The ECMO specialist said this to us after she left his room, clocking out at the end of her 7 am - 7 pm shift. We were in the hall waiting for my parents to arrive, calling our families and close friends to let them know we were saying goodbye to Ewan that night.
There were always two nurses in the room with Ewan when he was on ECMO. One ran the ECMO machine and the other nurse was there to keep an eye on everything else. On the day we said goodbye to Ewan, the two of them that were there had a combined ICU nursing experience of nearly fifty years.
The ECMO specialist that day adored our baby almost as much as we did. She was so tender with him, and couldn't get over how beautiful he was. It's so hard to believe that anything could be wrong with him. She helped us to get our hands under him in that little bed to hold him, even with all the tubing and monitors all around. It was difficult to navigate, but not impossible.
By all appearances, he had been doing so well the day before. While James grilled the doctor, I stayed as close to his bed as I could, touching him, talking to him, singing to him. His big blue eyes were wide open and fixed on mine. He moved his mouth as if he were having a conversation with me. Even for all he had been through, he was so beautiful. I stayed with him, my hand on his head, stroking his hair. My other hand finding any other bit of his flesh to touch: an arm, a hand, a leg.
Since he was doing as well as he was, we told our nurses we were going to spend the night at home, about a twenty-five minute drive from the hospital. It was the first time in over a week we had dared spend the night away. We finally left the hospital at about 7:30 Saturday night.
It shouldn't have surprised me the next day to find that things had changed as quickly as they had. We've seen this before, and it doesn't get any easier. He's not neurologically responsive. He hasn't opened his eyes all day. I couldn't believe what I was hearing. But just the day before ...
For our child, that was saying something. This is the boy who managed to stay awake more than one time even after receiving a bolus of morphine, who made sure he saw us if he knew we were in the room. This is the boy who, whenever his nurses touched him, resisted and responded: raising his arms, making a fist, stretching his legs.
When I lifted his arm now, he didn't resist. It would return to his side with a flop. I tickled his feet -- this had always had gotten a response before. Nothing. And then we heard about the infection, and the problems with his intestines. About poor oxygen perfusion. We he was born, everything else about our child save the heart had been perfectly healthy. And now everything was failing him.
The day before had brought so much hope for me. But I knew what this meant.
It took some time and discussing, but we finally agreed that artificially prolonging his life and waiting for a middle-of-the-night phone call saying he was gone was not how we wanted this to go. If we had to say goodbye, he was going to be surrounded by love and sent off in peace. My sister and a couple of friends were already there. Our friend Mary had come to take pictures for us. When my parents arrived, we descended on his room.
We are here to make this whatever you want and need it to be, the nurse told us. You let us know what you want, and we are here to make sure that happens. I made sure to ask for footprints, handprints, and a lock of hair. We discussed the logistics of extubation and when and how the ECMO would be shut off.
They paged Ewan's doctor who came in his street clothes. He put an arm around each of us and said he was sorry, offered his condolences. For what it's worth, I think you're making a brave decision -- and the right one.
I looked at the man who had been treating my son. He had advocated for Ewan, too. We didn't get to choose anything that really mattered for Ewan -- his heart, his surgeries, I told him. But we can choose this for our son.
The eight of us that were there gathered around Ewan in his bed and we took turns being close to him. I kissed his hands, his head, and I nibbled on those sweet little toes. We prayed over him and cried. Thank you, God, for the gift of Ewan. Thank you for his life ...
We couldn't get the words out without choking on them. A painful ball rose at the back of my throat. I was the one who had pressed to do it this way. And now that it was really happening, it was so much more difficult than I had imagined. I had cried so many times in the course of that week over how I didn't want him to be poked or sliced anymore, how I didn't want him to have to suffer anymore. But I still wanted my baby. I still wanted to bring him home. I didn't want to say goodbye.
Eventually, the prayer turned to song. As we sang, they brought a couch into the room and positioned it close to his bedside. The respiratory therapist extubated Ewan, and the nurse took all the stickers and monitors off his face, wiping off any last traces of sticky residue. James and I sat down, and they put a couple of baby blankets on his lap. I hated that this had to be his first time holding his son. I hated that the only time after his birth that we would get an unobstructed view of his face was at his death.
But I remembered what I had said to the doctor. We didn't get to make choices about Ewan's heart -- but we can choose this.
As the nurses waited outside, James held him and we cried. I touched his feet and kissed his toes, I reached up and stroked his soft brown hair. Even as near death as he was, he was strikingly beautiful. We continued to talk to him, sing to him, pray over him. The others in the room gathered around us to get a closer look at Ewan, to offer us a hand on the shoulder.
Ewan's grandmother and aunt each got to hold him -- everyone got a chance to kiss him, touch him, whisper their love to him.
I was the last one to hold him. Everyone but James and I left the room and I held my son one last time. I cried over him and apologized for what he had suffered. I told him how much I missed him and how much I had always wanted him. I thanked him for fighting for as hard as he did, for having such a strong will to live. And so I held on for awhile. We wept in silence.
Several hours had passed since we had entered his room. James and I both knew that we would never really be ready. But when we were as ready as we could be, we brought the nurses in. We're ready, we told them, giving them the cue to shut off the ECMO machine and every last monitor. The room went silent and still. The color of Ewan's skin changed almost instantly. I held on to him, holding him as close to my own heart as I could, and made sure not to pull away from a single second of it, to take in every last second of his earthly life.
I wept, and I wept. His heart rate slowed and after a few minutes, stopped completely. Ewan was gone. If I had had my say, I never would have chosen goodbye. But since goodbye chose us, I would not have done it any other way. He came into this world in my arms, and that is exactly how he left.
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Today (October 15) is National Pregnancy & Infant Loss Remembrance Day. Find out more.