The Beginning

July 5th, 2007  Mel wrote, “Today we are beginning what they refer to as ‘Pap trials’ where she tries to breath on her own for short periods of time. She has tremors which they assure us is completely normal although it is rather uncomfortable for a parent to sit and watch. She is slowly coming off of her meds over the next day or so and we hope to be off the vent tomorrow night if she continues on the track were on right now.

We haven’t been able to spend as much time as we would like today because they keep bringing in new patients from the O.R. and we have to be out for the hour that they stabilize them.

Mary Clare is opening her eyes from time to time and yawned once today. She is sleeping most of the time and she has been holding daddy’s finger today.”

……….

The 4th of July will always mark a huge milestone.  It was the the night Mary Clare’s chest was closed and healing began.

When we learned of Mary Clare’s special heart, I knew we had a very long road ahead of us.  It was the fall of 2006 and it wasn’t until the 5th of July 2007, that I allowed myself to breath and accept that my baby girl could actually make it.  Sure, prior to that date, I told myself that she would be fine and HLHS babies survive and thrive every day.  Certainly my baby would be one of those few who do so well throughout infancy and toddler years and grow to be a beautiful little girl.

In all honesty, however, I never allowed myself to really believe it.  I guess it was a defense mechanism for to me face the odds and accept that I may be a mother to an angel baby.  I wasn’t okay with that, but I believed that.

On the night of July 4th, 2007, two days after the most difficult surgery our baby would ever face,  Mel and I strolled through the streets of Charleston, only pulling ourselves away from MUSC after we were asked to step out of PCICU as the surgical team closed Mary Clare’s chest.  Hand in hand, we listened as fireworks exploded around us.  We fantasized about having our family of four together next July 4th. We ducked into a little shop off of King street and stoically shared a pizza.

We never left Mary Clare’s side after that night.  We vowed that one of us would be with her for her every waking moment.  When she awoke the following morning, it was the first time she would have been awake since the night of her birth.

Seeing her open her eyes confirmed what every mother feels the moment they hold their newborn, fierce devotion.  She was mine, even if only for a moment.  This baby of mine, whom I had never held in my arms, was here with me now. I was chosen to be her mother and I loved her with every ounce of my being, how ever long that may be.

I would hold her in my arms for the very first time on July 10, 2007, thirteen excruciating days after her birth.  Images of her intubated and sedated, wrapped in lines, wires and tubes haunt me still.  Tears fill my eyes even now as I remember the familiar sounds and faces of the PCICU.  My beloved PCICU, where our baby spent her first several weeks, where she was baptized, where we sat countless hours praying and hoping for miracles.

July 5th began a time of renewed excitement and uplifting hope.  I began to tell myself that she would survive.  She would thrive and walk and dance and laugh.   She would attend kindergarten and she would grow to learn of her special heart and show others that odds can be beat.  Miracles do happen.

It was the beginning for my spunky little firecracker, my special half-heart little girl.

 

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