Heart Day

Two years ago, I handed my daughter over for open heart surgery. We choose to celebrate this day because while her birthday is the day she left my body, today is the day she started to live. I’ve had people raise an eyebrow at this choice to celebrate, and it recently dawned on me that I have never fully shared what her healthy heart meant for us at the time, and what it means now. (other than the obvious: she is alive)

I just went back and re-read some of the posts from that time. I never come right out and talk about how scared I was, but I think it’s pretty obvious from the things that I chose to talk about in the weeks leading up to her surgery.

Over the last two years I’ve come to realize the trauma of that day, and of the months leading up to it. At the time, I couldn’t let that trauma in. I couldn’t accept how heavily it weighed on me, and I was definitely still in “paint the rosy picture” mode.

Those first four months of Rowenna’s life were absolute hell. I never had more than 2-3 hours sleep at a time. I was pumping every 3 hours, and Rowenna had tube feedings and medications. There is a strange, surreal feeling that comes when pushing breastmilk through a tube in your child’s nose; doing it while she’s asleep and not even in your arms (because you are so numb and tired from it all that you can’t trust yourself to safely hold her) is some kind of heart break.

I felt barely alive during those four months. Just two weeks after we brought her home from the NICU, she ended up in the hospital again for failure to gain weight and a respiratory infection. I had no idea she was in such dire straights – we were sent directly to the hospital from the doctor’s office after what should have been a routine 1 month check-up. It took over a year and a half to stop packing an emergency bag for every single trip to the pediatrician, and I’m still not sure I completely trust my gut when it comes to medical situations.

I slapped on a smile and went about life that summer. Looking back on those pictures now, I have to wonder if anyone believed a single one of those smiles. It was all such a tangle of emotions. I was so deeply in love with my child but so afraid she would die, and so afraid to completely accept her as mine because I was convinced she was going to leave me. She was so beautiful to me, but I feared so much that no one else saw that beauty. I was afraid to give voice to my fears about her health and about Down syndrome. I was afraid admitting my fears would make others’ erroneous beliefs about her diagnosis somehow true.

There was a parade of therapists and specialists all telling us what to do, and not a lot of asking us what we wanted for our child. Frankly, if they had asked, I’m not sure we would have had an answer at that time. We would watch her lie on the floor, surrounded by toys, pale and listless, her chest retracting as she breathed. Our goal? For her to survive. Our therapists were enthusiastic and chirped a lot of praise, but in those months, it fell on unhearing ears and heavy hearts.

I would hold her as she napped, and pray with all my strength that if she had to go, would God please take her while I was holding her so she knew right to the end how much she was loved.

We ran ourselves ragged trying to fit a lifetime of experiences into four short months, trying to show her the world before what we truly thought would be her last day. We barely slept, and barely ate. We didn’t dare sit still for fear of a crushing sadness that would wash over us the second we stopped to give our situation any real thought.

I should point out that we understood the nature of her heart defect, and we knew the success rate of the repair. But logic had no hold in our house that summer and we were running almost entirely on raw instinct. I’m not used to being run so entirely by my emotions and instinct, and that only added to the confusion of the time.

And then that day came. It’s a small blessing that we had barely any warning – less than two weeks. I remember the night before wanting her to sleep with us in bed, to hear her breathe, to feel her warmth. Ever practical, we had her sleep in a crib (an unfamiliar one at that because we were at Ronald McDonald House) so we could have a little extra rest before what we knew would be a grueling day. Everyone told us to be sure to care for ourselves, but in retrospect that seems so selfish when you think there is such limited time with your child.

I had a very special outfit for her to wear to the hospital, even though I knew she’d wear it no more than an hour. We took a hundred pictures – her tiny hand, her swirl of hair, her button nose. Nurses who had seen a thousand terrified-yet-numb parents gently led us through the pre-op procedure. They let us change her into her surgical gown and change her diaper one last time. We got to ask our final questions, and then finally, in the cold and dark of the early morning, we watched our girl be carried down the hall and away from us.

I distinctly remember the feeling that she was the sweetest baby in the world because she didn’t even fuss. She left her momma with a sleepy smile.

I think I died a thousand deaths that day. My heart stopped every time the nurse came for her hourly update. It wasn’t until it was completely done that I could believe she was coming back to us.

For an end to all that, we celebrate. For surviving all that, we celebrate. For freedom from all that, we celebrate. For a girl who chatters and toddles and laughs today, we celebrate.