I learned shortly after returning home that I was indeed pregnant. We were thrilled and humbled that God had chosen for us to have another child.
The pregnancy was fairly typcial for the first few weeks. Soon, though, I began truly feeling like something was wrong. I have to believe this was simply mother's instinct.
My OB agreed to having me come in for an early ultrasound at 11 weeks. We saw the heartbeat immediately and I felt a few seconds of relief. However, I could see by the look on my OB's face that something was wrong. He detected an omphalocele (abdominal wall defect where some of the internal organs are protruding outside of the body in an enclosed sac) and sent me for a diagnostic ultrasound immediately.
Two days later we met with the Genetic Counselor where we received a crash course in chromosomal abnormalities. We were given the opportunity to have CVS testing that day, and we chose to do it. We felt it would be best to be prepared for our child's condition.
Ten days later we learned our daughter had full Trisomy 18. We named her right away - Marie Cooper - so we could bond with her, talk about her by name, and pray for her by name.
As time went on, I became more confident on how I would approach the pregnancy. I received some information from Hospice and was able to begin planning and preparing for Marie's birth and death. I purchased burial clothes for Marie (preemie sized that ended up still being way too big!). I purchased cemetery plots. I researched birth plans. I began planning her funeral. A friend of mine described this as "nesting" for her. I was preparing for Marie's needs, as I would prepare for any child. Her needs were just very different from a healthy child's.
It was extremely difficult living day-to-day, wondering each morning, "Will this be the day she dies?" It became very difficult to care for my home and my kids as the depression took over. A dear friend helped coordinate help around the house with cleaning, meals, grocery shopping, etc.
I did, however, work very hard to enjoy the life of Marie while she was in my womb. I loved feeling her movements and I loved listening to her heartbeat. I cherished each day she was with me. Many times I would say, "I wish I could stay pregnant forever", to which my husband would groan! But I was comforted to have her life within me, and I knew that her birth would lead to her inevitable death. I splurged and had a professional photo of my pregnant belly done. I had it done in black and white and it is by far one of my most cherished items.
I began attending a Miscarriage and Newborn Loss Support Group when I was 20 weeks pregnant. I was already grieving, even though she hadn't died yet. And I thought it would be good to develop a connection and a relationship with the group for when I became an "official" member. I was welcomed and supported by the group, and still attend the monthly meetings.
I saw my OB about every two weeks. He did an ultrasound just about every time. It was such a comfort to see her body moving and to see her heart beating. Every time I'd leave the office, I'd call my husband on my cell phone as I walked down the hallway and say, "She's still alive!!!"
Marie beat the odds and I carried her 38 weeks. I'd begun dilating and having early signs of labor. On September 16, 2002 Marie was born. I kept my eyes closed at first and kept asking, "Is she alive?" I heard voices reassuring me, "She's alive!" She cried a sweet cry, like a kitten or a lamb. Many family members were in the hallway waiting and we invited them in just minutes later. My father-in-law, a pastor, baptized her. We all spent time with her - it was amazingly peaceful.
She was beautiful. Her omphalocele was very large, the largest anyone around here had ever seen. The physicians treated it and wrapped it. Her hands were clenched and fingers overlapped. When I look at photos of her hands now, I smile. They were very characteristic of Trisomy 18, but they were unique to her. They made her special. One of her eyes never opened completely. A small piece of skin had never separated completely. I told my kids she was winking at us. This is another special memory.
After a couple hours she appeared to be slowing down. My husband asked that we be alone with her. We then took turns holding her, watching her breathe, praying with her, expecting each breath to be her last one. The nurse stayed with us and periodically checked her heartrate and breathing pattern. We sat there for an hour while she very peacefully went from our arms to the arms of Jesus. It was very peaceful, holy and sacred.
After she died, I dressed her in her special clothes. The nurse was wonderful and helped me dress her, take photos, and collect memorabilia. I cut a lock of her hair and now have it in a locket with her photo.
We had her funeral three days later. It was a beautiful service. I was so glad I'd planned so many details in advance. I felt so very proud of my daughter that day. Many people came and celebrated her life with us.
We recently celebrated her first anniversary in Heaven with Jesus. About 35 people came to her grave. I read something I'd written for the day, and a couple people spoke about Marie. We released pink and lavender balloons with postcards attached and heard back from three people who retrieved the balloons - one even made it to Canada!
I miss Marie terribly. Many times I have an odd sensation that someone is missing from our family. Of course it only takes a split second to recognize who is missing and oftentimes the grief will hit me again. However, Marie changed my life in many ways, and I know she will continue to touch me.
First Anniversary
in Heaven
Celebration of Life