Memories from the ICU: Emanuela's First Easter

Easter 2018 arrived just as we hit two and a half months in the hospital. It was April 1st. Long before that, I had crafted a plan that our baby girl would be home by Easter. Instead, we found ourselves in the Intensive Care Unit (ICU). She had been rushed there a few days earlier due to heart failure. My plan, firmly entrenched in my mind, as if pure determination will see it through - failed. Her heart had its own agenda.

"Do you remember Ema's first Easter," I asked her dad last night.
"We were in the hospital," he replied.

I knew that much. What I was hoping for was whether he remembered any specific details about it. Because I didn't. Sure, it was late; it was that moment between being awake and asleep when thoughts and ideas seep in without invitation. I just couldn't shake off the need to recall something, anything. Were there flowers around? We certainly didn't dye any eggs, but did someone else do it for us? Did we visit family for lunch? Did we even register it was Easter, if not within the hospital, then at least beyond its walls that were constricting our souls?

Coming from a family with deeply rooted Catholic traditions, Easter holds immense significance. So, I consulted the diary.

She's extubated! But the nasal fork is still on - 21% O2, 8l/min. Her face is all red, covered in a rash. She is still a bit swollen. She is handling the rehabilitation of her lungs well. In the afternoon, she was already nicely awake.
It's Easter today! The plan was for you to be home... Man plans, God directs.

That's all.

And there are only two pictures from that day. Heartbreaking pictures. The kind that makes you contemplate suffering, purpose, and the (un)fairness of it all.

There were no daffodils or tulips decorating the hallways. I don't recall any cut-out bunnies affixed to the walls or colourful eggs. This isn't to say they weren't there in reality, as hospitals usually make efforts to create a pleasant environment. But my mind was elsewhere; my puffy eyes fixed on a screen displaying numbers, bearing witness to whether my baby's life was slipping away or if she was returning to us.

Three days earlier, she appeared pale to me, as my diary reminds me. She didn't sleep after physiotherapy, which usually exhausted her. She gagged after taking a few sips of milk. And I now remember that day vividly. I know exactly how it felt. I recall the surge of fight-or-flight response, triggering the fighting instinct, as if I could somehow impact what was about to happen. I remember the fear.

Moments later, she appeared to be choking on milk. For a second, her face turned a dark purple. And then, as if nothing had happened. I stood there, dumbfounded, knowing only that something had just happened, with no one around to witness it and explain it. Since it was time for her nap and she was nowhere near falling asleep, I carefully gathered all the tubes and wires she was connected to and cradled her against my chest. By then, I had learned to manage everything without the assistance of a nurse. They were usually busy anyway, so I tried to learn as soon as possible to do as much as possible on my own. This gave me a sense of mothering and self-sufficiency in caring for my baby. Additionally, by handling tasks myself, I could fully focus on my little girl without distracting small talk with the staff. We would steal a moment for ourselves - for me to whisper to her while lifting her, to meet her gaze, to reassure her that she would be okay and to hang in there; that we would soon be able to go home...

And then everything changed. Again. Her eyes drifted inward, then rolled upwards and back, losing all control; she began moaning, emitting sounds I had never heard before. Soon, her skin took on a shade between deep dark blue and purple, and all the alarms on the monitor she was connected to blared. This time, there was no turning back. When the nurse on duty saw what was happening, she turned pale. The doctors rushed in, and as more and more people gathered around Ema's bed, I became invisible; leaving space for the medical staff to work, I was squeezed out of the circle and soon asked to wait outside. Sitting in the hallway, feeling helpless, fighting the panic within, unaware that the world outside was spring cleaning their homes, dyeing eggs, and preparing festive meals. The time stood still. I was grounded only by the sound of a door slamming open as the medical team rushed out, wheeling my baby in her bed and racing down the hallway, toward the elevators, and down to the ICU.

Years later, that same nurse who had turned deathly pale that day, the one who had given our baby her very first bath just days earlier, confided that at that moment, she was certain - Ema was gone.

Today, it feels as though there is hardly a more profound way to celebrate the Resurrection. From all of this, a new version of ourselves emerged. And surely, eventually, we were able to bring our baby girl home. She defied the odds more than once and grew into a remarkable six-year-old; full of life and vigor, strong-willed, yet generous. And oh so funny!

"Mom, when is the Holly Bunny coming to dye the eggs?" she asked the other day.

To all who celebrate these days...

May the light of Easter pierce through the darkness, illuminating your lives with hope, love and renewal.