Day 40 & 41 - NEC. The scariest acronym I've ever heard.

This is the hardest post I've had to write for some time. I've been avoiding it a little bit. But it's important to remember, even the hard days.

A year ago I noticed something was wrong. The heart surgery had worked, it had helped fix his kidneys, but it hadn't come without a cost. He had been on heavy pain killers. They had finally weaned him off all that and he was back up to half feeds.

Except that, all of a sudden, he stopped digesting well.  Normally he'd been a starving baby.  They do this thing in NICUs, it's called "checking for residuals."  Babies as small as Jonathan, too small to eat by themselves, are fed through a tube. In order to see how they're digesting or processing food, the nurses put a syringe at the tip of the tube and pull back, to see how much is left in the stomach.

J on the 25th, before fluid retention.

Usually Jonathan had nothing left in his stomach. In fact, usually he got ansy half an hour or so before feeding time, a sign (I thought) that he was hungry.  He still couldn't cry, not outright. He had a breathing tube that went through his vocal chords. If he was in extreme pain he'd have silent wails, but must of the time when he was hungry or upset, he'd just be ansy -- try to get comfy without tears.

J three days later, retaining over 1 lb of fluid on a normally 2 lb frame.

But lately, out of no where, he'd had a nearly full tummy each time they checked. A nearly full tummy and dark circles under his eyes. Dark circles are my family's tell tail sign of illness and pain.  I figured it was because we had taken him off the pain meds, he was feeling the heart surgery.

That was a year ago today. Something was wrong, but they were keeping on. "The doctors definitely know about him, I'm not sure what they can do for him," the nurse said when I asked her about his sudden decline in appetite and dark circles.

I figured it was from the surgery, that he was still touchy and a bit lethargic from all that. He had a nurse working with him that knew him well. She said she wished he was a bit more fiesty. His blood gasses were bad. He'd stopped peeing over night. His arms and legs were so taught from all the water his body was retaining.

(Because a happy picture is needed.)
This is J's first outfit, first time with clothes, just a day before
severe edema and NEC hit.

I waved at his primary doctor, back from vacation finally after a month away. His doctor nodded our direction but was with another patient. He didn't drop in, but worked on Jonathan's chart from the other side of the door.

The nurse spent a lot of time with Jonathan that day, trying to get him comfy.  Every turn, though, every prod or poke would send his vital signs off.  Once three nurses came in to see what was going on.  All she'd done was re-positioned him. It was enough to set the ward in high-alert.

A few hours later, they started him on antibiotics for NEC, or necrotizing enterocolitis.  If you have brushed up on your Greek lately, you know necros means death. And then to throw some Latin in there, Enterocolitis is what was dying (intestines) and their current state (itis -- inflamed).

NEC is a bacterial infection. That was the somewhat good news. It means he could get antibiotics.

NEC kills premature infants. That was the bad news. If he had it - as it seemed they thought he did - it was very, very bad. It takes them fast, sometimes faster than the antibiotics can help.

But we'll leave it at that.  He was sick, very sick.

I looked in on him. He was awake, but I hadn't known it because there'd been no motion from him. He was staring straight up at the ceiling of his isolette. Not a muscle in his body moved. His eyes were transfixed.

I put my hand in his isolette, put my pinky up to his hand. He grabbed it.He continued to stare at the ceiling, his eyes still fixed on a distant spot. He wanted to give up. I could tell it. He wanted to give up.

People talk about seeing the light when they die. Maybe he was seeing a piece of that light on the horizon. Maybe that's why he stared. I hoped he knew he was surrounded and loved. I felt surrounded and loved from all the prayers of all the people who started praying as soon as they heard his diagnosis. I hoped he felt it, too.  We were loved. He was loved. My pinky was maybe that reminder to him.

I shifted my weight. This caused my hand to move, just a little bit, my pinky to slip. His hand went into a white knuckle. A tiny white knuckle, holding on for all it was worth. Don't leave me momma.

"I'm here, Jonathan." I said.

He broke his gaze and glanced my way as if to say with his extreme lethargy, "This is really hard, mom. Fighting is hard."

"Don't give up, Jonathan." I said, "This isn't life. This is the NICU. Life is better than this. Life isn't wires and machines and pokes, it's better than that. It's so good. It's sunshine, snuggles, rainy days, sisters, chalk and bubbles, books, breezes. You have to make it. You have to keep fighting. Life is better than this. I want you to see it."

