"She's Sick.."

November 4, 2015

I had gone to bed at 5am that morning. Adalyn couldn't sleep more then 45 minute stretches by this point. So one of us was always with her.

That night she had been so calm, even through her seizures. Her breathing, for her, seemed normal. Her saturations were good. Some moments now, I try to filter through that entire night, thinking maybe somehow I missed something... That somehow... I should have been able to change the course of events...

Around 9am, David's hand touched my shoulder. He whispered, "Amanda, I think she's sick. She has a fever. Her breathing is labored."

Those words still ring in my head at times. 

My eyes popped right open. Mentally putting on my fighting gear. At that moment, it didn't even cross my mind that later that day we would be life-flighted to Primary Children's. In my mind, I thought we would get through this like every other sickness she had.

We gave her tylenol....and she calmed down.

By 12pm...we were in her pediatrician's office. When you have a special needs child, there is never a delay when you say you need to come in. Her pediatrician was amazing, and right away sent us for a Chest X-Ray.

What I remember most about that day is how brave our sweet girl was. She wasn't fussy. She didn't cry. In fact, she was so incredibly calm.

Within 15 minutes, we had the results. You would think by then, I would have known it wasn't good news. Her doctor told us we needed to get over to the hospital immediately. Her lungs were completely whited out..... Meaning....there was almost no room for oxygen to move in and out. Breathing is sort of a non-negotiable.

Even at this point, both David and I were oblivious to how seriously sick she was. This is odd...because we both have a medical background. We know how serious it is to have those type of results.... I guess in those moments...we were just prepared to fight whatever it was we were facing. Whatever we were up against, we were going to win the battle. 

In my mind, this would just be another quick hospital stay...we would get her all better....and be back home before the end of the week.

By 3pm...we were at the hospital. We didn't even have to check in...they had been notified we were coming. And right away took us to a room. We laid her on the hospital bed....and before we knew it...our world started spinning. 

*Here is a few things you need to know. St. George, as wonderful as it is....is not equipped to handle pediatrics in a critical situation. They aren't set up for Pediatric Intensive Care Unit....We hope someday, they will be. Even so....we are forever grateful for what they did for our girl.

For the next 2 hours....they attempted to get an IV in...and failed over and over. They needed blood cultures, and to start medicine. She was poked more times then I can count. David and I held her perfect little fingers. Whispering over and over that she was the bravest girl we knew. Even through all that..... She didn't cry.  She would squeeze our fingers and cringe with each poke. We stood close by. Rubbing her sweet arms and legs.

At this point. I started panicking. More and more people were flooding into the room. Her blood results came back and showed her CO2 levels way over double what they should be. Meaning, her body was becoming dangerously toxic.

Life flight was dispatched...but would take over an hour to arrive.

They attempted a CPAP machine, but didn't have the right size for her. With her numbers continually increasing, they had to get her intubated. Immediately....

David and I moved to the foot of her bed...and watched them attempt 3 separate times to get the breathing tube in. Failing each time. Her oxygen would drop close to 0.....and they would need to bag her back to breathing once more. Something that still creeps into my nightmares.

It was then my heart began to feel like glass. And the blows it was sustaining....were shattering. 

By nothing short of a miracle...Adalyn didn't seize that entire time. Almost as if....amid the all the chaos...Angels were carrying her. 

I stepped outside her room and couldn't fully breathe. Her room had over 20 people attending to her. Carts were surrounding the room...drawers haphazardly pulled out...

By 8pm...Life Flight finally arrived. They had got her stable by this point...and hooked up to the ventilator. They loaded her up into the ambulance...and off to the airport we went.

By 9pm....we were wheels up in the air. The dark of the night seemed to match my fear of what was to come. David and I could hardly exchanged words...mostly just utterly panicked looks. Tight hand squeezes. And tear filled eyes.

I stared at Adalyn that entire flight. Somehow trying to will myself to wake up.

