I remember going to the Peds floor, to meet my new little patient. My first look at the tiny little one will be forever in my mind. She was so small, and my heart melted when I looked into those beautiful dark eyes. Her mother came into the room and shook my hand. I remember thinking this is going to be a great mom, something about her just made me smile.
A few days later my patient was discharged to home. The first shift I spent putting the phlethora of equipment together that was needed at home, and fending off the brisk case manager who kept making me feel like I was back in school. The mom kept grinning at me, as if to say, it's going to be okay, she can't stay here forever.
Finally it was just me, my patient, and her mom. I just love my new patient, I love her baby smell after her bath. I hug her and kiss her, she's so much fun. Every day she gets stronger, smiles, and eats so well. She's getting bigger, and mom's memories of the little ones heart surgery and subsequent 4 month hospital stay start to fade. She's doing so well, learning all that her wonderful physical therapist is teaching her. Her appointment at the pulmonologist goes well, maybe soon she can get rid of her trach. Laying on her belly still makes her sad, but she rolls over and over, holds her little rattles, and smiles. She has 4 brothers, and her mom waited so long for pink.
She's getting used to being suctioned, just gives you that look like, will you hurry up and get it over with, I have lots to do. The days pass, I am excited to go to work, for the first time in a long time. Her mom and I love to dress her in pretty little outfits , and put her hair in little pony tails that stick up from her head, and we both smile and tell her how cute she looks.
This winter has been mild, we talk about taking her out for a walk soon, when the weather gets warmer. She loves to sit in her pink bouncy chair, and is happy when the vibration is turned on. So quickly she learns how to pull the little pink handle and make the music play. It's like she is in a hurry to accomplish all the things she should be doing. She learned long ago how to roll her foot and pull the wires to make her apnea monitor alarm, and we pretend to scold her when she does it for the 25th time in one day, but usually we just laugh.
One of her diagnosis is Downs, but I study her beautiful face when I hold her, and I don't see it. I study her little hands and don't see the creases either. Work is so fun, I just love taking care of her, and I bring her a red teddy bear with hearts on it for Valentines Day, she's not allowed to eat chocolate yet...ha ha! One day I bring my camera and we take pictures of her, beautiful pictures, she smiles and makes funny faces, and we laugh.
Every day, I bound up the stairs to their 3rd floor apartment, hearing the morning sounds of their day starting. The compressor humming, her brothers laughing at morning tv, and the who is it when I knock on the door. Until the day I am walking up the stairs and wonder why I am not hearing the familiar sounds I hear every day........I start to knock and a police officer opens the door. My eyes fly to her crib, it is empty. I ask what happened, they say I'm sorry, she didn't make it, she's gone. My heart falls to my feet, and it is broken. They ask me questions, what are these machines for, how was she when you left yesterday. I answer, but it's like I'm dreaming, or someplace else.
I leave, go to my car, and sit there, still not believing what I know has happened. Crying I call my agency and tell them the news. My cell phone rings, it's her mom, she says, "This wasn't supposed to happen!, Please come and tell her goodbye." I drive to the hospital where it all began, but this time, I go to the Peds ER. I am ushered into the room, she is in her mother's arms looking like she is asleep. We cry together, tears running down our faces, then her doctors and nurses, who cared for her in the hospital, come in to say goodbye. They too are in shock and tears are falling from their eyes, no one can believe it. I finally go home and cry some more. I get the pictures made we took that day, they are the only pictures her mom has of her. The day of her services, her mom comes running to me the minute I drive in. More tears, and her brothers all look so brave, they are 2, 4, 6, and 16, she was only 8 months old when she died. I just never saw it coming.
