Turning grief into an opportunity to help others

Our lives were forever changed when our twin girls were born at 27 weeks on July 19, 2015. We struggled with infertility and were overjoyed to find out we were expecting twins, but were also nervous at the same time. I had a relatively smooth pregnancy until my water broke without warning one night.

My husband and I were both truly terrified when we arrived at the Pavilion for Women, but the doctors and nurses were all so calm and comforting and took their time answering all our questions. The girls were born by emergency C-section 48 hours later. Both Anna and Ella were a mere 1 lb. 15 oz. and were the tiniest babies I had ever seen. We were amazed by how many people were in the operating room ready and waiting to help our girls. We are forever grateful for the neonatology team for working so hard to stabilize both girls. Once Anna and Ella were stable enough, they brought them to the recovery room where we were able to take our first pictures with them and touch their tiny hands before they were both transported to the neonatal intensive care unit (NICU) at the Pavilion. We were told to expect them to remain in the NICU for the next 13 weeks, until their due date. We knew we had a long road ahead of us, but we were hopeful we would be able to bring them both home.

I am a pediatric nurse practitioner so I made it my full time job to learn every aspect of the girls’ care. I made sure I was at the hospital every day when the doctors rounded to discuss the treatment plans for each girl. I really appreciated how the doctors included me and my husband in rounds, and listened to our questions and concerns. Over the next several weeks, we experienced the many ups and downs of life in the NICU. We were incredibly thankful that Anna immediately took off and progressed through the many milestones she needed to reach to be able to come home with us. Ella, however, was the one who always seemed to struggle. The doctors discovered she had a hole in her heart that needed repaired when she was 4 weeks old. She underwent the heart surgery to close the hole and we thought she would finally have the chance to catch up with her sister. Our hearts were shattered when she developed an infection when she was 5 weeks old. She fought hard for two long weeks, but the infection was too much for her little body to withstand. She passed away in the arms of her Daddy when she was 7 weeks old.

The doctors and nurses were amazing over those last few hours with Ella. The nurses helped us create hand and foot molds and took pictures of our final moments with her. I don’t think they’ll ever know how much I will cherish those memories for the rest of my life. As thankful as we are for the care we received when Ella passed, it also made us realize the need for a more private environment for parents to be able to say goodbye to their babies. We had to say goodbye to Ella in an isolation room while she was still hooked up to monitors and machines. The room had open windows so the doctors and nurses were able to see in and could come in and out of the room freely. As a result, we did not feel we had much privacy and felt rushed when saying goodbye. So when the opportunity presented itself to raise money to open a bereavement room for the Pavilion NICU in Ella’s memory, we felt like this was our opportunity to improve bereavement care for other grieving families.

A bereavement room is meant to provide a grieving family with the privacy they need during those final moments with their baby. Our room is going to be designed like a nursery with a crib, comfortable seating for the family and a baby bath tub so families can bathe their babies. It is our prayer that this room will allow families to take as much time as they need to say goodbye to their baby. They can have pictures taken with their baby, bathe their baby, read and sing to their baby. It is so important for grieving parents to have the opportunity to create these memories with their baby. When we lost Ella, I was overwhelmed because I didn’t know how I was supposed to condense everything I wanted to say to her over a lifetime into a matter of minutes. As a bereaved parent, I’ve learned the best gift you can give another grieving family is the gift of more time with their baby. Words can’t express how much I wish a room like this was available when we lost Ella. It would have been such a blessing to spend time with her in a room designed like a nursery, especially since we would never be able to bring her home to a nursery of her own. We are incredibly grateful we have been able to raise the funds for this room thanks to the generosity of our friends, family, co-workers and our community. Construction on this room began in May, and it is scheduled to open for patient use by the beginning of June 2017. We hope this room will bring peace and comfort to other bereaved families for many years to come.

We will never be able to fully express how grateful we are for the doctors and nurses at the Pavilion and for the amazing care they provided to both our girls. We feel so very blessed to live in a city with such advanced medical care. Without it, we realize we could have lost both our girls. Anna spent 83 days in the NICU but finally came home with us in October 2015. She is now 22 months old and is a very strong-willed, energetic, feisty little girl. We believe she lives life to the fullest because she is living for two now.