Parents: Shelby & Tino
Hometown: Sylvania, Ohio
Diagnosed after birth, lived 5 months
Trinity Nicole’s Story
“She came out screaming, and I remember them saying she was a girl. I was so happy. I finally had a girl. Tino kept telling me she looked like him; she had dark hair and lots of it and she had dark skin. They let me see her for a second.
I remember telling Tino she looked healthy and I thought for a second everything could be okay.” Her oldest child, Rocky, had been born with Down’s syndrome, and Shelby had felt throughout this pregnancy that, once again, something wasn’t right. Before Trinity’s birth, doctors had suspected some heart problems and a misshapen head, but other than that, all they knew was that she was breech, and so that’s how Shelby ended up having a c-section.
But her initial picture had been wrong. Trinity wasn’t healthy and she was very tiny: 4lbs 6oz and 16inches long, and so they quickly took her to the NICU. Shelby didn’t see her for hours. When they finally got to visit her, Shelby kept noticing that she looked different. “I remember pointing things out to her dad, and he kept telling me to leave her alone. She had clenched fists, little elf ears, a very small mouth, rocker bottom feet, and also one webbed hand. The doctors told us she had multiple heart problems. They did cat scans, echoes and poked her so many times the poor thing had bruises all over her feet and hands.”
Two days later, on October 12th, they received the preliminary results of the testing. Shelby walked into the special care nursery just in time to hear the doctor say, “Get the parents of this baby; I need to talk to them”. They ended up taking Tino and Shelby to a little room, and told them they were almost positive that she had trisomy 18, and that they didn’t expect her to live very long. “I remember thinking the doctors seemed so cold; they acted like they weren’t talking about a human life, they didn’t even care,” Shelby recalls. She was in shock. “I remember the walk back to my room seemed a mile long. I was collapsing and screaming; Tino was almost carrying me. My close family was in my room and heard me coming so by the time I got in there they were all crying.
That same night we had her baptized; the nurses dressed her in a white hat and sweater, which had booties to match. Having Trinity baptized before she died was very important. It was very emotional: at that point I felt like we were handing her back to the Lord. The next morning a very close nurse friend came in and I signed a DNR. That was by far one of the hardest things I have ever done. I felt at times I was allowing them to let her die and I felt terrible.”
Her big brother Rocky came up to see her a couple days after she was born and he seemed excited, calling her “Sissy”. He didn’t appear to think there was anything wrong with her, and they never sat him down and explained it, feeling it would be too hard for him to understand.
After about five days in the hospital, Trinity proved herself to be a fighter, and Tino and Shelby decided they were going to take her home. Shelby thought, “How am I going to do this?” She felt overwhelmed with the task of caring for her, and she was still in shock herself. But she realized it was what was best for Trinity. Before they could take her home they had to learn to insert a feeding tube and learn how to feed her. The first time she did it the tube wouldn’t go down. Trinity was screaming, and Shelby felt awful about it. But somehow they learned. The hospital connected them with hospice and finally they were on their way home. Shelby remembers, “We had oxygen, NG tubes, syringes. I had a white Tupperware bin with three drawers filled with supplies for her. Hospice came out daily; they would listen to her heart and some days she would be so bad we would think she wasn’t going to make it through the night. Then there were times she would do so well for weeks that we would forget that she was sick. Tino took three weeks off from work; my mom and his mom would buy our groceries and we kept getting cards everyday with money, which paid our bills and got us by. We were cabin bound for months; we would try and go out just for a while, but never took Trinity to the store, only took her out when she had to go to the doctors.”
Shelby’s most special memories are of Trinity smiling and cooing. The hospice nurse that would come over couldn’t believe she was smiling. She told them that when she went to her staff meeting later that day everyone was clapping for Trinity because she did something that they thought she wouldn’t. “We were all so proud of her.” They also got the wonderful blessing of spending Christmas with Trinity, and she was there to help them welcome in the New Year as well.
Shelby sang to Trinity frequently; one of her favorites was, “You are my sunshine”. As time passed, Trinity’s appetite waned; she was only eating one ounce of breast milk every three hours. She was starting to have seizures and she ran fevers daily. Shelby recalls, “The week she died she looked so sad. I knew by the look in her big blue eyes that she was leaving soon. The day she passed she was actually pushing the oxygen away from her face, it was like she was saying, “no more”, so I stopped. About two hours later she died in my arms surrounded by people who loved her. That was the saddest day of my life.”
That weekend Rocky was at his Mimi’s house. They decided they wanted him to come home to be with Trinity and the family, but before he got home she was already gone. “He didn’t even notice, he did come up and smell her hair like he always did. Now I look back and I know he knew something wasn’t right. A couple of weeks after she passed he was in my bedroom and said “Baby” and waved bye towards the ceiling. He had never done that before and hasn’t since.”
They played Enya’s “Only Time” and Celine Dion’s “Fly” at her funeral. “The night of Trinity’s showing I wrote her a poem and I read it the next day at her funeral. It was so healing for me. I knew I had to show her that I was so grateful for all she taught us and that I was ready to let her spirit be free. I didn’t want to slow her down at all, I wanted her to know I would be okay.”
Shelby is so thankful that God blessed them in such a big way. “I can honestly look back and say we were blessed in more ways then we will ever know.” Trinity’s wonderful life was celebrated on her first birthday when they had a party for her at the cemetery. They handed out programs with poems and lit a candle in her memory. They released a white dove and three dozen balloons and had a cake with big white fluffy clouds on it that said “Always Remembered.” They also had a Suzyzoo giraffe on it because she was buried with one. Then for her first angel day they put a memoriam in their local newspaper with her picture; it read “Fly,Fly little wings” and had a short note to her.
Shelby writes, “Here I am almost two years later; I feel so blessed to have known her. She taught us so much. I don’t regret anything. I’m a much better person for knowing her. There are times that it’s still hard, but I just think she is with the Lord and who better to be with? We still go out to her grave once a week and put a dozen roses were she lies. She will always be missed and loved.”