Friday, July 1, 2011
The Ride Of Our Lives...
When you have a child, you know your life is going to change! I never expected I would be where I am today...and I wouldn't trade it for anything. I am entering the blogosphere at the encouragement of my sister. She says "our story" may be good for other families navigating the world my husband Jason and I were thrown into two years ago. I know, I know...I'm burying the lead...the opposite of all my journalistic instincts, but this story is different than the news that drags me into work at 3:30 am every morning. This is my life.
On June 15, 2009, Ella made her dramatic entrance into this world. We should have known right away that Ella was going to do things her way...and Jason and I were along for the ride of our lives. Our little Pnut was a few weeks early and tipped the scales at just 5 lbs. She had thick black hair and a tiny, tiny cry. It was love at first sight. She was sent up to the NICU for a closer check and a little help eating. Stressful: yes, but a minor bump in the road. When Ella was one week old, that bump became what seemed like a mountain (at the time).
Ella was diagnosed with a chromosome 18 abnormality. The genetics report lists it as mosaicism for monosomy 18p and monosomy for the short arm of 18 as well as trisomy for the long arm of chromosome 18. I remember the day the genetic councilor coldly came into the room and told us the many grim and hopeless statistics. She also said this was very,very rare...in fact, the doctors couldn't find any other cases containing this type of genetic makeup. I googled chromosome 18 issues (scary stuff). I cried and wondered what the future held. Then I put that report aside, buried it in the mounds of hospital paperwork and focused on my baby and doing everything I could for her. Ella went through every test, scan and screening a newborn could go through, brain ultrasounds, spine X-rays, eco-cardigrams, a check of her kidneys, eyes, ears...the list goes on forever. Everything checked out great!
Today Ella is a precocious two year old who continues to amaze us every day. We have learned so much since her birth. Now my hope is that sharing our experiences will help other families facing similar situations. It hasn't always been easy, but through persistence, we have gotten answers. The grim outlook we were given that day in the NICU is NOT the little girl who makes us laugh every day. Ella does not resemble any of the characteristics of chromosome 18. She is happy, healthy and thriving. We have found what we feel is the best situation for Ella's growth and development. We have a great team of doctors and therapists, and the amazing support of family and friends. Now I want to record our journey....for the love of Pnut!