Missing Sissy

She was one of the neediest patients I ever took care of. Being trapped in her isolation room in the hospital for 12 hours at a time was a very good preview of motherhood, actually. Putting someone else before my own needs...real professional needs at that time - I needed to chart, to give her meds, to check her heart function. She didn't want her meds, and didn't care about her heart function. She just wanted to sing the songs from Annie and squeeze my hand while I rocked her, endlessly, for 12 hours at a time. "The sun'll come out tomorrow...bet your bottom dollar that tomorrow, there'll be sun..."

She had hypoplastic left heart and tetralogy of Fallot, two heart defects so severe that the only thing that gave her hope was a heart transplant. She got one at age 2. But her mom wasn't very good at giving her medications, and she went into rejection and was abandoned at our hospital front doors in a high-speed drop-off so well-planned that we didn't even have a license plate number for the car. Just a tiny little 4 year old, golden curls blowing in the April breeze, big blue eyes already smiling at the staff coming out to rescue her.  

She never asked for her mother. Not once. Instead she asked for that particular song, "Tomorrow", over and over and over again. And for cuddle. "Will you cuddle me?" Any hour of the day or night, you might hear her plaintive call from the Vail bed where she lived out her days.

And so I sang to her, reluctantly and self-consciously at first. Jesus whispered constantly over my shoulder when I sat at the computer typing those long notes, so I spent a lot of time unzipping her Vail bed prison and rocking her, just because isn't that what you do to show love to a motherless child whose heart is dying inside her? I took a lot of heat from the other nursing staff, the ones who didn't care to rock children all night long. They worked in the ICU for the intensity of it - the caring for silent, paralyzed fragile bodies whose hearts beat visibly underneath Goretex patches and whose dozens of IV pumps made their tiny bodies almost invisible in the chaos and demand of the medical treatment.

She got her second heart transplant after 9 months. Every one of my shifts during those 9 long months was spent caring for her, and sometimes her roommate - usually a "breather" or "feeder" (a NICU graduate who just need to get the hang of feeding or breathing before they could be transferred out of the intensive care unit). One night I came to work and she wasn't in her bed. The evening nurse was cleaning up the various toys she had amassed, getting them ready for transfer back into the general playroom toy population. 

At first I thought she died.

But she was in surgery, getting a new heart.

She was on the heart-lung bypass machine for two months and I couldn't even go in to see her. As a float pool nurse, I didn't have the special training necessary to care for the most acute kids, the ones who came back from surgery with a silent heart, their blood going in and out of their body to a machine through giant snaking tubes taped to the floor. I peaked in one day, and I knew she wasn't doing well.  The next time I peaked in, I put my reputation on the line and sang the chorus of "Tomorrow" from the doorway. There was some giggling at the nurse's station behind me, but the little child swollen and bloody on the bed twitched just once to let me know she heard.

Two days later, she was off the heart-lung bypass, and I was her nurse again. More long months, this time with an anxious child in pain, trapped in her bed by wires, cords, feeding tubes, and ventilator tubing. I tried to sing to her, but it didn't calm her much. The only thing that really worked was stroking her head. Even better were the few shifts when I convinced another nurse to come help me untangle her and put her in my arms in the rocking chair. I would put all her syringes of nightly medications on one table, and the suction equipment and oxygen on the table on the other side of us. And rock all night long. One night I thought I was going to pee my pants. But it was the only time in all those months of healing that this little girl slept through the night, totally limp and peaceful. I was afraid to move a muscle.

They finally took the breathing tube out of her six months after her heart transplant. I applied to become her medical foster parent. I dreamed at night that she would someday really be mine.

It's a boundary nurses are warned about crossing. Taking the relationship built in stone during a patient's hospitalization outside the walls of the hospital risks harm to the nurse, her professional reputation, and the person she reaches out to. What if things don't work out? Where does that leave the patient? 

Then sometimes common sense trumps professional codes of ethics. The social worker who handled my case could see the benefits to this child, and approved my application. I was nervous...my roommate was not excited about having a high-needs child in our previously childless home. I had only talked to my parents about it briefly. So, with papers in hand, I went to the hospital to tell the only person who was going to be totally excited about my plan. 

I heard the code blue alarms all the way from the entrance to the hospital. But it wasn't until I heard them again while walking onto the pediatric ICU that I realized it was one of our kids. I asked at the desk who it was, in street clothes, wondering if I should try to help.

They told me it was her. She'd been down for over 30 minutes.

I sat at the nurse's station and waited. For another hour. An hour and a half before they "called it". I showed the charge nurse the papers in my hand. She was genuinely sorry, tears and all. She held my hand as we walked over to the now-quiet room that had just been vacated by a full team of respiratory therapists, doctors, surgeons, nurses, and anesthesiologists. There were needles, clamps, and surgical drapes littering the floor. One of the defibrillator paddles hug askew off the edge of the crash cart. The crash cart stood open, syringes emptied, paperwork in piles. The nurses would be back in a few minutes to clean up. Transport had already been called, to zip my little girl up in a rubber bag, cover her in a sheet and take her down to the morgue.

She looked just the same. Except she'd been carved now out of marble, a blue-veined  beautiful marble that Michelangelo might have chosen for his next sculpture. Her lips were bright scarlet red, the color they turn when someone dies that way. Parted over teeth, two of which were broken when they tried to put a breathing tube down her throat with the metal introducer.

I hugged her and I cried like I never cried as a nurse. I cried for a dream and I cried for the futility of it and I cried because I felt so alone and lost and without Jesus that afternoon when I held a little girl I thought I might adopt someday.

The next few days were numb. She was buried in the prairie grass of South Dakota. Her grandmother came to drive her home. Her mother never attended any of the services. I dream of her still. My Antonia on the prairie, prairie hair in prairie grass. I understood slowly what she meant to me. Someone who could smile with a heart that pumped sludgy dark blood through stiff veins, someone who laughed and cuddled when death was slowly creeping up the limbs and squeezing everything vibrant out of her, inch by inch. She loved me from the first day I walked into her room,  simply because I would sing when no one else even heard her request.

I learned I can't predict this Consuming Fire I serve. He taught me sunset is a beautiful view...if you enjoy it just for the view. If the beauty of sunset is only enjoyed because of the promise of sunrise, you will lose so much. It doesn't matter where sunrise occurs, on earth or in heaven, the sun does come up Tomorrow.

The sun'll come out
Bet your bottom dollar
That tomorrow
There'll be sun.

Just thinkin' about
Clears away the cobwebs,
And the sorrow
'Til there's none.

When I'm stuck in a day
That's gray,
And lonely,
I just stick out my chin
And Grin,
And Say,

The sun'll come out
So ya gotta hang on
'Til tomorrow
Come what may
Tomorrow! Tomorrow!
I love ya Tomorrow!
You're only
A day

I hope Jesus lets me be her Mama in heaven. I've got a whole mansion there I'd love to share with Sissy.