It was a cold Monday in February. We had a family meeting scheduled for 1 pm that day and I knew that we were going to receive devastating news. Adam and I didn’t talk about it, almost as though verbalizing it would somehow make it more of a reality than it already was.
The time had finally come for us to head to a small consult room where Ellie’s team awaited us. Adam and I took a seat in the sofa and looked around the room of familiar faces: Ellie’s nurse, the pediatric palliative care team, the nephrologist, and her NICU attending and fellow. The NICU fellow, Genny, led the meeting with compassion and careful words. My mind replays this meeting on a regular basis and I can vividly hear the words, delivered with kindness yet they felt like daggers in my soul.
It was during that family meeting that we heard the news no parent ever wants to hear: our baby was continuing to decline and there was nothing her teams could do to save her. Her time was running short, even with all the aggressive care she was already receiving. We could continue to provide aggressive care long as possible, but the longer we did so the higher the likelihood of a catastrophic end to her life. We had witnessed a horrifying code blue when she was about 5 days old and the thought of another emergency situation was not something I wanted to experience. We were given a choice to discontinue aggressive care and focus only on her comfort. This was ultimately the path we chose for our girl.
As the team left the room, Adam let out the most gut wrenching cry that I will never forget as long as I live. We held each other tightly on the sofa knowing that our lives were about to take an unbelievable turn. We were literally walking through hell together and I’ve never felt closer to him than I did that day. This whole day felt like an out of body experience – I could see two worn down parents with pain in their faces as they made unfathomable decisions. I could hear the words spoken yet couldn’t believe they were coming from my mouth. This couldn’t be my life unfolding before me.
I immediately called my parents and they made the 2 hour drive to Chapel Hill in record time. Adams parents were already in town and had been keeping Ellie company while we had our meeting. We decided to not bring Audrey Kate to the hospital to meet her sister. Her ventilator was loud and with all the tubes and machines we were worried this would be a traumatic experience and could make her death an even more difficult experience. I question this decision regularly.
I immediately went to Ellie’s room and kissed her head and her cheeks. You see, when a baby is in the NICU you aren’t able to do these things because of infection risk. But because our sweet girl’s time was short, all restrictions were lifted and I smothered her precious little face with all the kisses I had been holding in for days.
Our preacher, David, arrived at the hospital not long afterward and baptized our sweet girl. He anointed her head with oil and to this day I can still smell that sweet fragrance. Afterward her nurse helped us obtain a mold of her foot and a lock of her hair. I would have never thought to ask for these things and now they are some of the most precious keepsakes.
After our parents said their goodbyes to their granddaughter, Adam and I had special time with just the 3 of us. It took a team of about 6 nurses and respiratory therapists to transfer Ellie into her mama’s arms. This was the first time I felt what it was like for grief and joy to coexist. Adam and I took turns holding our daughter and soaking in every moment with her. Meanwhile Ellie’s team worked so hard to keep her comfortable as her little body was failing.
We knew it was time to say goodbye and let Ellie go. She was finally peaceful after a day of suffering. I grabbed Adam’s face and made him promise me that although I was speaking, the decision rested on both of us. He nodded his head in agreement. I walked out of the room to let our nurse know we were ready. The team would be in shortly to turn off the ventilator and extubate our daughter. We knew her death would come quickly after that because her lungs were way too weak to breathe on their own. I couldn’t bear to watch it unfold so I asked them to tap me on the shoulder when they had finished. I closed my eyes and waited.
The room became eerily quiet without the loud pulsating of the ventilator. The NP tapped my shoulder. When I opened my eyes, I was staring at the most beautiful face that was finally free of tape and tubes and was peaceful in her daddy’s arms. For the first time, I could see Ellie’s lips and nose and I could barely catch my breath from her beauty and our pain. Adam laid Ellie in my arms next and it is there where her heart stopped beating and she left her earthly body. I held tightly to her for a long time as her body began to lose its warmth. After placing a stethoscope on her little chest, her NP quietly said “she’s gone.”
Our nurse helped bathe our little one and dressed her in the most beautiful white dress that had been sewn from a wedding gown. It was a dress that was so perfect for an angel. After we said our final goodbyes, we left and allowed her nurse to take her body away. We walked out of the NICU that night empty handed with shattered hearts.
February 12, 2018 will always hold a special place in my heart. It was on this day our family began our journey of child loss and grief. It was the day I first held and kissed my daughter and the day the gates of heaven opened and she was welcomed home. Every day I spend on this earth will be spent missing my girl and anxiously awaiting our eternal reunion.
Ellie Rose, as long as I’m living, my baby you’ll be.
Photo credit: Now I Lay Me Down to Sleep