Liam Stewart and Benjamin Peter were born on Saturday, May 5 after an acute case of twin-to-twin transfusion syndrome and a possible placental abruption. We are in hospital and will be living here with the boys in the NICU for a few months. They are with us, but barely.
3 AM: that familiar heaviness. Bagfuls of marbles, as I know they get for me. But there’s liquid gold in them there marbles. Despite everything I can be useful. I can contribute to healing instead of just going down there and falling apart.
I’ve never even been stung by a bee, I remember telling the doctor as he put the mask over my face. He smiled, even as I saw his eyes well up at what he knew was such a grave day for our babies. Why do bad things happen—chaos theory, karmic punishment, God’s master plan?
So far, time passes quietly. Both boys are on various degrees of drugs and ventilators and life support, and each day the doctors test their limits a bit more, coax major organs and body functions towards regeneration and independence. Tiny steps forward and backwards.
Love makes me greedy. I want the world to be as vivid and as accessible for them as it is for us, unhindered by disability. Is that too much to wish for, and to want it so badly? To wish for them to overflow with ordinary life, with school crushes and soccer practice and stinky socks?
They just took Liam into the OR for heart surgery. The doctors say there's a five to ten percent chance of a threat to his life. 'His blood vessels are like wet kleenex,' she said. 'We have to be careful.' Never has five to ten percent been so significant.
Many of you have shared stories of twin-life and NICU-life and survival and loss and faith. Others have simply sent one line: I’m sorry for you. This all just sucks. It's full of good-salts, like miso soup on a hangover. I can’t thank you enough.
TPN at 6.4, lipids at 1.18. 1 cc of breastmilk every 6 hours, but with triple-antibiotics we'll stop feeding for a day. His chest is wet and crackly without suction. No murmur, temp is fine. His chem strips were 7.6, 6.4 and 8.1. <blank stare>
Ben, the little spitfire, opened his eyes in the past couple of days. Black saucers, all-eyeball. At this point I'm no more than light and shadow but as I move into his line of sight he turns his head as if to address me. 'Okay mama. Here’s the way I want things to be.'
I’m calm when it makes no sense to be calm. I’m a mess when it makes no sense to be a mess. I change the diaper of my two-pound son. I screw it up and get poop on the bed, which is a pain in the ass for the nurses, but I’m in there, trying.
I could accept if Liam doesn't make it. 'Accept' as in rationalize. I would be forever gutted, but I could distill meaning from it. The only other outcome I can accept is that he will defy everyone, completely unscathed. What if he lands somewhere in the vast gulf in between? This is most likely, by a long shot.
It's a milestone: Liam is off the ventilator. He may have hiccups, backsteps. But it is such sweetness to see his face unobscured by complication. He gurgled at me, pulled faces in the nervy twitchiness of preemie sleep. Today, magic from both boys had me smiling all the way home.
We are torn between despair and optimism. No matter what you say—whether it's I'm sorry for you or Hang in there—we drink it up gratefully. I just wish we could choose one camp and stick to it. To feel this way, both drawn to faith and abandoned by it, is to feel completely rudderless.
One month down. Two months to go, as the optimist flies. I am on auto-pilot, a blur of NICU rounds and charts and highway driving and fluorescent lights and boob-sucking robots that tractor-beam me from one end of the hallway to the other, wheeshing FEED-ME-SEYMOUR!
I wish I could stop time-travelling. 'Last time I saw her, I was a few days pregnant but didn’t know it.' Or 'Last time I was here, I was pregnant, and the boys were whole and safe. Nothing bad had happened. I was still just myself.'
Evan makes fart noises with a squeezy toy in the bath. "Dat's RUDE!" he giggles. But everything normal is trumped by everything else. Now. at 12:33 AM, a neurosurgeon is putting in a shunt to relieve pressure on Liam’s brain from hydrocephalus.
Liam died this morning, our sweet and miraculous son. It was all just too much, the doctors tell us. Birth asphyxiation, the bleed, hydrocephalus, the shunt, a collapsed lung. During the operation they realized the damage was much worse than the worst of ultrasounds. He was breaking down.
We drove home today from the hospital, from one boy to another, and I rested my head against the car window, stared out at this land-borne ocean of brackish green. And suddenly there he was: Liam, the blur whizzing past him, full of amazement.
Pictures show what I couldn’t see in front of me. He bloomed as he graduated from the vent, looking almost plump in his stability. But then, a few days later, he began to falter. I can see that now, tentatively venturing into the ancient past of two weeks ago.
Now he's gone and I am tapped of grief, exhausted for the time being. In ordinary conversation I slip into recalling the clinical highlights of the most difficult night of our lives, which happened just over a week ago. Then I walk away feeling callous and cheap.
I rolled him down the hallway in his crib-cart, stomach butterflying as I looked down at him in his nest. I’d picked out something for him to wear, the first time. No more nubbly PROPERTY OF N.I.C.U. sleepers for us. From here on in, he’s an all-stripes boy. I guess this means he’s finally ours.
The single, long alarm rings across the paging system. NEONATAL TEAM TO ROOM 311, STAT. Said once I could pretend not to hear, drift back into uneasy sleep. But echoing in my own private darkness, I’m left boggle-eyed. They said that for us.
On the cabin deck with this view: a clear, amber-brown lake rich with tannin, wind in the poplars, a jewel sky and our canoe. It took us through everglades past friendly turtles and lilies and beaver dams to the gnarly old maple that now stands watch over the resting place of our son.
Community, resources, and reflection for parents of lost babies and potential of all kinds. One of us, only half-joking, said this will be a place where us medusas can take off our hats, none of us minding the snakes. Babylost mothers and fathers, this place is yours.
I founded Glow in 2008, a year after Liam's death. It was and still is a safe space and a warm room. Here's a distinct set of writing that dives into the after-life of loss, beyond what's here: shared bumps, reckonings, and turns of the kaleidoscope.
The woodstove is always on. Comfort, solidarity, and a safe space for bereaved parents. Any time of day or night, talk to each other in the discussion forums at Glow.