I was thinking about the day my daughter came off of what they called Ecmo. Short for extracorpreal membrane oxygenation. Similar to life support. Heart and lung machine. I’m sure there are other names for it. She was on it for about 9 days after her heart surgery.
I used to sit and watch her blood move through tubes,out her body and back in. Her pretend heart the size of an old copy machine. Just casually plugged in to the wall. What if the power went out? Or someone tripped on it? Does it have back up power? But nurses flowed around with ease, like a dance. Checking lines and fluids and numbers and medications. I didn’t want to be in the way. No one was even concerned they might accidentally unplug her or trip over tubes of her blood, her life would spill all over the floor. Who would have to clean it?
There was a man who sat for hours and watched this machine. It was his only job. He adjusted things. Entered things. I had to hold my hands not to ask him questions. Not wanting to distract him from a single thing. What if he is distracted today? Did he sleep well? When does he sleep? When do any of these people sleep? Or eat? Or pee? He can probably run a marathon and not need to pee. He protected my little life with his. He was not distracted. I bet he could sit and watch a sunset so well, or a mixer beating cookies, or wait in lines.
The less clouded my brain the clearer the images come. Maybe my brain is saying, hey I’m finally feeling like I can pull these memories out for you to have, I was protecting you for so long. Afraid to show you.
After she came off ECMO Her chest was too swollen, her heart too swollen still to close, they had to put protective plastic film over her heart, it looked like Suran wrap. Was it strong enough? I’m sure it’s not what it was but it seemed to easy to just remove. Easy to puncture. The nurses knew I didn’t want to see her little heart and covered it, until one day it wasn’t. Now I have seen it. It was beating. Like we feel when we feel ours. That day I touched my own chest to make sure if was safely inside. Held on to it. I wanted to touch hers. Just lay my hand gently on her heart. It’s implanted in my memory like a stamp. Or an acorn. A little bruised acorn beating. It’s too small. How does the heart grow? Mine is the size of a fist. How will hers grow with this plastic? Can it breath? Does it need to?
The first time I saw her heart was the day after her heart surgery. It went terrible. Her heart surgery went terrible. She had what is called a complete AV canal.
Atrioventricular (AV) canal defect is a large hole in the center of the heart. It’s located where the wall (septum) between the upper chambers (atria) joins the wall between the lower chambers (ventricles). This septal defect involves both upper and lower chambers. Also, the tricuspid and mitral valves that normally separate the heart’s upper and lower chambers aren’t formed as individual valves. Instead, a single large valve forms that crosses the defect in the wall between the two sides of the heart.-American Heart Association
A big hole in her heart. Not a little one. I remember when I told someone this once they said “oh, lots of people have a little hole,if you are lucky it will close on its own or never need fixed.” Lucky? It gave me hope. People give people hope?
I came to know that a heart should look like a four leaf clover on an echocardiogram. Those are things I know. There are lots of things I don’t know that some do and lots I do that some don’t. Hers was not a four leaf clover. It was a sonogram of an acorn for all could tell. It lacked all the proper walls to form this lucky leaf. We weren’t lucky.
She was 7 weeks old. Her surgery was moved early from what they call failure to thrive. She was too tired to eat. She was grazing more. Breast feeding every 10-15 minutes. They wanted to do surgery the next Friday. I said “I have to work that day.” I was going back to work this day. It seems so silly to even remember this.
The day of her surgery they found her airway too small to intubate. The airway tube to go down her airway to put her on a breathing machine to do her heart surgery. This was a significant finding. They had to repair both. Splice the airway and remove the section narrowed and make less narrow. This is just what I heard. I’m sure it wasn’t splicing like you do climbing ropes. That may not even have been what I heard, it’s what I remember.
Her surgery was longer than they anticipated. Longer than I anticipated. I still can’t properly process this day. I don’t think I’ve been far enough away from it to have a chance to look and see what I thought then. I keep hoping it will come. The way it felt to be told things you have to be told and not be able process quick enough. It happened too fast. It’s been 16 years and I still can’t see that day well. I see the next day.
I woke the next morning around 3 am off this leather couch I was stuck to, to go see her in the ICU. I went down and even remember people running past me. Just two. They went straight to her room. A room she was sharing with several other infant heart patients at this time during a hospital remodel. I didn’t hear anything specific or think anything specific. I just went to her room.
There were too many people there. Her surgeon was there. Around her little bed that looked like a tray with a heating lamp above her. She was laying out, arms and legs out. Like she was reaching up. Her ligaments are more lax than others so her angles looked like her hips had been dislocated the way her legs were. Why was her surgeon there? I walked closer. The man who works in the chapel came to me. I kept walking. I remember it being slower. I heard. “Moms in here” then I wasn’t.
They had her chest wide open and he was pushing on her little tiny acorn heart. While machines were being moved in. People moving. The chapel guy was talking. To me? I was staring at my girl. Worried the tray would fail and she would fall off. Worried he would squash her tiny heart. Do surgeons practice this? Massaging hearts back to life? How? With fruit? Real dead hearts? Or was this his practice? He was doing it too hard? Too soft? Not fast enough? Too slow? Did I imagine this all? Was he really there? Was he really doing this? How can I be sure?
We were told her heart had stopped. They had to put her on this machine to give her heart time to heal. To allow the bruising to heal, the swelling to go down. Her chest would be open for awhile. She will be kept extra asleep. She may not make it.
But she did. She has a perfectly repaired 4 leaf clover heart. Probably the size of a Burr Oak acorn by now. Or a small fist.
I write about this now because I finally can. I can finally get the words to come out to come together and make a sentence. It seemed backwards to me the way it came out. I started from a moment and went backwards. But forward. To get forward. My brain is thawing. Moving forward.
Aspenleaf 