Erik Goes Back, Part 1

January 5, 2013 in Uncategorized

Hebrews 11:35-12:2

35 Women received back their dead, raised to life again. There were others who were tortured, refusing to be released so that they might gain an even better resurrection. 36 Some faced jeers and flogging, and even chains and imprisonment. 37 They were put to death by stoning;[a] they were sawed in two; they were killed by the sword. They went about in sheepskins and goatskins, destitute, persecuted and mistreated— 38 the world was not worthy of them. They wandered in deserts and mountains, living in caves and in holes in the ground.

39 These were all commended for their faith, yet none of them received what had been promised, 40 since God had planned something better for us so that only together with us would they be made perfect.

12 Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God.

Five years ago today, my sweet son, Erik, went back to the hospital for the last time.

On the 18th of December 2007, they announced that Erik was going home. The following day he would be ejected from the NICU. I had no baby supplies at home, had made no preparations. My sons were born at 28 weeks. I had been at the Ronald McDonald House since. I was not ready.

He weighed only four pounds and had only been off of tube feedings for a few days. He had spent one night outside of his isolette, and none disconnected from the vigilant monitors. I was shocked. “No,” I told them. He wasn’t ready. We needed more time to be observed as a nursing pair, and Erik needed more time to grow.

They laughed at me. “You worry too much!”  Erik had stopped breathing several times in the NICU. The nurses were alerted by the alarm connected to his monitor. “He needs a monitor at home,” I told them. They laughed some more.

“How am I going to know he’s still breathing?”

Belly laughs, and a casual, “You’ll know.”

Panic began to take me. Everything in this NICU happened without warning. Flash: you are nursing. Flash: no more isolette. Flash: you are going home. I waited for the next Flash.

Do you know how small a four pound baby is? Without holding one in your arms it is hard to comprehend. The sight of my tiny son bundled for his “car-seat test” dwarfed him even beyond my own understanding. As I looked at him I wondered how he was going to survive.

Our last night in the hospital we were given a special good-bye room. Erik slept next to my bed. If he survived the night without incident we’d be set adrift in the morning. In the morning, we were both still alive. They sent us home.

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I knew what the hospital was doing. They wanted to say he’d be home for Christmas. Part of me liked the idea, but the bigger part did not. His isolette was decorated with my Christmas drawings and cut-outs. I was happy to stay in the NICU if it meant him coming home stronger and more ready to live without constant monitoring. I sent out a scatter-shot of words, “At least give us a monitor.” It echoed back as a laugh.

The evening of December 20th they sent us home. They wheeled us out like a new mother and babe; and with a bit of pomp and worn-out fanfare, we launched. I felt myself break on the rack of grief. Battle-worn from the NICU, I felt like a fraud. My face sought the sky as I choked on tears. When would I get my answers? Where was my child?

I was short one babe. Nothing could change that. In the hall, the sound of two little boys grew distant behind me. The days following Arthur’s death, two ghostly boys has flitted in my shadows. A laugh would nearly sound at the edge of my ear. I grieved what I was missing, the joy of my beautiful pair as I moved toward the identity I rejected, the mother of only one living son.

Erik was in my arms. Finally, no plastic between us, he was in my arms., No one could say when to stop holding him. He was mine, and we were free. My heart surged again and again against the same rock, cracking. My mind built boxes and locks for those boxes as the free reign of my heart learned boundaries. I was bringing home my son! But my joy waited behind a thick, black wall of grief. In many ways, it is waiting there still. Grief was my new life.

It felt wrong. The whole ride home I watched him. No tubes. No wires. The forceful beak of Allegheny General had ejected him as a fledging; yet beneath his pile of blankets lay a naked chick. I was scared. His quietness might represent peace or death. I coveted the monitors at Allegheny General. Resentment rose in my gorge.

Two weeks and two days. That is how long we had. I didn’t know it on that two-hour car long ride home. We stopped twice for Erik to nurse, me so anxious and exhilarated, him unaccustomed to the unending offering of warm flesh and milk. More and more we merged, a nursing pair at last.