By 11pm...we were taken to the PICU at Primary Children's. Once more, a team was already waiting for us. Right as we got there, David and I were pulled aside by two doctors. They told us because of her history...there were no guarantees she would make it through the night. No guarantee that she could recover from this...

I wanted to throw up.. I couldn't even find the words to respond. It felt like there was no air to breathe in the room. I was waiting for someone to say the words "Just kidding, false alarm!"

But those words were never said.

After midnight, Adalyn was all set up in her room. All was calm. She was sedated pretty heavily...and for once...able to sleep somewhat peacefully. David went to try to sleep for an hour in the parent sleep rooms..

I sat next to her bed....watching the mechanical rise and fall of her chest on the vent. Soaking the side of her bed with my hot tears. I laid my head next to hers and held her hand. I kept telling her I wasn't ready for this. I wanted her to know how much I needed her. How much we still needed time....

The next morning, her neurologist came to see us. Right as she walked in, she wrapped me in a hug...and once again...I sobbed. Again...we had to begin discussing what this all meant....This event didn't necessarily happen because of a sickness alone. Her seizures caused her to aspirate.. until the point that her lungs collapsed. Which was why it was onset so suddenly.  They could get her lungs cleared....but for some reason...her lungs were not in great shape to begin with. They were too stiff. And not exchanging oxygen well. Neurologically...even not taking into account her seizures...it would be uncertain if her body could return from this. Add her progressive, unstoppable seizures...and the outlook continued to darken..

At this point...her seizures had returned. Sedation...and 3 separate rescue medicines weren't even stopping them completely.

We would be there for the next 6 days... though honestly...in felt like one giant....long...horrific day. 

David and I would take turns every so often, sleeping for 1-2 hours. Yet without fail...we would have nightmares the moment we fell asleep. Nightmares of losing our Adalyn...

Waking up did nothing to remove those nightmares. 

It's odd the things the mind remembers... I remember frequently people commenting the fact I was wearing sandals with it being winter. We lived in St. George....and a life-flight trip wasn't exactly a planned part of our day. I remember the hum of her machines. I remember the smell of the  bed we had to sleep on. I remember the yellow subway tile in the parent showers. I remember how quickly it seemed that our "troops" assembled. Our incredible family dropped everything  at a moments notice to support us. Our friends were amazing... We were flooded with messages of comfort and prayers. Even people we hardly knew dropped off baskets of snacks and packages.

For the rest of my life, I will never forget that...I will never forget how it felt to be on the receiving end of the goodness of so many. 

I remember sitting in the bathroom, pleading with God to let me wake up.... to let this just be a dream. Pleading with Him for more time. I needed years and years more to love on her. 

I remember aching to hold her. Wanting to wrap her in my arms and pretend the world around us didn't exsist. Instead..having to settle for just rubbing her head, arms and legs...holding her sweet fingers.

I remember them telling us....that absolute best case scenario...we would have up to 3 weeks. 

I remember the moments Adalyn would wake up....look at us...and instantly wash us both over with the calmest of feelings. How was it possible that a girl so small....so fragile...could be the one to remind us to have courage? To remind us of her love with such simple hand squeezes? How could it be that she was the one to hold our hearts together, when our world felt like crumbling?

Honestly.... I have never been more afraid in my life than I was those days. In fact....a year later...I'm still scared of those days.  I still feel like I can't fully breathe when I think of them.

In reflecting of that day....I feel so overwhelmingly proud of Adalyn. She was the calm in the middle of the hurricane. I feel so humbled and grateful that I get to be her mom....so grateful for all the things her beautiful, perfect, soul teaches me. I'm beyond convinced she is among the bravest and most graceful souls to ever live. Her middle name Grace couldn't be more fitting for her. She fought the hardest of battles...yet did so with so much grace.

I couldn't prepare for what was to come. Neither of us could. Yet....somehow...in the middle of our deepest darkness...Her light remained constant. Her goodness remained so pure. Her love...remained so full.

Even today, that hasn't changed one bit.