Thursday, July 18, 2013

Day one of life

A year ago today Jonathan had survived the night.  He was now one day old. To me, that meant a great deal.

It meant that he was legit. No one could call him a stillbirth.

It sounds really morbid now, but it mattered to me then - I hoped he would make it to one week.  Somewhere on the vast internets, I'd read that a baby is considered a stillbirth or perinatal death if they live for less than one week. After that they move into a different category.  I didn't really know what that meant, but I wanted my son to be a "real boy."  I wanted him to be the boy that lived. At least one more week. Because one more week meant maybe another month. Another month meant maybe he'd come home. Him coming home meant he'd probably live.

He had needed a blood transfusion to make it through that first night because of low blood pressure.  This was the first of many times when he would receive blood or blood parts. And it was the first of many times that this blood would save his life.

The amount of oxygen in the air he was breathing was somewhere around 25 or 28%. Steve and I were proud of this. We thought it was a good sign. The oxygen in our air is generally 21%.  So he was doing pretty good.  He was on a ventilator -- a machine that forces air into his lungs.  A tube went down his throat into the lungs and made sure that he had the air he needed and forced each breath in.

The amount of oxygen in the air he breathed was only one of many things closely monitored.  They determined how much oxygen he needed in his air by the amount of oxygen in his blood stream.  They tried to mimic the inutero experience as much as possible.  His isolette was full of steam, even, to protect his immature skin.  A pulse oxygen monitor was strapped like a band aid to his foot and read out his blood oxygen in real time on a monitor.  Too low (in the 70% range or lower) and it could hinder his development.  Too high (upper 90% range) and it could lead to retinopathy of prematurity and possible blindness.  So, when the monitors rang off, the neonatal nurses came in and changed his vent settings to keep his blood oxygen in just the right space.

They told us not to worry about the alarms unless they worried. I was glad they said that, because the monitors rang off a lot. Soon I learned to read the flashing lights. By about a month in I could tell why the monitors were ringing and knew how serious it was (or wasn't). I knew if it was his heart or lungs or blood pressure that caused the alarm. Before he was discharged I'd even learned how to read the accuracy of a pulse-ox reading based on the wave length shown on the computer.

Normally pulse ox monitors are put around a finger, but Jonathan's foot was about the size of a finger, so in the NICU pulse ox monitors go around the baby's foot.

Jonathan, day two. The red light on his foot is the pulse ox.

Steve was pulled three ways now instead of two. He had our two daughters at home, his wife recovering from major surgery, and a son in critical condition in an isolette.

My mom came into town. We now had two grandmas living under our roof. And you know what? We needed both of them. Steve still had summer work projects going on, theoretically. He had a student assistant working for him, so he had to make it into the office at least once in a while. But he wanted to be with his son. And his wife. And his girls.

The women and Steve sat down to discuss how to manage everyone's care. My mom and Steve would take turns caring for me, Steve's mom and Steve would both be in charge of the girls, and Steve would take care of Jonathan.  That's sort of how it went down.  My mom would also, of course, help around the house along with Steve's mom. And there was to be a good deal of chatting over coffee, as I imagined it, because I cannot imagine my mom and Steve's in the same house without coffee and chatting.

I was oblivious to most of this.  I was spending my time in a hospital bed. Again. Still.

My mom meets Jonathan
I'd had a dream the previous night.  I was at S.S.'s house.  In the dream she and her husband (also S.S.) had this great home with a spacious, modern open floor plan. The dining room moved seamlessly into a living room with modern furniture and a gorgeous fireplace.  They were speaking French.  E, my best friend from high school, was there with me, we were all drinking wine, and she was joining in the cordial conversation.  S.Ss' young son and daughter -- or was it two daughters? -- (in real life, estrogen is in short supply in their household) were calmly playing in a back room with plush carpet, a playroom that you accessed by going through a beautiful study with hardwood floor. I think they were on the floor playing dominoes. The actual game, not the noisy knock-over version. See? It was definitely a dream. Plus, I don't think the S.S.s and E had ever met. The only thing they had in common was their love of fine dining and the French language.  Oh, and me.

I was searching -- for someone -- thinking it'd be nice to have -- someone. I thought there should be someone in my life. Maybe kids someday. I was sort of hoping it'd come to pass. I think they were talking about setting me up with someone. I don't speak French very well, even in my own dreams, but I'm pretty sure they had some ideas about how to remedy my lonely situation. And I was pretty sure there was someone. But I couldn't remember who, or why he'd left.

I woke up from that dream and was a little disoriented. Hospital lights. Pink cabinetry. I looked over. Steve was rooming in with me in the hospital.  The man on the uncomfortable couch-turned-bed -- I remembered him. I felt a little odd, and hurting. Vulnerable. I thought that was a good sign that he was there with me. I thought, "oh, that's my love. He's here. That's a good sign. Maybe he wants to make this marriage work."

I wasn't alone after all. But it'd been weeks of mostly a hospital bed, mostly sleeping in a room by myself, and my subconscious was feeling it. The drugs deepened the vividness of the dream. A few moments later I realized that I had two, no three, kids, too. I could go back to sleep. I tried to turn a little. My tummy muscles were not working, so shifting my weight was painful.

Around breakfast my pediatrician stopped by to check on me and the scar.  She apologized for what she called the railroad tracks on my tummy. "I couldn't use the scar from when Mimi was born" she said, "because your uterus was still too small.  The baby was too low, so I had to make a different cut."

She seemed truly apologetic.

She also explained that because of the cut she needed to perform in order to deliver the little guy, I wouldn't ever be able to have a vaginal birth.  Somehow the death of that dream didn't matter as much to me as it might have three weeks earlier.

I had a baby. She had now had a major part in saving the lives of two of our children. She needn't apologize for an extra scar on my stomach.

I was wheeled to see Jonathan once or twice that day, but since it was hard to stand up, and since sitting in a wheelchair too long hurt too much, I could barely see him when I was in the hospital room.  Steve or my mom always needed to go with me -- both to wheel the chair and to help me stand and sit.  I was a bit taken aback by the name attached to him.  His first name on all official documents was still "Baby."  I had told them his name at birth, I'd even spelled it for them, so why was he still "Baby?"  We would have to have that changed. He'd lived, after all, so he was official.

To me he did not look like a new born.  He was my son, I desperately hoped for him, but he looked so little, too little. So translucent. His eyes were fused shut like a little kitten.

But it didn't matter.  He could grow into a baby, I knew he could. If we could just buy him enough time. And he was alive.

A written snapshot of today, a year later, July 18, 2013:

"I have a theory" Steve said as he fed Jonathan on the couch, "We didn't have a baby boy."
"No?" I said.
"No, we had a cupid!" he said.  "It explains his cuteness, his small size,"
"How he always throws his arms back and tries to fly!" I offered.
"Yes! and his commitment to the immaterial realm!" Steve turned the bottle a bit in his mouth, "Hence his lack of interest in food!"
Here Jonathan started smiling. Yep, dad, you're on to something.
"I will look up on the internet how to raise a baby cupid." Steve said to Jonathan, in all serious, "But for now, let's just assume that you need milk."

Half way through the bottle Steve stood Jonathan up on his knee and tickled J's neck with his beard. Jonathan giggled uncontrollably.  This was a good game.

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