Tenley Grace's Story

Tenley Grace came to us earlier than expected, and left us too soon. This is her story...

I was six months pregnant when, after a seemingly routine ultrasound, the doctor told us our baby was not growing as she should be, and we needed to check into the hospital right away. We had no idea that the next few days would change our lives forever.

At the hospital they found multiple complications with Tenley. She was a few weeks behind in her growth, there was not enough amniotic fluid, her bowels looked obstructed, and the cord seemed to be restricting blood flow. The doctor gave us different scenarios for possible outcomes- she may not make it to birth, she might make it to be birth and have brain damage and other disabilities, or she might make it to birth but not live long because of her health. I cannot express how overwhelmed we were listening to the doctor that night. We cried...no, wailed, like we never had before. What did I do wrong? How can this be true? Will I ever hold my daughter? Just a day ago we thought that everything was going to be okay, how wrong we were.

We both agreed that we would do everything we could to give our baby her best chance to live. That night I was up most of the night doing tests and they began monitoring her. The doctors said that this would happen until her birth, which could be months or hours away. But I was willing to do what ever it took to give my baby the best chance to survive. Every four hours I was strapped up with cords and monitors so they could track her heart rate. Each time I heard her heart rate drop mine did as well. I spent that night crying, praying, and talking to Tenley in my belly. I told her we could do this, we could fight together to get healthy so that I could one day take her home with me.

The next day brought more doctors, more bad news, more "worse case scenario" warnings, and more tears. Tenley's heart rate began to drop more often, but each time it would recover quickly. At this point I was beginning to accept the fact that I would be spending the holidays being hopeful in the hospital.

Saturday morning the specialist came by to check on us. He looked at her heart rate patterns from the night before and became very concerned. He decided to do an ultrasound to check her movement and heart rate. We found a steady heart rate, but she was curled in the fetal position and did not move for 45 minutes. Her best chance to live was if we did an emergency c-section, and had doctors watching over her around the clock in the NICU. Within minutes I was crowded by nurses and doctors prepping me for surgery. I was crying to them, telling them, "It's too soon, she needs to grow inside of me longer. She isn't ready... I'm not ready." They did their best to calm me and reassure me that everyone would do everything they could to save my baby girl. As they took me out of the room and we headed to the operating room I began to calm down. I realized that freaking out would not help her, me, or my husband. Brendan was with me the whole time, probably freaking out inside, but he stayed so calm and composed.

The surgery went well, and Tenley Grace Spencer was born on November 22, 2014 at 1:58 PM. Miraculously, she was able to breath on her own for more than a minute before they hooked her up to the machines. She surprised everyone by being the smallest baby ever in the NICU at that hospital. We called her our tenacious Tenley as she fought for her life. She was kicking and moving a lot and seemed to be doing so well, despite how shockingly small she was.

The doctor warned us that there is usually a 24 hour honeymoon phase before the complications begin. Despite our hopes that she should prove them wrong, they were right. For 24 hours Tenley did really well, and then the struggles began. They discovered that the bowel obstruction was so bad that her digestive system would not work properly. This meant that they could not feed her. Then she got an infection. She was so tiny and weak that she could not fight it. When we were with her on Sunday night she was no longer kicking and moving, she laid there sick and uncomfortable. It was so awful to see, we desperately wanted to take that pain from her. We felt helpless knowing that there was nothing we could do to rescue her from this. Her oxygen levels were going down rapidly and we needed to make yet another difficult decision, do we leave her hooked up while she lays there sick and dying, or do we hold her in our arms. We didn't know what to do. I felt like if we unplugged her, we were giving up on her and not giving her a chance any more. While taking some time to make the hardest decision of our lives, Tenley was making the decision for us. Even the best machines and doctors could not keep her alive anymore. We looked over at our tiny, frail baby girl and knew she was going to leave us.

Our parents joined us in the NICU to meet her, love her, and pray for her. Then came the best, and worst moment of my life. I held my baby in my arms for the first and last time. During the next 30 minutes we had with her, alive in our arms, we told her stories, I sang "Isn't She Lovely" to her, and we constantly told her how much we loved her. I kissed her face and whispered to her that she could go to heaven to be happy and healthy, and we would see her there one day. Then my baby, my precious Tenley Grace drifted to heaven while in my arms.

I wanted to take her pain...and I did. She is now happy and healthy in heaven, and I am left here with a deep pain that will never leave me.