Our son was at Luries Children Hospital the 10 days he was alive. While I was pregnant with him he was being monitored for a heart condition. We were told that after he was born he may need to have heart surgery, so we were sent to the NICU at Luries. On February 2, 2020, about an hour after the Superbowl ended the heart doctor who was monitoring him came to see me in Theodore’s room. He told me he was cleared of any complications with his heart and we can start getting ready to get him released to go home. That night I was told by the nurses to start a feeding schedule with him. I was so excited at the thought of getting my baby home. Being a NICU parent is one of the hardest things to go through. While in the NICU you feel like you can’t really parent your baby. The nurses are always around, there are so many cords and machines constantly beeping. The whole time you feel like you are on eggshells.

I remember feeling so relieved that I would be able to get my baby home so I could actually get to be his mom.

The morning of February 3rd, I woke up to feed Theodore. When I went to get him from his crib I instantly knew something was wrong. He was limp. I called the nurse and she agreed immediately that something seemed off so she called the doctor. Within a few hours Theodore was diagnosed with NEC. This diagnosis was shocking. We went from celebrating the idea of getting to bring our baby home to being told it could be a long road to recovery. The next 4 days were excruciatingly difficult. So much happened that I still can’t talk about.

On February 7th, we were told that Theodore’s chances of survival were 50/50. I remember looking across the table at one of the doctor’s faces and I could see the pain in his eyes. What I did next, I regret with everything in me – I left the hospital to go home. Before I left I went to see Theodore to sing him On Eagles Wings. I told him it was ok for him to “go” and then I left. Why did I leave!?!? I could have had more time with my son. I should have stayed with him so I could hold him all night. At around 2 am on February 8th, we got the call to come down to say goodbye. Our son passed away in my arms at 3:30 am.

The whole time Theodore was in the NICU he wasn’t in clothes. The nurse on staff the night he died told us she was going to clean him up and get him dressed. We sat out in the hallway while she did this. When she was done she came out with a smile on her face and said “he looks so cute in his outfit”. She was right- he did look cute all dressed. I cradled him and told him over and over again how much I loved him. I don’t remember much after that. Somehow we walked out of that room, somehow we walked to the car and drove home.

When I think back on how I got through all of this I imagine myself in a hole. I imagine myself digging myself out with dirt in my nails, tears coming down my face and gasping for air. Sometimes I take myself back to the early days because being in my grief is how I feel close to my son. Little by little I got stronger to move forward. 6 years later I still feel the pain but I now have the strength to live because grief and happiness can co exist. And I am thankful for that every day.