Eternally Grateful for Motherhood--Annika's Journey

While I can't say when I will actually finish and publish this post, I started composing it on Mother's Day.  Happy Mother's Day, not only to my own mother, but to the very many who lovingly mother our children, whether as aunts, cousins, grandmothers, neighbors, teachers, or friends.  We are infinitely grateful for you.

At its core, motherhood embodies vitality and life.  Most of the time babies are remarkably tenacious and strong, transforming into vivacious and boisterous youth.  Yet this Mother's Day I feel an acute awareness of how precious, even tenuous, life actually is.  

When Annika first arrived at Primary Children's Hospital, I met another very special mother, Brianna.  I'd gone to the Ronald McDonald Room for a little rest when I overheard this woman talking about how her daughter was on ECMO.  Sheepishly I approached and explained how my daughter was on ECMO too.  Wrapping me in the biggest hug, she told me that she knew--she'd seen Annika come in and watched me weep in the hall.  She explained that her daughter Nala, a year younger than Annika, was in the neighboring room.  With love in her voice, she promised me that there was always hope.  Her words comforted my aching heart, and I felt a deep connection.  My crushing sorrow was lessened as I realized that I was not alone in facing such a immense trial. 

Even after Annika left the hospital, Brianna and I continued to text occasionally.  Her daughter had cancer and would be in the hospital for a much longer treatment period.  This was especially challenging since their family was from Vegas, leaving Brianna separated from her husband and five other children, including an eight month-old baby. I wanted her to feel that she had a friend close by, even while so far from home.

Earlier today, Brianna texted to wish me a happy Mother's Day.  When I texted back to ask how her family was, she explained that Nala had gone to rest in the beautiful sky.

Even though I never met Nala in person (you can't really visit other children in the ICU), I sobbed when I found out.  Our story could have been the same.  I can't explain why one child is healed and another is not, nor can I give a satisfactory answer to the bigger question as to why children get sick and suffer at all.  Yet through all this pain, Brianna still spoke of faith.  I trust in her promise: whether in this life or the next, there is always hope.

And so, thinking of Brianna and sweet Nala, I share the final photos of Annika's difficult yet hopeful journey.

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The Countdown.

On December 19th, I took a picture of this bookmark Talia made.  I appreciated the uplifting message, as it had been a pretty "rainy" day.

I'd been rear-ended at a stoplight earlier that evening in a hit and run incident.  The driver hit me so hard that it propelled my vehicle into the car ahead of me, totaling our minivan.

Here's Annika checking out the damage the next morning.  I got quite a few stares during school drop-off.

This seemed like pretty significant drama at the time, but in retrospect it was minor compared with what was about to come.  

December 20th--Enjoying a family dinner of frozen lasagna on fancy Christmas plates.  This is the last picture I have of Annika before the "blip."  I find it a little ironic that she is drinking water--the very thing she missed the most after returning home.

Jason's last picture of Annika is even more eerie.  He snapped  this photo at the pediatrician's office on December 21st while she was there for a routine visit.  Everything seemed completely normal.

December 22nd was so ordinary that neither Jason nor I took any photos.  And then came the 23rd, the day our lives changed forever.  I know that I already posted Annika's Hospital Photo Journey, but those pictures all came from my photo roll.  I think I'm ready to share the experience through Jason's lens as well.

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DISCLOSURE:  Some of these pictures are graphic and raw.  A true photographer, Jason was brave enough to capture the hard moments too.  Please do not read on if this is too disturbing.  I've wrestled with whether or not to post these photos, but decided that they are a pivotal part of our family story.  These pictures aren't just about trauma--they encapsulate resilience, strength, struggle, healing, compassion and most of all, love.  

December 23rd, 4:15 pm, Salt Lake Regional Medical Center.  If you look closely, you can see the reflections of Jason and I peering through the window as medical personnel struggle to resuscitate our child.  I think the sound of a "Code Blue" will always feel triggering.  I remember the doctor at the far right trying to explain how even though Annika's heart was beating again, she might not make it.

