“What we mostly try to do here, is try not to overstimulate. We want to keep it nice and quiet and calm for ECMO babies like Miles. All these visitors and chaos are just not good for him.” Nurse B said disapprovingly to my mother.
It was Monday. Miles had been on ECMO for thirty six hours, the moon blocked the sun in a total eclipse that day, and an unstoppable steady stream of our family flowed in and out of his NICU pod all day.
“Maybe she is right, Mandy. Maybe all the chaos is not good for him.” My mother rationalized.
Even though he remained sedated on morphine and was never conscious, I had asked that anyone who came to see Miles bring a book to read to him or have a song to sing to him. We took pictures with him. We held his little hand. We talked to him.
I will say that now, more than ever, aside from my own under-appreciated profession as an educator, nurses are simply some of the most wonderful human beings on the planet. Rarely did I ever see a NICU Nurse even sit down during their long twelve hour shifts. They tended to every beep, every cry, every sweet sick baby. I respected any procedure or policy they informed me of and absorbed every bit knowledge they graciously passed on to me.
But Nurse B’ s comments got me hot.
Not good for him? Family telling him they loved him? Telling him to fight to be here? Saying a prayer over him? What were we supposed to do…stand around and watch him die? Sorry, that was not going to be his story, Nurse B.
If he had a 50/50 shot at life, and the Lord had other plans for this guy, his story was going to be that in the three days or five days, how much ever time he was allowed on this earth, he was loved. He was wanted and we were so very glad he was here. He would hear music and listen to stories of adventures that awaited him. He would feel the warmth of a kind touch, not just the sting of needles and the cold of plastic tubes.
Love. The love that only a family can make you feel. You feel it at Christmas and on your birthday. You see it on family vacations. Loud, crazy, chaotic love. As powerless and helpless as you feel as parent of a child on the brink of death, Love is the one field that we are the experts in. So respectfully, get lost, Nurse B. This is my department.
That’s how it went for the next two days, praying hard with loud and crazy family and close friends, watching the monitors as ECMO continuously pumped clean blood into my baby. He was fighting the bacteria that was now ravaging his organs, brain and spine. Seventy-two hours in, he was stable, but still deep in the woods.
Late Tuesday night, Handsome Dr. H came to Miles’ bed.
“Do you remember one of the negative side effects of ECMO that we discussed?” He asked us. He went on to remind us that ECMO uses a lot of blood thinners to keep the blood from clotting. So much thinner that it can cause brain bleeds and hemorrhaging. Three days in, Miles was not the exception and his brain had begun to bleed. Brain bleeds put a risk to his quality of life, should he live through this.
“He’s thrown us a real curveball and we are going to have to take him off the machine much sooner than we had planned.” Dr H looked worried at the idea. They would remove the cannula out his neck and shut down ECMO early Wednesday morning. Whether his sick little body was ready or not, he was going to have to continue this fight all on his own. As my husband put it, Miles was going to have to show up.
We were beginning to suspect that Miles may like chaos.