A portrait of my child, once a week, every week in 2013

It’s strange for me, the realization that my daughter has turned 1. Yet one year ago we were still in the hospital. She wouldn’t come home until October 9th. And then 9 days later we would be readmitted.

My brain has been replaying those events, so long ago already, yet not far enough.

At four days old my daughter was loaded into a NICU ambulance accompanied by nurses, doctors and respiratory therapists. The trip was short, just 2.5 miles to the children’s hospital, but it felt like the longest drive of my life. She was so fragile, her oxygen saturations lingering in the 60’s for extended periods, sedated and intubated. We arrived through the emergency room entrance and followed her in her little isolet through hallway after hallway. I had given birth 4 days prior and felt like I was going to die trying to keep up. But I had to. It was a whirlwind, them checking us in, getting her settled while we tried to eat and kill time. Sitting in her room at midnight, talking with cardiology about surgery, how I may not be able to breastfeed her because of her heart(which is not true in case any other heart mamas are reading this!). At 1 am we finally decided to go home for the night. I felt awful leaving her, but somehow comforted that this was the right place for her to be.

I keep trying to remember what our stay was like. The detailed notes in her chart have given me insight. The day her saturations dropped into the 30’s and she got a blood transfusion, when her heart rate hit 220, how she managed to avoid an exploratory heart catheterization because the MRI they would use wasn’t functioning properly. It’s funny how the human brain works. These aren’t the things I remember when I think of that time. When reading them on paper, I can recall bits and pieces. What I remember is holding her for the first time at 7 days old. Her first bath at 8 days. Offering her very first taste of breastmilk on my finger at 10 days. I remember the shift in my parenting between our first stay and our second. How afraid I was to touch her at first, pick her up, to nurse for fear of detaching some precious wire keeping her alive. The second round I folded the couch into a bed, pulled her crib close and kept her in my arms, in my bed and with me every waking minute. I took charge of her care, learned how to attach the 5 lead EKG(smoke over fire, snow over grass, dirt in the middle), the pulse ox on her toe, the NIRS monitor on her back. I learned to weigh her diapers and that 4 am meant time to weigh the baby. It was a mini crash course in nursing and cardiology.

It was a strange place to be. One I wouldn’t wish on anyone, yet I feel grateful to have met the people I did. Soon we go back for another echo. We park in the same ramp we did for that month. We use the same elevator. Visit the same gift shop. I long to go back and visit her nurses from her stay, yet I feel terrified to set foot beyond those doors. To hear the constant alarms that plague the PICU, to see the teams making their rounds and the nurses hurrying. I still know those sounds even after all this time. I can still hear them perfectly. I can still feel the dim light that hit once the sun went down. I still remember the sound the bathroom door made when you closed it too hard.

We made a slow journey out the door the first time. Once this kid was allowed to eat, she flourished. She grew stronger by the minute. Her journey may have been one step forward and two back but she made it out despite the odds. Moderate to severe is what they categorize her defect as. And you would never know it today. I’ve said it before, but my anticipation and anxiety leading up to these appointments is insane. I get excited. I get nervous. I feel giddy and afraid at the same time. And the task of keeping her still throughout the process becomes all the more daunting as she ages. We will be packing loads of distractions in hopes that she is still long enough for a few clear shots of that little heart.

This weeks photo was her first taste of a s’more. She mostly dug her chubby fingers inside and scooped out the marshmallow. There were so many photos to love this week. These from the brains behind this project. This kid, I mean come on! This photo and it’s heavy sky. This bookstore shot makes me think of future bookshop visits. The depth of field and the light in these remind me of one of my favorite photographers, Sally Mann. I love weeks like this, when it’s difficult to choose a favorite since so many are wonderful.