New Year Reflections and Nikolaustag

Happy New Year!  Our sweet Annika is finally home.  Never in my life have I felt more grateful for the blessing of sleeping in my own bed.  It's delightful to see Annika stretched out on the carpet building Legos.  Hospitals may be a good place to receive critical care, but they are a terrible place to spread out on the floor and be "normal."

Considering the magnitude of Annika's surgery, she's still a bit sore and the follow-up appointments are intense.  We came home from the hospital Saturday at noon and was back at clinic at 7:30 am Monday for a blood draw, followed by appointments that lasted five hours.  Still, it's so much better than lumpy hospital beds where your sleep is constantly interrupted by beeping IV poles and vitals.

Our New Year's celebrations were chill--just our immediate family.  Given Annika's immunosuppression, we are living a life of pandemic-style isolation.  I've felt a surprising degree of stress, unrelated to New Year's resolutions.  With Annika coming home, I suddenly feel like I have to be perfect.  And what's worse is, in some ways, I'm right.  When it comes to her medication regimen, 100% compliance is the expectation.  Every dose of every medication every day right on time--no exceptions.  Lab draws precisely at trough with check-in 30 minutes before you would normally take your meds.  This feels like a lot right now, but we have a plethora of alarms set on our phones and I'm sure it will become routine.

More challenging are the gray areas like nutrition where I feel like I need to do so much better at feeding the entire family a heart-healthy diet.  I'll never be perfect here--not even close.  And if I were, there might be total revolt.  To be completely honest, my family doesn't want me to cut out all processed foods, refined sugars, red meat, full-fat cheeses, etc.  We have to find a healthy balance where we can still fully enjoy life, including dining together, just with better choices most of the time.

The hardest area is feeling like I need to keep Annika perfectly safe, even when I know that's not possible.  We can't live life in a bubble, and even if we could, it wouldn't be the best thing for her.  Her social and emotional well-being matter too.  At some point, she is going to get sick, and feelings of blame and guilt will not help.  While it's wise to be careful, I also need to breathe deeply and chill.  It's going to be okay.

Whoa, thanks for letting me vent.  This isn't where I expected this blogpost to go.  Instead, I opened up my computer to share fun pictures of our hospital life pre-transplant.

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December 6, 2024

Reindeer today!  Annika just woke up and these were the first words that came out of her mouth. 

Yes indeed, two reindeer appeared in Primary Children's parking lot and we were permitted to go outside to say "hello."

Annika particularly enjoyed learning about Holly, the older reindeer who had some massive health issues and experienced many of the same procedures these kids are enduring: CT scans, intubation, breathing treatments, and more.

Looking back, I think December 6th may have been the peak of hospital fun.  Seems appropriate for Nikolaustag--St. Nicholas Day.  Annika also got to go the playroom and make a dragon on the 3D printer.

She picked out the filament and design for this cool guy as well.

Annika got to meet with her sixth grade class over Zoom.  Jason went in person to teach them a little bit about her heart, then Annika got to answer questions about hospital life.  She was a little nervous about this class visit, but it worked out beautifully and she felt so very loved.  Afterwards, Jason brought back some special treasures from Wasatch, including hand-written notes and a wolf that the entire sixth grade had high-fived.  If she ever misses them, she can just high-five it back.  :)

Annie's friends James and Ellie came to visit!  We went down to Seacrest studios and made slime.  Then Annika showed everyone how to use a straw to blow giant slime bubbles.

We caught the Elf on the Shelf up to mischief...

Then Annika, Jason, and Jess made a mountain of snowflakes.

Topping off the evening was a visit from Uncle Lance, complete with the softest rein-puppy you've ever met!

That evening I visited the meditation room, but rather than place a burden in the basket, I simply pondered our very many blessings.

Sweet dreams, Annika Mae!  You are so loved.