Tuesday, August 15, 2006
Ava's Garden grew when it shouldn't. All the beautiful plants in my little plot are volunteers. They popped out of the ground and flourished, even though nothing was planted or nurtured. They are lush, blooming, and just won't give up! To me this is perfect symbolism for our beautiful daughter, granddaughter, and niece.
Ava Mae was born December 21, 2005, after a difficult pregnancy. Her mommy, Laura, whom I love like my own, miscarried TWICE in her first trimester. Ava's siblings didn't make it, but our precious girl held on with all she had. She was born at 38 weeks--small, initally unresponsive, and with severe feeding issues. I have never felt so overcome with emotion as I did the evening she was born. I stood at the nursery window and just sobbed. It's true what "they" say: Being a grandparent is so much better than being a parent!
I knew something was "odd" the next day when I visited the hospital. Ava's philtrum was exceptionally long. I dismissed it, thinking that it was just a family trait or something. Several weeks later I took Ava to her pediatrician appointment. At that visit the doctor sat down, looked me in the eyes, and said, "I know you have concerns and so do I. " My mind was reeling when he started on this litany of signs and symptoms. He mentioned her long philtrum, low-set ears, feeding issues, prolapsing rectum, abdominal pain, heart murmur, and on and on. His suspicion was that she had a genetic defect, most likely cystic fibrosis. I can't even find the words to express the devastation I was feeling. And the worst part was that I had to go home and tell Laura and her family what the doctor said. And so it began.
Since then Ava has had a positive FISH test for WS, three surgeries to repair her prolapsed rectum, long hospital stays for IV antibiotics, visits with a cardiologist, geneticist, GI surgeon, GI specialist, endocrinologist, and ophthalmologist; and therapy with Early On of Michigan for feeding issues and developmental delays. Whew! Our baby is high-maintenance! But considering the hell she has been through, she is doing remarkably well. She has a smile that lights up her whole face!
I hope to post regularly on this site so that our friends, relatives, and fellow WS families can chat and learn from each other. I also think that journaling is darn good therapy for the writer!