Sunday, October 6, 2013

Day 76: An unexpected surgery - Rush ROP+

October 1, 2012.  I started the morning pumping. While I pumped, I posted a few cute pictures of JAM on his care page site. I talked about how great he'd done the night before with breathing on his own and how very proud we were of him.

I then went off to work. I walked in so that Steve could take Mimi to daycare and then take the car in to the hospital and spend the morning with Jonathan. I hoped he'd be able to see his face free of CPAP, but doubted they'd remove the breathing support except for during the night cares.

I'd only been back to work for about three weeks. I was still working hard to get through the paperwork that had piled up from the summer of work I'd lost, but overall work was going well. I'd settled into a new routine, and we were making it work.

About a half an hour after I sat down at my desk, the NICU called.

"Your son has Rush ROP" the doctor said, "It's a fast progressing version of ROP, and so we want to do surgery now, today, before it gets worse."

I found out later that it's a rare form of Plus Disease, and that in this type of ROP, a child can go from stage two to stage four or five very quickly, skipping the in-between phases and becoming legally blind overnight.  Jonathan had stage two ROP in one eye, and stage three in the other.

"Steve's on his way in," I said, "He'll be there within the half hour."

I called Steve and filled him in, and then sat back at my desk and stared mindlessly at my monitor.

Steve was already driving in. If I had him pick me up, I'd be delaying the time between now and when a parent would be there. Jonathan needed us, but he only needed one of us.

And then there were the statistics. The doctor had talked us through ROP a few days earlier, he'd said that if it progressed they could do laser surgery on the eyes, and that in 80% of cases that would prevent retinal detachment.  This morning he'd changed the statistics. In babies with Rush ROP, the chances went down. Only two thirds had successfully avoided blindness with surgery. In one third of the cases, surgery was not enough.

If surgery didn't take, he'd be on his way to a bigger city, a different NICU. There he'd spend two to six weeks undergoing retinal reattachment procedures to preserve some sense of sight, even if it was only the ability to see some movement or color. He'd be blind, but some vision would be retained.

We wouldn't know right away what path he'd take.

I stared at my monitor and tried to image it.  Maybe I could work Tuesday through Thursday and take my unpaid maternity leave throughout the next two months, taking Monday and Friday off and spending the weekend in the NICU far away. I couldn't leave him alone, but I couldn't quit, and I couldn't be that far away from my girls for so long.

I calculated the hours. How many weeks would I be able to make this work?

There was no way I could take the day off to sit in a room while he had surgery. I didn't know how many surgeries were in his future.  This was the fourth in just over two months of life. Steve could be here this time. I'd have to save my days for a time when Steve wasn't available.

I contacted the care network at my church.  They'd reached out to me several times asking how they could help, and I'd never been able to find a good way.  "If this happens," I asked, "Would the church consider helping pay for the hotel or hostel stay in the city far away?" I had to figure it out. How could we make it work, with the extra gas costs and the extra expense of hotel stays every weekend?  They responded quickly. "Of course," they said. And they were praying.

I had to figure it out, because one more thing -- one more dreadful thing -- and I thought I would snap.

"If I prepare for the worse," I told a friend, "and his eyesight is preserved, then I haven't lost anything.  If I don't prepare, and he ends up being rushed to the city far away, I don't think I could take it."

And I wasn't kidding.

I considered packing a bag, just so I was ready to go.

I did all this to keep myself moving, because frankly, for the first time, I was ready to throw in the towel. This was hard. Too hard. I wanted to crumble into a ball on the floor and not move. I wanted the world to go away.

But there was no towel to throw in. Just a baby. And he needed me. He needed us. So we kept running.  The race was long and hard and every bone in our soul hurt, but there was no other choice.

I know it seems silly.  Compared to everything else he'd undergone, this was easy. This was blindness, not death. But it's like when you turn a corner, expecting to see the finish line, and only see five more miles before the next turn, without knowing what is beyond that. We were exhausted.

My mom suggested that JAM always took the road less traveled, and so she'd pray that he'd do the same in this case.

I told her she was wrong in her math. Two-thirds chance he'd be okay. Pray for the road MORE traveled.  Pray that he'd be okay.  We were ready to be done beating the odds.  We wanted to move into just being.

This post's content has not yet been edited. If there are errors, they will likely be corrected (and pictures added) in the next day or so.

No comments:

Post a Comment

I love to hear from readers. Please post your comment below or contact me at