I stayed with him late into the evening. The nurse brought me sheets and told me I could stay the night if I needed. I spent as much time as I could at his bedside, letting him hold my hand whenever he was awake. He stabilized around 7 or 8 pm. I almost stayed the night, but he looked good enough that I thought it'd be safe going home. It looked like the antibiotics were finally starting to take effect. I left close to midnight. The hospital was near our home. He had one nurse on his care that night, so he would be watched over so very carefully.

I told the nurse to call me if ANYTHING, anything, looked like it was going the wrong direction. I wanted to be with him. I didn't want him to be alone, not if he... But anyway, they told me he was stable and promised they would call. I left.

I called when I woke up to pump. He was still okay.

The next morning I went in. I spent the day with him. Mimi was back in day care and Ella was in school. I was grateful. Steve came with me, and my sister drove up from a state away. It was so hard. So hard to see him there.

He was off all feeding now. But it wasn't like he wanted to eat. Nurses at the hospital were too professional to curse, but I think one or two wanted to as they tried to get a new IV in him.
"Why didn't he have a PICC line in any more?" they asked.
"It had gone bad," I said.
"Why didn't they put a new one in before he went in for his PDA ligation (heart surgery)?"
"Because he was up to full feeds, then," I said, "before surgery. He was up to full feeds. We didn't think he'd need a PICC line anymore past one or two days out from surgery."

He was running out of veins. And he was swollen. And tiny.  It was a nightmare to find a vein to prick.  Each nurse referred to a nurse above her with more experience and on the fifth nurse we finally got a poke that worked. She had to put the IV into a vein just this side of his skull, right on his hair line above his brow.We hoped the IV would hold. For a while at least. They normally go bad after only a few days.

I went out while they poked. We grabbed lunch. When we came back, I stood at the side of his bed. I was so glad I could now stand for long periods of time without my belly scar aching. My sister came in to town. My oldest brother, Carl, texted her. "Give him a fist bump for me," he said. He wished he could be there for us.

She showed me the text.

"Go ahead," I said.
"Really?" She asked.
"Yes, just... scrub your hands again and use hand sanitizer."

The fist bump on J. Notice the unicorn IV

I wanted my family to know this guy.  A small touch from his aunt's knuckle wouldn't hurt. She should know him, should be able to say she touched him. It reminded me of the first day I met him, when I was so scared, but put my finger in and barely touched his little hand, afraid I'd contaminate his pure environment, but sure that I needed to have touched him while he was able to feel.

She fist bumped, her first knuckle as big as his entire fist. I took a picture. Then she quickly closed up the access slot on his bed.

Steve and my sister went home that night to hang out with the girls.

Again I didn't want to leave.  I asked the nurse "how will we know?  When will we know if he's going to make it or not?"  She told me she couldn't be sure, but in the cases she'd seen, that it often presented itself in the first 24 hours. He'd made it through that part. That was a good sign.

My sister went home.  A few hours later I got a call from Carl. His buddy was a pilot. Had a buddy pass that he wanted to give to Carl. He'd gotten the day off work. He was coming in to see us the next day, just for the day.  He'd be there in the morning.  We arranged for us all to go to the hospital together that next day.

Now we were over a day past the diagnosis. He still looked so very sick, but he was stable. Steve and the girls picked me up from the hospital.

"Is Jonathan going to die?" Ella asked from the back seat.
"I hope not." I said.

And then I realized that wasn't an answer. Maybe my five year old deserved an honest answer. I'd want an honest answer. But I didn't want her to always be scared, either.

"He might," I said, "He's really sick right now. We'll know within the week. If he's okay in a week, he'll be okay."
She nodded her head.

I hoped I was right.


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I can't end this post there. I have to fast-forward, just in case you dropped in on this blog from some internet search or something. Two nights ago, August 2013, Jonathan was sleeping soundly. I picked him out of his crib at our house. Mean, I know, but I had to hold him. I had just realized the anniversary we were approaching. I remembered my little swollen baby hooked up to wires as I thought about my healthy one year old, and I had to look in on him. Once I had, I had to hold him. "Was it worth it?" I whispered as I snuggled him. "I told you life got better, wasn't I right?"

He can't yet talk, so it's no surprise he didn't answer. He probably wouldn't have even if he could.  He buried his head in my shoulder and tried to go back to sleep. I put him down with a kiss.

Yesterday he found a friend (in his sister's inherited doll).

Yesterday he was in one of the giggliest moods I've ever seen.  He thought the whole world was a fascinating joke. He even tried to stand on his own (leaning on something) for a few seconds. He looked at me with such pride in his eyes.  "Did you see, mom? Did you see what I just did?"  And then he laughed.

I had my answer. Yes, yes it was worth it.