Pieces of Henry

I written before about my struggles with telling Henry's story, about feeling that all the good is buried under the rubble of collapsed dreams and hidden by the horrors of a long, tumultuous hospital stay. When Gal wrote about telling her story a new way, I said, "Hmmm . . . how can I do that?" And then I let go or forgot and my mind went on its way, doing its own thing. I didn't actively try to retell Henry's story, but some pieces of him came back to me and have been sitting with me lately, making space for themselves in a place where mostly dark had taken hold.

When I held Henry, two days after he was born, my whole body relaxed. "This is it. This is what I've been waiting for." And in spite of the beeping monitors and the blinking lights and impending surgery, all was right in my world in that moment. My baby. In my arms. So right. 

We would lie together in the morning, him curled on my chest. He fit perfectly in a way Kathleen never did. I'd make sure his canula was in his nose and that the monitor was in reach so I could turn it off with my toes, and we'd rest together. This is perhaps the deepest peace I have ever known. If I needed proof that snuggling with his mama was good for him, I got it in numbers. When he curled up on my chest, his O2 sats went up and his heart rate went down. And again, I felt my body relax. In these moments I found "normal" in ways I didn't throughout the rest of those days. Or maybe I just stopped looking for normal, taken in fully with the slow, deep breaths and the warm, comfortable weight on my chest. 

When Henry was brought back to Children's they put him in one of the big cribs. He looked so tiny and lost in it, but after we had been there a while, one of the nurses said we were lucky to have the big crib because we could climb right in with him. And so I did. I curled like a comma around my boy, snuggling with my baby again as I hadn't been able to for far too long. 

One day in the hospital, he looked around, looked at me, and smiled. He smiled just for me, that big, bright grin. Many days I have trouble remembering what his smile really looked like, but I can always remember just what it felt like, how I wanted to smile myself, how I stopped sinking and floated up on that smile. 

This is his story as much as the surgery and ambulances and codes and diagnoses. They are not the first pieces of his story I remember. But I want them to be. 

Two Years Ago

Two years ago today, Henry had the hole in his heart fixed.

This is us just before they took him into surgery. I love this picture, though I often think I'm smiling too broadly for a mom whose baby is going under the knife. I was nervous and oh, so hopeful too. We thought this was a new beginning for him.

After a week in the hospital, we had two glorious weeks—Henry's golden age. No oxygen, no impending surgery, a fresh start. It just didn't last. But I didn't know that then. Here in this picture, I think the rocky start is about to end. I think things are about to get easy, "normal." I have no idea what is ahead.

Two years ago, today, Henry had the hole in his heart fixed. Two years ago today, my heart was still whole.

About Henry: Two True Stories

S/he was perfect, just not breathing. These words always catch my attention when I'm reading other people's stories. I always draw up short, realizing that I don't say that about Henry. I don't say he was perfect, instead I lead off with what was wrong.

Maybe it is the need to respond to the space left after you say, "My baby died," to answer the question that statement raises, or my own need to tell about what I've been through, or my inability to capture Henry's spirit in mere words. I tend to rely on an outline of his story, the key events in a neat package for those times when small talk questions lead to the uncomfortable ground of a dead baby.

The Story I Tell
Henry was diagnosed before birth with a small hole in heart (a VSD). We thought it would close up on it's own over time. We learned shortly after he was born that he had Down syndrome and that he had a full AV canal defect. He needed oxygen and was taken away to the NICU at another hospital before I had a chance to hold him and barely got to see him. I couldn't get to him for two days. He spent 9 days in the NICU and came home on oxygen. He had open heart surgery at 3 months. He recovered normally from surgery and came home off oxygen for the first time. We were excited to have him healthy!

Two weeks later he seemed to have a cold. We went to the pediatrician, who immediately put him on oxygen and called an ambulance. As soon as we got to the hospital, Henry was put on a ventilator. Two days later he was transferred back to Children's Hospital in Boston. We were there for three months, during which time he was on and off the ventilator, underwent a lung biopsy and two cardiac catheterizations, and a million other tests. We learned that he had an exceptionally thick cardiac septum, pulmonary hypertension, and another pulmonary issue. He almost died in October from an infection, but pulled through. In December, he was finally discharged on oxygen and a daunting med schedule. He looked good and we were excited to bring him home, but two days later he got sick and ended up in the hospital again. He was put on a ventilator and nitric oxide. He crashed three times; the third time they could not bring him back. I was there, holding his little foot and singing to him when he died.

What I Wish I Would Say
When I first held Henry, I felt utterly right and I relaxed for the first time since the doctor first came into my recovery room with a grave face.

In the early months of Henry’s life I would lie in the early morning resting with him on my chest. It was perhaps the most profound peace I have ever felt.

Henry had a smile that lit up his entire body. So many times that smiled rescued me from fear, exhaustion, and despair.

Henry amazed me: he kept smiling, kept doing new things, remained strong, despite so many days sedated. He was so intent, so determined the way he focused on faces of everyone who held him, the way he worked at getting his hand in his mouth, the way he kicked at his chime toy.

I love Henry with a depth and an intensity I could not imagine before he came—and I miss him with an equal depth and intensity.