Wednesday, August 28, 2013

Day 42: NEC part II (bowel perf)

A year ago now I woke up and, as usual, called the NICU. I called around six so that I was sure to get the nurse who had been with him all night.

She reported that he seemed much more comfortable than he had earlier in the night. I sighed. Maybe he'd turn a corner. Maybe the antibiotics had finally done their trick and he'd kick this NEC infection.

My brother texted to say he was on the plane to my state.

About an hour and a half later I got another call.  They had done imaging of his abdomen. They now knew why he was more comfortable. His distended belly -- his inflamed bowels -- had ruptured. They'd become paper-thin and died. He would soon get much sicker if they didn't do something. We didn't know how much had died. But he now had a surgery in his future -- that day, as soon as they could fit him in.

Ella's bus picked her up. Mimi went to day care. Carl's plane touched down. As he waited at the curb for our car, he got a text from his wife. "I'll be praying for you and all you'll be dealing with today" she'd said. He didn't know what she was talking about. When he got on the plane, J was sick, but things were looking better. He knew from that text that while he was in the air, something had gotten worse.

We got to the hospital around 9. Carl took his smart phone and kept our family abrest of what was happening. Steve and I attended to our son and asked doctors questions.

He looked very sick.

Only a day or two before Jonathan's aunt, Carl's sister, had given Jonathan a fist-bump for Carl.  Now Carl was here, traveled unexpectedly all this way on a plane to meet his nephew, and he wasn't going to get to touch him. Too sick. Things had turned. Even we were nervous to touch him too much.

By 10:00 am he was ready for surgery, the transport crib was waiting in a corner, and all we needed was a word from the surgeon. Carl put his hand on my shoulder, I put my hand on Jonathan's head, Steve put his hand in Jonathan's hand from the other side of the isolette. We prayed. About 15 minutes later, Jonathan was wheeled away.

I knew. This might be a deal breaker. We might have to decide to take him off life support.

If surgery was over and they had to remove too much of his bowel, he wouldn't be able to live. TPN -- the IV nutrition they give preemies -- damages the liver. It isn't a life-long solution. A baby's gotta be able to digest eventually.  We didn't know what "too much" was, just that it was a possibility.

And then there was recovery. The nephrologist (kidney doctor) had come by before the surgery.  He reminded us again that kidney dialysis wasn't an option. But it was clear that since the weekend, Jonathan had been retaining water. His kidneys weren't functioning right. After surgery things might get worse.  Already he had over one pound of water being retained in the tissues on his only two pound frame.  He'd gotten over one kilo, then over three pounds. A few weeks back I would have thought we'd be rejoicing over that. But instead I just worried. I wanted him to lose the weight -- gain it back as fat, not water retention.

If you've ever had edema, swelling of the hands or feet, you know how uncomfortable it is. That's what Jonathan had. Only it was over his full body. His ears poked permanently to the side, cartilage unable to move unless you put him on his other ear for a time and gravity did its work. His eyes could barely open as they too were swollen.

They have these cushion beds in the NICU called z-flow beds or cushions.  If you've ever had a memory foam pillow, they're a lot like that. Jonathan had been on one for the full time he'd been in the NICU. Now his head felt like one. That's right, the skin this side of his skull was retaining fluid so badly that when I lifted his head, my fingers sunk into the skin like a memory foam pillow.

I didn't blame him for wanting to give up. But I also didn't want him to give up.

And then there was the NEC itself. I asked, we asked, the doctors and nurses about outcomes. They said for some kids, having the infected bowel removed was all they needed, and we'd start to see dramatic improvement within two or three days.  With other kids, the surgery would be one more complicating factor, one stressor too many on their tiny frames.

There's a spot in my nose that curls up at the thought of something unpleasant. It isn't quite nausea, but it's similar. It's something like nausea and the start of a cry that won't ever quite come.

That's how I felt most of the morning.

I was grateful that Carl was there. We needed prayer. So badly we needed prayer. But I didn't have the energy to update anyone, and I didn't want to answer my family's questions, I wanted to be with Jonathan and Steve. So Carl answered questions for us.

Then there came the awkward point. Jonathan was in surgery. We had two or so hours to wait. The surgery had been explained to us and so I knew what it involved. I won't explain it to you, but suffice to say, it would take a lot of care and time. When surgery was done, we'd want to be in his room. I'd want to be in his room as long as I could. Like in the previous few days, I wouldn't want to leave unless I knew he was going to be all right.

But it was lunch time.  But I had that tickle in my nose that made food seem unappealing. But I was nursing (well, sort of . I was pumping at least) so I knew that if I didn't have something to eat, I'd turn into a cranky beast.