The Life Flight.  This is such a surreal memory, standing outside the circle and feeling so helpless and bone-chillingly cold, like my own heart would never feel warm again.

9:00 pm.  Watching Annika undergo surgery in her CICU room at Primary Children's Hospital.  If I'm completely honest, seeing her tiny body beneath the plastic drape feels too close to a body bag.  

It was hard to comprehend how our vivacious girl plummeted so quickly and unexpectedly.

I asked one of the nurses about protocol in the event of a power outage or natural disaster.  It's an awful feeling to realize that in an emergency situation, your child might be considered too fragile to save.

December 24th.  1:00 am.  I feel like the worry lines on our nurse's face say it all.  I know no one likes to be placed on a pedestal, but these caregivers really are heroes.

Last month we thought we misplaced Stripes, but thankfully he has been recovered and is still here to comfort Annika.

I think I only slept fifteen minutes that first night.

When Annika was first placed on ECMO, they inserted two large cannulas into her femoral vein and artery.  After several hours, they realized that the venous return was insufficient.  In order to stabilize the circle of blood flow, they inserted a second venous return into her neck. 

Waking up for Dad.

More than any neurological test, this beautiful smile showed us that Annika was still with us.  Even now, looking at it makes me weep.

Dreaming of stuffies by the dozens.

Taking Annika to the catheter lab on Christmas eve.  Transporting someone on ECMO is a HUGE deal.  Fortunately the surgeon, our friend and neighbor Mary Hunt, was there to meet us on the other end.

Here you can see the tubes of blood that are literally saving our daughter's life.

If you think this is amazing, you should have seen them squeeze everything and everyone into an elevator.

A Christmas Eve visit from our friends, the Blackhams.

Annika with her Christmas axolotl.

December 25th.  Merry Christmas.  This certainly was not the Christmas morning we imagined, but we felt grateful to still have our child.

I think the words of Annika's Uncle Ben capture our feelings best:

As difficult as this Christmas is, it strikes me in some ways as more traditional and less romantic/Dickensian. That is, we’ve often celebrated Christmas from a place of relative stability and plenty. By contrast, the Christmas story begins with a teen pregnancy, progresses to a village genocide, and ends with a family fleeing for safety to another country as fugitives. Christmas, in other words, is more about enduring trauma than avoiding it. “In the world you will have troubles. But be of good cheer, I have overcome the world.” As Isaiah says, “He will swallow up death in victory; and the Lord GOD will wipe away tears from off all faces; for the LORD hath spoken it.”

About 10:30 am the nurses enlisted my help to calm and comfort Annika as they inserted a PICC line.

Later that afternoon her siblings came to visit.   As you might imagine, seeing Annika in this condition was really hard.

Not quite the brisket dinner we'd planned.

The number of IV lines running at any one time was pretty overwhelming.  I think we maxed out at sixteen.

Holding tight to her Christmas fish.  Sick as she was, Annika was always so strong.

Nothing like a glowing sweater to bring a little Christmas spirit.

PICC, PIV, D5 NS, MAP, SBP, NPO, LR, PRN--if nothing else, nursing school has taught me how to navigate the confusing landscape of medical acronyms.  I'm familiar with the drugs now too, whether Ketamine, Dilaudid, Milrinone, or best of all, Versed.  And hey, I can interpret those electrolyte values and understand why it's really important to keep that potassium greater than 4.  But what I REALLY wanted to point out from her white board is the bottom left corner where it highlights her axolotl stuffie.

As Christmas wore on, Annika wasn't doing great.  They noticed some large blood clots forming in her cannulas and felt concerned that they could break loose and travel to her brain, causing a stroke.  And so, shortly before midnight they decided to do a "trial off" and see how her heart would do on its own without as much ECMO. 

