Monday, August 07, 2006

Ashlyn Rose Hall was born August 26, 2003. She is my second grandchild, my first granddaughter. My daughter's pregnancy began as normally as any other, and we were thrilled. It was her first pregnancy, and she had been trying to conceive for over a year. Her only concern as she entered the building for her first ultrasound was "Oh, mom, I hope it's a girl". I thought the technician was taking an unusually long time before calling me and Melissa's husband back into the room 'just for fun', but tried not to think negatively.
About a week later, the news came that changed our lives forever. My granddaughter's (yes, Melissa got her girl) fourth chamber of the heart could not be seen, and there was probably a major problem. We were scheduled for a more sophisticated ultrasound to confirm the diagnosis of Hypoplastic Left Heart Syndrome. We were devastated. After the diagnosis was confirmed, we were scheduled to see a Pediatric Cardiologist who for the first time since we'd received this news gave us hope. He told us to first be thankful we were expecting Ashlyn in 2003 since the staged surgeries had come a long way in the last decade toward providing hope for life for HLHS. He then gave us the three options - comfort care (do nothing and Ashlyn would pass away within weeks), the surgeries, or heart transplant. We immediately chose life, and opted for the surgeries to try to salvage her own heart.
Ashlyn had to be delivered at MUSC in Charleston, South Carolina to receive the best care possible. It was nine long weeks before we could bring her home after she was born. She had severe reflux, as many heart babies do, and underwent a Nissen fundoplication and G-tube placement at seven weeks of age. We took the typical "roller coaster ride" that we'd been warned about, and there were only a couple of times that I wondered what Ashlyn would have done if she'd have had a voice in her care. There is nothing harder than to watch a baby you've loved for nine months in the womb have to begin life on a ventilator, fighting literally to live every day, and not knowing what the next day will bring.
Today, Ashlyn has had two of the three surgeries - the Norwood and the Glenn. After both surgeries, she suffered wound infections and after the second one had to go back to the OR for a wound clean out. It was touch-and-go, and we were beside ourselves, but God was good. She now is thriving, and we do not take this for granted. We are amazed that she seems to know what a gift her life is. She delights in everything, and the doctors and nurses tell us that her spunky nature, apparent from birth, gets her through life. At almost three years old, she still weighs only 21.5 pounds but is gaining weight steadily. She is without her G-tube, finally, since this spring. Her heart function, according to her cardiologist, is 'great'. We are blessed beyond words and this child has taught us more about life, love, laughter (and fear, but we don't dwell on that) than we could have imagined three short years ago. We thank God every day for choosing us to be Ashlyn's family. We know we face at least one more surgery. We read that HLHS children's prognosis is UNKNOWN. We pray every day that as CHD awareness increases, better treatments and eventually cures will come. HLHS is still called a "rare defect". I challenge this when I think back to how many babies I can count over the past year who have passed away from this "rare defect". Even one is too many, when it's YOUR baby. Ashlyn and I have a bond that cannot be described; I attribute it to the fact that for nine weeks I rarely left her side, and this continued after we brought her home. A heart baby is a team effort, any family blessed with a heart child will attest to that. Ash's cardiologist tells us that one day she will come to him with questions about activities in high school, and later starting her own family, etc. I pray he's right

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