In honor of both Prematurity Awareness month and of my daughters, I wanted to share the story of their birth and the story of their role in leading me to my current work as the Neonatal Intensive Care Social Worker at the UVM Medical Center.
The night Tod and I drove to Burlington it was the worst winter storm of the season. I had been on bed rest at home for 4 weeks after having a rescue cerclage placed at 19 weeks. We had gotten pregnant after just one try with insemination.
I was told I had an “incompetent cervix” and that was why I was not able to keep my girls inside for the full pregnancy. Sophie and Chloe were born in the early morning hours of December 8, 2003 at just 24 weeks and one day. We had a very brief conversation with the resident about 24 weekers and had to decide what, if anything, we wanted for intervention.
We chose to have everything possible done to keep them alive but clarified with the doctors on a daily basis that we were aware that we would have this conversation on many occasions.
I remember being in my room after the delivery and trying to shake my legs so they would thaw out so I could attempt to get out of bed. I had to see them as soon as possible. Joe, our primary Nurse Practitioner, came to my room to talk with us about their conditions for which I can never thank him enough.
I had an overwhelming need to pray (and I am not a religious person). That’s when we met Pastor Judy. Oh, how we loved her.
I was hanging on the first three days. Praying, thinking, hoping that if we could get past those days my angels would live. I slept with the phone in my hand nightly. I was a robot; how could the rest of the world not stop as mine had? I craved to be with them; to protect them; to learn as much as I could. I still wonder what it was like for Tod. I just don’t know.
I was emotionally drained. Just sapped. No empathy for anyone. I could not muster any sympathy for anyone or anything. It seemed impossible to think straight. My mind was scattered. I would start sentences and completely forget what I was talking about.
I spent most of my time with Chloe. She was sickest. Although, I think there were moments where others might tell you that Sophie was sicker. In my heart I always knew Chloe would die. I just didn’t know when. The only way for me to explain how I felt about her to others was to say “she is me”. That is how connected I was to her. Everything she felt I felt. She was the first to open her eyes. They were blue, like no other blue I have ever seen. We spent a lifetime together in 16 days.
I remember the day I could not stay on Shepardson 5 (our Mother/Baby unit) any longer. I had prepared myself. We moved all of my things to a friend’s house. It was Monday the 22nd. Chloe was getting sicker. It was painful for me, I was heartsick. I knew death was coming soon but Tod was not on the same page as me. We were called twice during the night. Letting us know that she was sicker but still they were able to stabilize her. I called my mom and Tod’s mom to come on Tuesday morning. Tod had to go to work for awhile and then was coming back to be with us.
She began to decompensate around late morning. They thought it may be a pneumothorax (maybe they were even hoping) because they could have possibly fixed that. Unfortunately it was not that. She was just sicker and could not make it any further. Tod was not back yet when they told us it was time to let her go. I remember it as if there was a haze around me. I knew where I was and who was there with me but it’s as if I was somewhere else. I remember crying and wanting to die with her. Not because I wanted to stop living but simply so I could protect her.
All I wanted to do was to hold her. I went in to the unit. I held her until Tod arrived. He had no idea except that his mom had called him and told him to get here as soon as possible. The white curtains were around us. I remember telling her we were so proud of her for staying here as long as she could; that she never had to worry about us; that it was okay to leave for now because we would see her again. I didn’t want anyone who was present to say anything negative to her or around her. She only ever knew love and that was how she must die. She did leave us at 4 p.m. December 23rd. I was holding her as her heart stopped. I can see the individuals coming and going still and am amazed that three hours passed during the course of us saying goodbye.
The remainder of our stay was focused on Sophie. The days of ups and downs were exhausting but we got stronger gradually. Watching her be hand bagged; turn blue; and receive chest compressions was our life for a period of time. She was so strong. I read to her daily. I had a check list of things I needed to accomplish for my sanity each day. They included writing in my journal, reading to Sophie, praying and pumping. It was the only control I had.
I remember when she started to get better specifically because it was when staff began to talk about her in the future tense. That was when I began to breathe again. Things seemed to happen much faster then. She began to gain weight; she was extubated and had her first bath. We only spent one week in Transitions and then went home. By the time home became a part of our vocabulary we were ready to go. Tod and I didn’t care that she would need oxygen, and a monitor. We wanted our baby home.
March 13th Sophie graduated weighing 4 lbs and 13 oz. Sophie and Chloe are our miracles and as sorrow filled as our experience was, it was also the most joyful experience of our lives.
Deana Chase is a Neonatal Intensive Care Social Worker at the UVM Medical Center.
November is Prematurity Awareness Month. Learn more at the March of Dimes: http://www.modimes.org/