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.

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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.