Eternity

The Joyful News

November 23, 2012 My husband, Rod and my life changed when we received a blue + sign on a pregnancy test. I don’t think anything could have prepped us for the journey we were starting on. It was a short time but seemed like an eternity.

March 7, 2012. I was counting down to this day from the first visit to the doctor about the baby. It was the day we would receive our ultrasound and find out if we were having a boy or a girl. The moment the image of the baby’s face flashed on the screen, I was in love in a whole new way. I could see everything about this miracle–the jawline, the spine, the eye sockets, nose, fingers and toes–and it all was perfect.

The nurse struggled to find “the parts” because this baby is a FIRECRACKER! Oh my, the baby was all over, flipping and whaling its arms and legs all around, but finally we saw. “It’s a girl” she said nonchalantly and continued rolling over my belly for the next image.

The Traumatic Shock

We continued into an examination room and my doctor walked in more somber that usual. “We are concerned about your baby’s heart. The nurse can’t get a good picture of all four chambers”. I went numb–how could this be? My baby is totally healthy, totally perfect little ball of energy–NO WAY could she have any little thing wrong with her. We left with a bittersweet halo anxious for the next day for a more in-depth ultrasound.

More Information

she was full of life, her little heartbeat was strong and everything about her was perfect. She put on another show, and our hearts grew more in love with her. As the doctor turned off the screen and handed us a strip of pictures she said, “Your baby has a cognitive heart defect called hypoplastic left heart syndrome.” My heart sank. I felt like I just had the wind knocked out of me–how could this be?

Can this be really happening? With tears in my eyes and slipping down my face, I looked back at the doctor as she tried to explain to Rod and me what was happening and what our next steps were. We would have to go to Children’s Hospital to have a heart echo. They will answer all the questions, blah,blah,blah. What other question is there than why is this happening? What will make it go away? Needless to say, we were happy to leave that room and allow the diagnosis to sink in.

Bitter Sweet

July 24, 2012, I held my sweet, beautiful, Vivian, for the first time. Little did I know in 59 short days later, on September 21, I would hold her for my last.

3 days after Vivi was born, a geneticist came into our room and told us Vivi actually had a chromosomal defect called Turner’s Syndrome. The next few days were filled with Care Conferences and Meetings and Tests and  the news we received was crazy–the doctors nor their colleagues from other hospitals had seen a “live” baby with all the complications she had. It was in these moments I was reminded that the medical staff was “practicing medicine”…and as a parent, that’s a hard pill to swallow.

Vivi gave life her all–and in turn, gave me a life I never imagined. Through the smiles and tears, I  wouldn’t trade for the world.

During our 59 day hospital stay,  Rod and I continued to receive endless support from family and friends.  Meals every night, someone to stay with Vivi once a week so we could rejuvenate, and always a shoulder for us to cry on.

The Gift Of Vivians Short Life

The Present: In response to this need, Vivian’s Victory has created a new program, reVIV.  The purpose of reVIV is to provide personalized practical and emotional care for families in order to better serve and walk beside them when their child is diagnosed with a life-limiting or life-altering illness. We focus our care in four key levels of support: Family and Sibling, Hospital, Home and Bereavement. Our method and model are influenced by our relationship with the Rainbow Trust Children’s Charity in the United Kingdom.

It has been seven years since my Vivi has died,  and every year in our Tri-State since there are thousands of families whose child receives a  devastating diagnosis. These families need us… they need YOU.

Thank you for being a part of our journey and enjoy the song Eternity inspirede by Vivian

Full story at https://viviansvictory.org/history/

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