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Those two weeks and two days were magic. Erik’s hunger for human contact was ferocious. As he nursed, two fists gripped themselves nearly white as tiny growls insistently surged. I laughed when he nursed. He sounded like a Tasmanian devil. If you’ve never heard one, listen to their sounds on YouTube. That was Erik at the breast. Tiny fists worked, legs pumped, and his warm little body squirmed closer to mine with and between each suckle. He nursed like he was starving. He had waited for me for so long.

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His stomach was the size of a raisin. he would nurse for and hour-and-a-half, pass out, and then wake up fifteen minutes later to nurse again. I got less sleep than when he was in the NICU. I didn’t care. He was finally mine. This was the life I had imagined, and I loved it.

What bliss. My sleeplessness only merged with my euphoria. A soft envelope of joy suspended me over a sea of snakes. I turned my back to the writhing as much as I could to drink in the miracle in front of me. Erik needed me. Grief would have me forever. More boxes rose up from the blunt force of my hammer.

For the first two weeks and one day, I had help. After two weeks and two days, I was on my own. Sleepless but focused, we were going to be alone together for the very first time. I still wanted help; but just like the forceful ejection from Allegheny General in Pittsburgh, this wasn’t my choice. Erik and I were alone.

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It was around 9:30 a.m. We had been awake all night. Finally full, you fell asleep. Completely exhausted, I decided to nap.

Your face was like an angel, Erik. You were an impossible miracle alive on the earth. Everything about you said wisdom. Your bemused look at the world reflected it. I was waiting to hear what your gorgeous thoughts were thinking, Erik. I watched your smiling face as you were sleeping, watched the golden glow of the sun lift behind you. I wanted to know you.

You were gone. I snapped awake with a fear, fixing on the blue of your face. “Erik!” I lifted you and blew. Once before you had done this. I blew in your face and you revived. That had been about a week ago. Again, they laughed and said I worried. Brief examinations showed nothing wrong and the issue was dropped. I blew again, started CPR, and dialed 911.

I had no help. I don’t really know CPR. I reflected back on my high school health class and did the best I could. I continued CPR as I put on my shoes and talked to 911 on the phone. They couldn’t find my house. I had to call back.

My son was limp and blue. I couldn’t feel. A nerve plugged into a brain, I buzzed like a downed electrical line flailing imitations of life against the snow. I screamed at the ambulance as it passed once, then twice and then three times, unable to locate my street.

When they finally pulled in and took my son from me, I fell. On my knees, I pressed my face into the gravel and screamed. Screams and screams turned into prayers that turned into a long slide through another narrow tunnel even more confounding than the first. This is one of the last pictures I have of Erik. This was the shirt they cut off of him in the emergency room as they struggled with how to resuscitate an infant so small.

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They weren’t prepared. I heard what they were saying. They didn’t have equipment to treat a baby that small. They struggled to intubate him, did an x-ray and found they’d pushed the tube in too far. His lung was damaged. They backed the tube out, shifted him on the bed, and ripped out the whole apparatus. It began again, was inserted too far, another x-ray was done, and his lung was traumatized further. I sat and watched. I went dead.

Someone was touching me with something that felt like love. It was a nurse. Her eyes were looking at me, her hands were about me and her voice was leaking into my ears. I wanted it. She said she was calling someone, a minister; and a woman appeared. His wife. Her name was Judy. She never left me.

I want to say it was smooth sailing from then on. In truth, Wetzel County Hospital continued to let us down. After Erik was resuscitated, they called me over to talk to him. He was crying. He was fighting the ventilator. He was responding to my voice.

None of that was recorded. Instead, they almost immediately administered paralytic drugs and prepped him for transport. I begged them not to sedate him in his fragile state. The staff, untrained in the care of babies like my son, said it was protocol. Heavy sedation was administered. I never saw him awake, again.

At Children’s Hospital in Pittsburgh, Erik lay in an open-sided isolette. They knew he wasn’t going to move. What happened to the crying baby I had seen in New Martinsville? I asked my question into the dark to a PICU nurse who had no answers. The Hospital had taken him back.

…..to be continued