MOSAIC MOMENTS

Every now and then I get the opportunity to hear a story that puts me in total awe. I, myself have dealt with many trials in my life, especially where Tim is concerned. So, when I read Suzanne’s story of her wonderful family and how Zoe conquered every single obstacle that has come her way from the moment she was conceived, I was inspired! 

Then, out of curiosity, I looked up the meaning of Zoe. I have always loved the name and it always puts a smile on my face, but I never knew what it meant!

Zoe means LIFE.

Wow!

When you read Zoe’s story, you will see how her parents could not have picked a better name for her!

Zoe Austin Wingard was born on July 16, 2007 (a month early). She’s been a fighter since she was conceived. With 2 nurses, 1 doctor, my husband, (Tripp) and I in one small sterile room, we began the invitro process. We were extremely excited and terrified at the same time (a combo feeling that we have felt several times since then). After 4 years of failed procedures and no indications of what was wrong through a multitude of tests, we were ready for something to work! Zoe did not disappoint me! Our journey with her has been one of firsts for doctors, fear of the unknown, extreme joy beyond belief and contagious laughter- to say the least.

From day one, Zoe has shown me incredible resilience. She survived several scary events during my pregnancy. A week after the eggs were implanted, I hemorrhaged from one of the retrieval sites (something the doctors had never seen before); at 18 weeks, an 18 wheeler ran me off the interstate while I traveled to work; at 22 weeks, I went into premature labor and was on bed rest with medicine until she came at 36 weeks. All through the pregnancy, I had several Ultrasounds since I was considered high risk however, none of them showed us any sign for concern. When the nurses offered to do the test to check on Spina bifida and Ds, I questioned it. I was told that there could be a false positive for the Down syndrome so I chose not to get the test. I figured that I wasn’t gonna terminate the pregnancy so why put myself through a false positive and worry during the rest of the pregnancy.

Being our first pregnancy, we decided not to find out the sex of the baby. I can remember imagining the future of our little boy verses our little girl. The day she arrived, she came fast and furious and there again, I was filled with excitement and terror at the same time! Several hours went by before the pediatric doctor came into the room and awkwardly told us that they were sending her chromosomes off to be tested because they suspected Down syndrome after they found a heart murmur and other signs, like a floppy tone and a gap between her toes. I was blown away. Suddenly, what was supposed to be the happiest day turned into disbelief and extreme sadness. Looking back, I think that is the one thing I hated most. That my joy for this new baby girl was taken from me and I was left with uncontrollable tears from both me and my husband. I really wish that I knew then how much happiness that we were going to have with Zoe. I instead feared how our family was going to react and if my husband was going to look at her differently. I remember asking him if this changed his mind about how he loved her. He told me that he just felt so sad for her and that he didn’t want her to go through all the pain. Little did we know that this girl would have a life of happiness and far more love for others than most.

The second day, the doctors informed us that Zoe had a complete AV canal defect in her heart (a large hole which allows the blood to mix) and would need open heart surgery around 6 months. Another shock. The rest of that week was extremely hard but our friends and family were all there to support us and reassured me that no matter what, Zoe was their new baby girl and they already had an unbreakable bond with her.

When we went to the Cardiologist, he explained that only 1/3 of children with Down syndrome have the heart defect and actually the majority of those with this heart defect do not have Down syndrome. However, the children with Down syndrome actually do better during surgery and recovery. That was the first time I actually hoped that the Down syndrome diagnosis was correct.

Imagine that…

At 5 weeks, we got the chromosome reports confirming the Down syndrome, however we were not aware that she actually had mosaic Down syndrome. We were just getting used to the idea of this new life and then we had another scary event happen. At 7 weeks, she had to go back into the hospital for 21 days because of bacterial meningitis. She had contracted Group B Strep from the birth and the hole in her heart sent it straight to the brain. She fought incredibly hard and luckily we caught it early so there was no brain damage.

We went to the Downs clinic in December and that is where we learned about the mosaic Down syndrome. I had never heard of it before and found myself attacking the Internet in search of any information- which led me to IMDSA. Since then, I have had to educate so many friends, family, professionals, and acquaintances. It has become a new passion for me.

On Jan 11th ‘08, Zoe had open-heart surgery at MUSC in Charleston to repair the AV canal. The surgery was successful. She had both walls closed and both sets of valves reconstructed. There were a couple of minor complications during recovery, like contracting a stomach virus and producing Kile, but once again, my fighter was resilient. We were back home in 3 weeks and she had never looked back! Her weight gain was incredible (almost doubling her birth weight at 1 year- after only gaining a pound a month for the first 6 months.) She has met her milestones (with lots of early intervention) at the end of the “normal range” and is continuing to surprise all the doctors. On Oct 16, she will be 15 months old. We love this age! She says MaMa, DaDa well and signs 4 words. She is pulling up easily and trying to furniture walk / taking steps with support. She waves hello and bye bye and can even feed herself with a fork.

But the thing I love the most is her laughter! I can’t get enough of it. Already at just under 15 months, she has inspired and amazed so many people. I had a stranger once tell me that there was something magnetic about her. That makes me smile. I know that there are great things in store for Zoe and her daddy and I can’t wait to experience them with her.

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