Eleanor

October 15 is National Pregnancy and Infant Loss Remembrance Day. Everyone around the world is encouraged to light a candle at 7 p.m., as it falls in each time zone. If everyone lights a candle and keeps it burning for one hour, there will be a continuous Wave of Light over the entire world.

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Pregnancy and Infant Loss
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by CASEY JOHNSON

My daughter, Eleanor, was born March 8, 2010, at 26 weeks 3 days gestation, and passed away three short days later.

I had been diagnosed eight weeks prior with oligohydramnios or low amniotic fluid after my anatomical ultrasound. It was recommended that we go to Pittsburgh for further testing and we had another ultrasound done to determine just how much fluid she had.

We were sent home to decide if we wanted to have an amniocentesis to see if we could find a cause for such low fluid. When we returned the following week, there wasn’t enough of a pocket of fluid for them to draw out without possibly hurting the baby.

We were told it would be best to terminate the pregnancy because her lungs would not develop fully. I decided on the advice of my sister-in-law, who was a labor and delivery nurse, to seek a second opinion in DuBois. The doctor there explained to us what was going on more in-depth than Pittsburgh had and though he agreed termination of the pregnancy was what he would recommend, he let us decide how to proceed.

She had a five percent chance of being healthy so we decided to continue with the pregnancy despite recommendations to the contrary. We hoped the odds would work in our favor.

During my 24th week of pregnancy, I was watching television one evening with my then two-year-old. I stood up to get her ready for bed when I saw that my water had fully broken. We knew it had been leaking prior to that but this definitely signaled that I needed to go to the hospital.

I went to DuBois and was admitted to the hospital to be given antibiotics as well as steroids in the hope that despite the lack of fluid, her lungs could develop. I spent nearly two weeks being monitored and on bed rest when I began to bleed the evening of March 7.

The doctor came to see me and though they didn’t feel the baby or I were in any real danger, they let me decide what I wanted to do next. My husband and I determined that I should deliver the baby and my cesarean was set up for the next day.

Eleanor was born at 12:26 p.m. weighing two pounds six ounces and measuring 14 inches long. To my relief, Eleanor cried when she was born so I thought that must mean her lungs were fine. I knew she would have a long road in the NICU but I was confident because my older daughter had spent 28 days after birth in the NICU and was at that time a healthy two-year-old.

Unfortunately, we were not so lucky.

Eleanor had a pretty good first and second day of life even though she was intubated. I was able to go down to visit her while I was still in the hospital recovering from my surgery. She was tiny and had a head full of dark hair. Her little fingers and toes were perfectly formed.

Sometime during the second night, her stats dropped and she coded. The doctor and nurses were able to bring her back. On her third day of life, they had to insert a second chest tube to remove oxygen from outside her lungs. After a not great day, that evening it was determined that there was nothing else that they could do for her.

I had to call my husband and my parents to let them know that she needed to be removed from the ventilator.

My husband rushed the hour and a half to be with me as they removed her life support. My sister-in-law had been with me up to that point and we were able to have her baptized before any support was removed.

Eleanor passed away at 10:55 p.m. on March 11, 2010. I held her during her last moments and we had a wonderful photographer from the volunteer organization Now I Lay Me Down to Sleep to take photos of her.

A week and a half later we had a small graveside funeral for her with the minister who married us. She is buried between my grandmother and my father at a small Sugar Grove cemetery.

Nearly two years after Eleanor’s death, we welcomed our third daughter Lucy. She had a rocky start to life like her sisters but is now a healthy elementary school kid.

After Eleanor’s death, I felt a need to honor her memory so that people know that she was here, even if it was for a short period of time. Six weeks after her death we did our first March of Dimes walk in her memory and in honor of my older daughter. We continued to do the annual walks and I helped a bit with the organization of those walks until they were no longer held in Warren.

Around the time the walks ended here, I began volunteering as the executive director of Caring For Life. CFL is a volunteer-run non-profit that provides support financially to Warren County families with seriously ill children. We help families with children newborn through high school graduation with expenses related to out-of-town appointments such as lodging, gas, parking, and out-of-town meals.

CFL also helps with medical equipment, prescriptions, and medical bills related to the child’s diagnosis that have not been covered by insurance.

These volunteer positions have made me feel that in Eleanor’s memory, I have been able to help other parents who are in a similar situation to what we were in.

Editor’s note: Your Daily Local reached out, through Addie’s Gift Foundation, to families willing to share their stories for National Pregnancy and Infant Loss Remembrance Week (Oct. 9 – 15). All the stories were written by those who shared them and have been edited only for style and spelling/grammar where appropriate. More stories can be found here.