Saturday, November 16, 2013

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.


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.

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