“The love and peace and humbleness that I have from her will never be gone…”
Taryn Tuttle, Trisomy 13, 03/23/2016 to 04/09/2016, Roosevelt, UT
We found out Taryn had Trisomy 13 at around 20weeks gestation. We were told her brain wasn’t forming as it should and she had cleft lip/pallet. An echo showed a vsd and leaky valve. They said her eye sockets were shallow causing the eye to protrude and she wouldn’t be able to close her eyelids all the way. We had suspicions of at least one extra finger. Two days before she was born ultrasound estimated her weight in the 3lb range. Our Dr showed us her growth chart and it showed some growth but not like it had previously and looked that she was loosing weight so at 38wks and 1 day I was induced. We chose to not have any invasive procedures done. If she had problems we would try some oxygen and go from there. During labor instead of her heart rate dropping like a lot do, it would go up. She averaged 120/130 bpm and during contractions it went to 150/160 bpm range. My 5 lb 1 oz 19 in baby girl was born at 1024 pm. She was not breathing and she was very purple. I asked the nurse to give her oxygen. They did the blow by oxygen and listened to her heart. She was at 40 bpm and struggling. They handed her back to me and told us she wouldn’t make it. I had her father take her as I couldn’t hold her like I needed to because they were still finishing up with me after having her. All of sudden she was breathing and turning pink. The nurse listened to her heart again and it was 128 bpm. She continued to do well all on her own. Her nose hadn’t formed right and had no nostrils. She had the cleft lip directly in line with her nose. Right under her nose and directly above where her top teeth would have been, was a perfectly round hole. It was a nostril. She breathed through it. She even sneezed at times. And yes there were boogers too. She sucked her tongue as much as she could. We had them place a feeding tube in so we could give her formula. And they even found pacifiers that were perfect for her and didn’t block her breathing. As we live in a small town, I had to be in Salt Lake City to give birth and have specialists out there. We were released 2 days later and we spent that night in the city and drove home the next day. She made her first and only big road trip at 3 days of age. We developed a routine that was all about her and I never took a moment with her for granite. If I didn’t have to have sleep, I wouldn’t have. I held her for as long and as much as I could as did everyone else. At 17 days of life she started having breathing issues that happen with Trisomy babies. Our Dr came over and told us it wouldn’t be long and he gave her some meds to calm her. Her father and I took turns holding and loving on her and she left us an hour and 45 minutes after she was given the meds. I was holding her and her father listened for her heart beat and didn’t hear it. I continued to just hold my baby girl and patting and rubbing her little bottom like I had been doing. I didn’t want to stop… I couldn’t stop. Our Dr confirmed she was gone and eventually the mortician came to take her. I pretty much told her father he would have to take her from my arms because I couldn’t hand her to him. I couldn’t watch him take our baby girl and place her in the car of the mortician. Every step of this whole process has been harder than the one before. When it was time for me to push to give birth to her I cried because I knew what would happen next. I didn’t expect to be able to bring her home. I prayed and believed that she would live to be born and that she would be born alive. I just didn’t know how long after birth she would live. My God answered my prayers and gave me my baby girl alive. And he let me keep her for 17 beautiful days. 38 wks and 1 day pregnant and 17 days after birth…. my life is forever changed. My sweet butterfly angel baby Taryn Lynnaya lies in her forever bed in the ground at the cemetery. I go visit almost every day, some Saturdays get away from me. I will never see her sweet face and my arms will forever be empty. The love and peace and humbleness that I have from her will never be gone, just some days hurt more than others.