Journals
Journals - July 6, 2023
TW: a story about (almost) infant loss
July 6 is a hard day. It’s the day we shut the bedroom door, with the possibility of it being forever.
The day we didn’t think he would ever come home.
The day we held our breath and held each other while we couldn’t hold him.
The day the doctors told us that NEC is the big bad monster of the NICU. That it scares even the most seasoned doctor and nurse. It comes quietly and with no notice. W’s case came on quicker and more silently than most. Within 12 hours, he went from “healthy” to almost gone.
We rushed to the hospital in the early hours of that awful day and scrubbed in. We knew it was bad but weren’t aware just how bad. As we stood at the scrub sinks waiting for someone to take us to his crib-side, surgeons and doctors flooded in. “We’re here for bed X, emergency surgery.” “We’re here for the NEC patient in X.” Carts and surgical tools were rushed past as we stood helpless.
That’s our baby, I said. Bed X is our son.
"That’s our baby, I said. Bed X is our son. "
When they finally took us back, they had to part the sea of surgical machines and nurses and doctors. If I did not see his heartbeat on the monitor, I would not have believed he was alive. We held his hands, and we told him how strong and brave he is. We told him that we will see him again. He will come home. He will live.
We signed the paperwork and spoke to the surgeon, who said that this was the spaghetti being thrown on the wall. This was the last ditch effort to see if he could live. The “we have done everything else, and this is the last option.”
We thanked them all profusely. We cried and left him there to have emergency surgery in the NICU unit because he was too ill to move to the OR.
Then we waited and waited. He was alive but in critical condition. We weren’t out of the woods yet. His small intestine was dying. They took out as much as they could, but they may have to take more. In 36 hours, we went from a healthy (as healthy as you can be at 2 lbs) baby to a baby holding on by a string.
We have pictures from that night that will never see social media. We have memories from that night that will never be shared outside our closest circle of friends. W’s health is his story. As he grows and takes ownership of his disabilities and diagnoses, he will become the storyteller.
"W’s health is his story. As he grows and takes ownership of his disabilities and diagnoses, he will become the storyteller."
I’ve said it before, and I’ll say it again – we are happy to talk about this with you, just not where it will live on for eternity in the depths of the internet. We are happy to share our story in detail if you need support or camaraderie. Reach out.
Our story is still in the making. Though we are out of the hospital and out of the metaphorical woods, we still have a lot of mountains to scale in W’s health journey.
If we are quiet on these platforms, it isn’t because things are solved. So often, people ask how W is. It’s a loaded question, one many don’t actually want the real answer to. We are quiet because we have learned what it is to almost lose a child. We have learned that the ordinary and mundane are the things to be celebrated most. We have learned that life is unpredictable and precious, and messy, and the things that are truly important are few and far between.
"We are busy loving our boy and learning how to be the people and parents and advocates that he needs in this moment."