No question. Now was the time. 11 or so in the morning. Time to get lunch.  Even though he was in surgery. Even though my heart was in my stomach. There was nothing we could do in the waiting room but pray, and we could do that in the cafeteria, too.  Besides, Carl was there, and he'd want something to eat.

So we walked the bridge to the food court.  Three tables over was a very very tall man. The sort of man you can't miss in a crowd. Especially if you knew him. And we knew him. "Aaron!" I shouted.  Aaron was one of the chaplains at our college. With him was Dave, one of my co-workers.

How did my chaplain and friend show up at the food court in our darkest hour?

It didn't really matter. We needed prayer, we were granted a chaplain.

We spent the next few minutes praying. Or rather, Aaron gave words to us, he prayed for us. So did Carl. I can be a wordsmith when I'm having a pleasant warm day at home, sun streaming through the windows and cool breeze fluttering the shades, but when I'm trying to choke down a burrito while my son is in surgery, possibly about to be lost to us for good -- I have no words. Funny, huh?  My whole system reverts to groans. Deep, loud screams from my soul pulse out my temple, followed and proceeded by deeper vibrating groans. I don't really scream.  But my soul does. And in those screams, there is no room for words. Tears, yes. Or (as was the case here) blind staring, but not words.

So Carl and Aaron gave us words. I think they even laid hands on us. I'm not sure why, it wasn't our surgery. But I hoped those hands would somehow grant God's hand to guide the surgeon, keep him alert. And at the same time, hold my son. Keep him alive.


By 1:00 the surgery was over. The receptionist called us in to a private side room. It was one of the most tense moments, sitting there, waiting for the surgeon to come in.  Bless his heart, after spending two hours with our son's ... well, anyway... after spending two hours doing his job, he came in and the first thing he gave us nervous parents was a sincere (but not too excited) smile and a firm hand shake. That's all we needed, and we were ready to listen. Our son wasn't dead or near death, or he wouldn't be smiling.

About 10% of his bowel, including some of his large intestine, had to be removed. The location of the ruptures was good -- far down stream. That meant that as he healed, before the two parts of the bowel (small and large intestines) were hooked back together, he'd be able to digest some of my milk. The more of my milk he absorbed, the less TPN he would need, and the better off his liver would be.

"Does that mean his appendix has been removed?" I asked, remembering that in my anatomy class we learned that appendix was at the intersection of the small and large intestines.

The surgeon looked a little surprised. "Well, yes, I guess it does."

"Just needed to know," I said, "In case anyone ever worries that he might have appendicitis when he's older."

"One less thing to worry about I guess." Steve said.

Five months later, I reminded Steve that Jonathan's appendix was gone. He said he'd never realized that. [NOTE to any medical professionals reading this: we really really probably won't remember 80% of what you tell us when we're shocked parents in a stressful situation. And the 20% we do remember, we'll probably mis-remember. So keep telling us, patiently, over and over again. We want to know, we just... don't really have the brain cells for it now.]

But back to the TPN.  He'd be dependent on IV nutrition for the next few weeks, until we could start feeds. Probably for the next few months, until his bowels healed completely and the two segments (thankfully they only had to cut out one part) could be stitched back together.  So he needed a more permanent way to get IV nutrition.

That was the next part of the consult. "We're going to try to place a central line while he's still in surgery" the surgeon said. A central line is like a more permanent IV port. It's stitched in, and requires two incisions.

He shook our hands and went back to work with our son. Now that he'd taken out the dead bowel, he would put in place something to sustain him while he healed.

We went back to the waiting room, glad to give some good news to Carl and (in turn) the rest of the world.  At only 10% of his bowel lost (or 17-18 cm total), he could still grow. He might even grow normally.  And even if he didn't?  We were all tall. He could handle being just a bit shorter.  He just had to make it a few more days so his body could heal.

The surgeon came back not too much later. "We tried," he said, "but Jonathan has too much edema. We can't get past all that third spacing [water retention] to place the line. We couldn't get a clear image on the chest, so we didn't even try. We tried the leg, but it didn't work."

When I got back to the room, I couldn't find the supposed incisions on his leg.  A year later, they're very visible. Scars grow with children. I learned that. And what was once two barely noticeable scars less than an inch apart are now two noticeable scars two or three inches apart. But he survived.

Although we still had the problem of no permanent vein access.  We hoped his unicorn IV on his head would last.

Steve stayed with Jonathan. I dropped my brother off at the airport and picked up the girls from school and went home to make dinner.

We'd made it another day.

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