The second to last NICU surgery

I'm hungry, momma.

Looking back a year we encounter a simple fact. A bigger preemie is not a healthier preemie. JAM had finally hit the weight at which the doctor would be willing to do an ostomy reversal - a full 2 kilos. They'd cut his intestines apart over two months earlier and removed the bowel that was dead from NEC. For those two months his digestive track had ended in an ostomy -- a part of the bowel that had been brought to the surface of the skin-- and he had a bag for collecting the waste. Ewww, gross, right? (There's a reason his belly is covered in these pictures.) Actually, it wasn't too bad. It meant that for two months we never once had to change a dirty diaper. But we didn't want to go home with it. We'd been waiting for the relatively simple surgery to hook him all back up. ("Simple" as in "much less scary than the first time.")  He was finally two kilos, and the doctor gave us a "go ahead."

What do I hear? Is that impending surgery?

The surgery was delayed several hours for another patient who had an emergency. I remembered when J was that emergency, and so I didn't mind at all, and said a tiny prayer for the other patient. I took the time before transport to take many many pictures of my son. They had removed his feeding tube at his last feeding the day before, and so he had absolutely nothing on his face. He looked good, funny even, and the plumpest he's ever looked.

The surgery itself didn't go well. A year ago I spent the night at the hospital for the first time since my son was born. His recovery wasn't what was expected, and I wasn't comfortable leaving him alone.

I had to attend the surgery (or, okay, I just stayed in the waiting room) alone because Steve was too sick to be at J's bedside.  We figured that the risks were already great enough, we did not want to introduce Steve's germs to the NICU scene.  Here were my thoughts a year ago:

Written Nov 7, 2012 1:28pm by Laura M

Jonathan is currently in surgery...

The hardest part, I thought, would be pacifying a hungry baby, since he's been off all food since midnight.  He was a little fussy at times, and awake most of the morning, but not too bad.  He even pulled out his own IV (he had an IV put in last night because he needed a blood transfusion pre-operation), but didn't do much more than squirm while freeing himself.

Who needs IVs?

But then the transport bed came.  It looks like a little plastic coffin with side holes for your hands to go in. It's always been hard to see him go in to it.  He's been in it three times before today -- once for the NEC surgery, once to insert the broviac (central) line, and once for his eye operation.

He must have remembered the eye operation.  I can't imagine him remembering the other two operations because they were so long ago (for him) and he was so out of it.  But he CLEARLY remembered the transport bed.  He started crying the moment we put him in it.  You know those newborn baby cries?  Those robust cries that babies give you just after birth to tell you they aren't okay with the way they came in to the world?  The loud and angry yells that gain you an apgar score of 10?  Well, he proved to me today that he has those in him now.  He cried, no SCREAMED, until he had a bradicardia event.  In other words, he cried until he passed out, then woke up, realized where he was, and cried until he passed out again.  It was REALLY hard to see.  I finally propped him up on his side a bit (he feels he has a bit more control of his world when he's not flat on his back, he can move a bit more when he's a bit on his side) and then made sure I had his hand and that he could see me.  That calmed him down.  He was then fine, and even smiling, until the transport bed started moving.  Once we hit the elevator he started fussing a little.  They had me come with on the trip down the staff-only elevators since it was clear he was happier with me at his side.  I held his hand and maintained eye contact with him, talking to him about how this wouldn't be as bad, and then let him go in to the operating room.

It will be bad, but not as bad...

In  much happier news, he gave me his first real smile today.  Long before the docs came in to take him down, he looked at me, recognized me, and gave me a grin.

Now we wait for about an hour and a half (so he should be out within the next half hour) to see how things went.

Steve is home sick today.

Thank you for your prayers!

I'll be adding photos soon.

Written Nov 7, 2012 3:28pm by Laura M

J came out of surgery ok, but with a severely elevated heart rate (220bpm). 

Written Nov 8, 2012 1:53am by Laura M

J's heart rates are down to the 160s now, but only because he is so heavily sedated that he's not really aware of anything. This comes at a cost. He's not taking any breaths on his own. His vent settings have recently been increased to help him with poor CO2 output (bad blood gasses).

I guess one comfort is that he is so out of it that he thinks his vent tube is a pacifier. I was worried he'd be mad at us for putting him back on a vent. Instead he is just sucking away.

I'm staying the night with him. First time sleeping in the same building since the week he was born. First time ever of rooming in.

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He was so sick, so uncomfortable. I was scared. I didn't like how sedated he was, but I didn't like the pain he was in. He gave me silent wails, his vocal chords back to being pressed flat and unusable by the breathing tube down his throat. He was agitated. He didn't understand.  And when he was finally relaxed, I was scared. He was so out of it. I remembered the way that morphine had played with his system before, slowing his bowels. I worried about what this would mean.

The doctors didn't want anything to build up, either. In place of a feeding tube, they gave him a repogle - a reverse feeding tube of sorts that suctioned contents out of his stomach. Even that simple machine stopped working for him, though, and started to suction the side of his stomach wall instead, creating more pain and discomfort. He was a mess.

The road changes, but it doesn't always get easier.

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.