant has its advantages too.  On a day to day basis, Annika would likely feel better.  She could enjoy activities that are painful or difficult for her now, such as running, playing sports, or hiking.  We could let her ski without living in fear that she will collapse in the trees.  The difficult thing about Annika's heart right now is that it doesn't fall into any neat boxes of diagnosis.  While we know there are major problems, it's difficult to predict what will happen in the future.

Pondering all of this has made one thing very clear to me.  Barring a significant change in Annika's condition, we are NOT likely to pursue transplant as a treatment option any time soon.  Her quality of life is just too good!  Sure, she can't play sports, but there are all sorts of things that she can do and loves doing.  She likes school, Girl Scouts, her sewing class, and bouncing on the trampoline.  She takes piano lessons from Grandma Susie, crafts constantly, and regularly has her nose in a book.  Yes, her heart is temperamental, but I think I trust it more than I trust a transplant.  If she didn't have her ICD, I might feel differently, but ultimately defibrillation worked.  We've tripled her dose of beta blocker to help prevent further arrhythmias, but should it happen, I'm hopeful that "Fred and George" will take care of Annie.  (Her new ICD has the same name as the first.) 

When I think of Annika, the word "vibrant" comes to mind.  She is so full of spunk and life!  It doesn't surprise me that her heart is one of a kind, refusing to conform.  She does very few things in the "normal" way.  As long as Annie feels well and is full of this vibrancy, my vote is to give her heart the chance to provide a long and beautiful life.

So ghosty, you're cute, but no more scary bloops!

Joie de Vivre

 Today is Second Christmas.  Yesterday marks a year since Annika came home from the hospital.  We don't have any special plans to celebrate, although I kind of think we ought to host a play party where all of her stuffies are invited.  It might be interesting to get an official guest count.

Over the last couple of days, Salt Lake has gotten its first real snow fall for the season.  For some reason, this blanket of snow brings me back to our days in the hospital more than anything else.  Descending from heaven, it both stills the world and brightens it--kind of like the Prince of Peace.  It offers reassurance that there is hope and beauty even in the hardest trials.

Running the path between our home and Primary's yesterday, I felt such deep gratitude.  A year ago we had a small wheelchair in our living room because Annie was still quite weak. A year later, and she can trot home from hospital appointments.  (We did that a few days ago.)

While we may not be having a large Second Christmas celebration today, we definitely recognized this big milestone over the weekend.  

On Friday, Annika had her Make-a-Wish Star-Raising party. This was a beautiful opportunity to celebrate the granting of her wish with many people who love her. Both sets of grandparents were there, the Wilhoits, the Millcreek Wheelers, all her siblings, plus her wannabe boyfriend Arthur! (Brooklyn and Arthur were a couple a year ago, and he came to see her multiple times in the hospital.)

Here's Annie with her volunteer wish coordinators, Kaitlyn and Tami.  We appreciate them so much!

Nothing says party like pizza.

Oops, I take that back about Arthur being Annika's dream boyfriend.  Apparently she has a new crush in the sixth grade named Ruger.  Here she is dancing with a palm tree and singing an invented song about him.  Violet followed suit.

Checking out photos of our Hawaiian fun.

We assembled a couple of scrapbook pages that will be kept at Make-a-Wish headquarters.  So far the Utah Make-a-Wish chapter has 31 binders full of granted wishes.

Natalie gave us a lovely tour of the Make-a-Wish building.  This front wall highlights some special wishes, ranging from a drumset to a blessing from the pope to a Secret Garden.

Upstairs there is another wall with more fun and creative wishes.  Apparently Make-a-Wish began when a little boy wished to be a trooper and the community came together to support him.  As for Hayley, she wished for her very own ice cream flavor, and worked with the food scientists at Ben and Jerry's to make it happen.

This wish made me cry.  14 year-old MiaBella is a heart transplant recipient.  While she originally contemplated an animal wish because she wants to be a veterinarian, she instead used her wish to send her donor family to Disney World.  Dang it, I'm tearing up again.

One more memorable moment: there was a photo of a girl who wished for a horse to be her rodeo companion.  When Annika found out, she immediately said, "Oh man, I should have wished for a horse!"

Here is the wall of current Wish Kids and their wishes.  The different colors represent wishes to have, wishes to be, wishes to go, and wishes to meet.  Next week they are granting a wish to meet Mark Rober. 

Annika with her star.

Posing for a pic with cousins.

Oops!  She held the magnetic star too close to her ICD and started to beep.  At least we know the new ICD is working.

Opening up the Wish Wizard tower with a special Wish Kid key.  So much love and support!

A magical place, this is where you send your wish up to the wish wizard.  Annie got to light up the tower and let the community know her wish had been granted.  Personally, I love seeing Violet's tiny hand on the water wall.

Last but not least, the star raising.  Annika's star has a teal center--her favorite color because it is the color of the ocean.

We are thankful to all for making big sacrifices to celebrate this special moment with Annika.  Charles and Susie drove down from Hyde Park just for this, only to turn around and drive to Idaho that evening.  NomiAnn and Papa Kay made an extra trip out from Nebraska for this and a few other celebrations.  Uncle Justin had to fight traffic on Foothill on a Friday night in a snowstorm.  That's not to be trifled with either!  Thank you all for coming.

Having been given so much, we wanted to give back.  On January 6th, our family provided lunch for the Ronald McDonald room at Primary Children's Hospital.  This is a place where families who have kids in the hospital can come eat for free.  Jason and I ate there often while Annika was in the hospital.  It was an inviting space and welcome break from cafeteria food.

We couldn't have provided this meal without the support of NomiAnn and Papa Kay as well.  Cooking a meal for 75 is way outside of my comfort zone.  I'm so thankful to my Mom for guiding me through it!  (And splitting the grocery bill, too.)

Happy chefs.

Taking a moment to unwind.  (Okay, let's be honest.  Annika was so engrossed in her book that she never really helped at all.  We'll work on that.  At the time, it seemed okay to have a little less chaos in the kitchen.)

Who will help me eat the bread now?  I will!  I will!

Querida princesa, time to take a lesson from the little red hen.  We are delighted that your wish was granted and even more grateful that you are here to share your joie de vivre with us all!  Now take all that blessed health and happiness, work hard, and make the rest of your wishes come true.