1:11 am, December 26th.  As you can see, the white board has been mostly erased in order to record the Arterial Blood Gas lab values during the ECMO trial.  (And here I thought ABGs were just theoretical mindbenders designed to torture nursing school students!)  Fortunately the axolotl escaped unscathed.

The tension in the room was palpable as everyone stared at the screens to see how she would do.  In the end, her heart wasn't ready so they turned the ECMO blood flow back up.  In the process, the blood clots broke loose.  While it's impossible to know where they went with certainty, I suspect they lodged in her leg since the surgeon dug out two large clots when removing her cannulas a couple days later.

Alas, not the Boxing Day we'd envisioned for our baby girl.

ECMO is hard on your body in lots of ways, including the fact that shooting all the blood out of your body for oxygenation can cause the blood cells to lyse.  Processing all of these shattered blood cells can be pretty hard on your kidneys.  For a while, Annika's urine was so dark that her collection bag looked like it contained straight blood product.  Jason actually took this picture to show how much better her pee looked.  Healthy looking pee can be a very relative thing.  If yours looks like this at home, I highly recommend seeing a doctor.

5:45 am, December 27th.  Jason slips away into the foothills for a brief morning run.  This is probably a quarter mile from the hospital.

Amazing sunrise.

The monitors confirm Annika's heart is still beating.  She made so much progress that they were able to take her off ECMO.  Despite the anaesthesiologist's best effort to knock her off during transport, she came through like a champ.  It was nice to finally have that scary-looking tube out of her neck.

As for the stickers on her forehead, they are called NIRS and are used to measure tissue oxygenation.  Basically, they were trying to get a sense for whether her brain was getting enough O2.  One side often read lower than the other, so we feel very fortunate that Annika doesn't seem to have sustained any major neurological damage.

December 28th

Off ECMO (yay!) but the breathing tube is still in,

During her waking moments Annika was becoming increasingly agitated, necessitating wrist restraints to keep her from unintentionally injuring herself.

You can see that Annika looks a little sweaty from all the struggle.  Trust me, we were sweaty too.  It usually took three adults to hold her down during the most delirious moments.

But hey, at least her nails looked great!  We left one unpainted so that the pulse oximeter could get a better reading.

A close look at her vampire bite.

10:00 pm, the breathing tube is finally out.  It was such a beautiful moment seeing our Annika's face again!

December 29th.  While Annika was doing much better physically, this was one of her hardest days.  Coming off all the drugs, she was SO depressed.

Part of her sorrow was due to hunger, so a bit of chocolate pudding helped.

You know it's a hard day when not even a golden poop from your Uncle Justin cheers you up.  Hang in there, sweetie!  It gets better.

December 30th.  Feeling slightly cheerier, especially with some technology and a tiger hug.

Plus, Annika got a special heart from her Dad.  (Quote from Talia as she reads over my shoulder:  "No wonder she's got heart problems.  That looks a little small.")

December 31st.  We finished out 2022 in the ICU with a feeding tube back in.  (Quite understandably, Annika HATES having a feeding tube inserted.)  Not fun, but compared to a week earlier, stellar progress.

January 2023.  Happy New Year!  The moment we moved upstairs onto "the floor" (Cardiac Care Unit), life shone brighter.  Annika was feeling better, there was plenty of space, plus she had an endless supply of stuffies.

A special game cube from our friend, Fred Washington.

Perhaps the best part was having all the family gather together.  Annika had missed her siblings so much, almost as much as they'd missed her.

Nothing better than Jenga to reunite.

The robotics set was pretty fun too.  Let me tell ya, Primary Children's is the place to be for holiday swag.

Plus, the cards!  Talia made this adorable one.  Our sweet girl felt so loved.

Before we knew it, our tenacious girl had been fitted with an ICD and was ready to come home.

I don't know how to adequately express our gratitude for Annika's miraculous recovery, but since a picture is worth a thousand words, I'll let Jason's art try.

Love, Annika