Sunday, February 14, 2010

Happy Heart Day--To My Miracle Heart Daughter

Happy Valentines Day Becca.

You are our miracle.

Photo: On Doctor Dad's shoulders at the Irish Festival at Harriet Island rocking to the Dropkick Murphys. I title this picture "She ain't heavy, she's my daughter".

February 7 to 14 is Congenital Heart Awareness Week. Click to learn more.

For us, this day is full of memories. Our Becca was born with a severe form of Noonan syndrome and a bad heart. She had severe pulmonary stenosis, (bad pulmonary valve) an atrial septal defect (a huge hole between the chambers), and severe biventricular hypertrophic cardiomyopathy (thickened walls of the heart).

Twenty years ago last week we planned a six month birthday party because the doctors were not certain she would survive to see her first birthday, much less the upcoming cardiac catheritization. We had few memories of being home as she had spent most her life in the NICU.

As we were getting ready to bring Becca home on a 48 hour pass, I told Mary the hospital social worker of my wish for memories. With my request and Mary's help, Make-a-wish granted our simple wish for a few pictures and use of a camcorder to record memories of Becca. Our camera had been stolen from the hospital and we had few pictures and none with her siblings. Make-a-wish did not at that time grant wishes for babies but waited for children to ask for their own wishes, but time was running out for Becca as she was in heart failure. She had been ruled out for a heart transplant and we needed to have a celebration.

I locked myself in my room and created a valentines day dress while the nurses and our family planned a Heart Day celebration for our tiny daughter who changed all our hearts. Almost 100 family members, friends, and medical professionals came to our home and celebrated that evening and Becca knew she was loved.

For me Valentines Day is a day of celebration, our gift of the heart.

Twenty years later... Our miracle daughter is still here.

Postcript: Becca's heart will need yearly monitoring from specialized Adult Cardiology Clinics who know how to treat survivors of Congenital Heart Defects. They are talking that she will need surgery in the forseeable future... and once again we will have to risk her life to save it.

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