Taylor Jordan Soucie
May 26, 1999 to December 26, 1999
The day that our daughter Taylor was born was one of happiest days of our lives, along with the births of our two other children. After months of complications (unexplained bleeding, preterm labor )she was finally here. She came into this world with such an unhappy look. She didn’t really even cry. Unlike my other children they only let me hold Taylor for a minute and then they wisked her away to the NICU. She had no breathing problems or any other major problems, at least that’s how it appeared to me. I woke up bright and early the next morning so i could go see my baby I had only seen just briefly. I met my husband at the elevator and we went in together.I had never been in the NICU and It was hard to breathe seeing these helpless babies. Taylor was by far one of the biggest babies there even weighing only 4-7.
She was hooked up to monitors but still strong enough to breathe on her own. As we sat there and stroked are daughter in her bed we turned to see about six doctors entering the room. The moment they told a nurse that they were here for "The Soucie baby " my heart started pounding. The neuro surgeon was the first to speak. He told us that they had run lots of tests through the night one being the CAT scan. He began by drawing a picture of what Taylor’s brain looked like and explained that she had a brain condition called Lissencephaly.They told us that she would be a vegetable her whole life making only developments of that of a three month old. The worst part; she would most likely die by age two. Die? She was just born. I didn't understand. The following day they discovered that Taylor also had some heart abnormalities.
The end of that week they called for us to come pick up our baby she was being discharged. I was terrified. They released her on hospice. After about two months she was taken off of hospice because she was doing great and thriving. That only lasted a short while. When she turned five months old I started noticing a big change for the worse. She was crying constantly, I couldn't get her to eat and the doctors all said she was fine. They were wrong. Mothers intuition made me fight harder for someone to help my baby who I knew was suffering all along. Finally we were sent to a cardiologist who saw something seriously wrong with Taylor the second he saw her. He ordered an ultrasound of her heart immediately. Taylor did in fact have heart trouble a problem that they thought had fixed itself a few months before.
The doctor sent us straight to the hospital so Taylor could get her life or death surgery. Taylor did well during the surgery and seemed she would be all right. A couple days later they took her in for her second heart surgery (Her chest tube was losing too much fluid). It never helped either. During the two months she was in the hospital Taylor endured so much and even with her huge disadvantage still fought so hard.
The day after Christmas we got a call telling us to get to the hospital Taylor wasn't doing well. I knew right then that this was to be my last day with her on earth. When I got to the hospital she looked terrible. She was a musky, grey color and you could see her fighting to breathe. The head nurse came over to me and said there was no more they could do, It was time to let go.
They gave us the option of putting her on life support. I turned it down. Taylor had been sick for so long and she always fought, that day the fire in her was dying she was done fighting.
I held her for the next several hours watching and listening to the monitors getting softer and slower. At around 7:30 that evening the heart monitor read zero and all the life in her tiny body was gone. They pronounced her dead shortly thereafter. I ripped all the monitors off of her. I danced with her, I changed her, I just squeezed so tight. I then laid her on the bed that she called home for most her life. I kissed her forehead then turned and walked away. I felt dead too. Although my death was not to a happy beautiful place mine~ was to a hell.
Its been seven months since she left us, and I miss her more with each day. God sent me an angel. He blessed everyone who knew her. She was so inspirational, She still is. I miss my baby girl and the only comfort for me is knowing we will meet again someday.
"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen."
-Elizabeth Kubler-Ross
