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.

Week 32 (gestational) - FINALLY a good week.

One of his last days on a conventional vent - and finally
he's lost all that water weight.
Looking so much better.

One of his last days of showing off his beautiful brown hair
before it was covered with a CPAP hat.

September 15 through September 22, 2012 (A year ago) - Things were looking up for Jonathan. We'd finally gotten a good breeze, crisp fall air filled our lungs after a summer of unusually high and suffocating heat.  At least that's how I felt. There was a bit more spring in my step as the weather turned.  We were nine weeks into this NICU thing, and finally we'd found our stride. It was still rough, yes, but he was still alive, and that was enough.

My girls were both at school -- Ella thriving in kindergarten and Mimi enjoying preschool.  I was back at work, and while it was tough to catch up from eight weeks of maternity leave, I was so glad to see the students and my coworkers again. We were all adjusting to this new and busy normal.  Steve was taking the mornings he wasn't teaching (Tuesdays and Thursdays) to sit in the hospital room and work on his computer from Jonathan's bedside. He'd sanitize the computer before he'd start to work, and he'd scrub in again before he'd touch Jonathan, but the ability to answer emails in J's hospital room allowed him to be around when the doctors came by.  Also, when the nurses had a moment, he could get two or three to help him manipulate the vents so that he could cuddle with the little guy.

One of his first days on CPAP

Reports from the NICU were positive. I'd call Steve or the nurses every other time I pumped, so a few times a work day.  After his NEC/bowel surgery, things had been rough for a bit. He kept retaining fluid, and once they did start him on my milk again, it took him a while to digest it, leading me to be so afraid of another occurrence of NEC. Dilating the bowels helped get things going again, and ever since that first overly celebrated poop, three weeks after his first NEC surgery and about three or four days after we started him on food, things had been going great.  His ostomy site looked good, his central line looked good, and I was able to hold him nearly every time I went in. To me, that was worth the world.  Except, of course, that I had a cold, so I didn't go in as much, and when I was in, I was wary to hold him. But STEVE could hold him, and again, THAT was something.

Also, while the previous week he'd fluctuated between needing and not needing the conventional vent, this new week brought new strength to Jonathan's tiny lungs. He was placed on NIPPV, a CPAP machine that gives continuous positive airway pressure as well as puffs of additional pressure to stimulate breathing. After a few days, he graduated from that and was breathing with only the support of a CPAP (Continuous Positive Airway Pressure, in case you missed that the first time) machine. A CPAP is what is worn to bed for those with sleep apnea. It seemed like "no big deal," a step in the right direction. He was breathing on his own.  The machine was a quiet bubbler that, unlike most NICU machines, actually provided a bit of ambiance to the room. On top of that, we'd started being able to put Jonathan in clothes. A friend had knitted a sweater that worked perfect to cover up his ostomy while still providing easy nursing access to his central line (nurses had to observe that on a regular basis) and ostomy site.  If you want to make a NICU baby a cute, cuddly, humanizing outfit that also works well (for most everything except arm IVs) I recommend this pattern.

On the 19th of September I went in to help with Jonathan's evening cares. He was two months and two days old. And I got him mad.  For the first time since the day he was born (when he squeaked upon entering the world), Jonathan cried an audible cry. He had opinions and he was voicing them. I couldn't have been prouder.  Yes, he was mad at me for pulling a cord. But he was well enough to BE mad. My heart was a bit lighter that day. I'm sure I smiled at everyone as I left the NICU. "My son was mad at me. He was screaming these little squeeky screams!" I'd have said, if they'd asked about the silly grin. "Isn't life wonderful?"

A year ago he also finally lost all his water weight. He got down to 2 lbs 6 oz. His highest weight had been 3 lbs 11 oz. He was carrying over a pound and a quarter of water on a two and a quarter pound frame. Poor kid!  And then, just to add to my delight, after we started feeding him milk again, he started gaining. By a year ago, he was twice his birth weight at a hefty 2 pounds, 10 ounces.

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Tinkerbell's fourth birthday

A year ago we took a break from the NICU the weekend of Mimi's fourth birthday. We drove to the hospital, visited baby J, then drove up to great grandma's house several hours away for an over night. Grandma joined us at her mom's house, too. We'd only go over night, we told her. We couldn't stay for a weekend as usual, because we HAD to see Jonathan once each day. It was all we could do, it was our duty.

Great Grandma's house is near a lake. It's one of the great lakes, so it feels more like an ocean. Add the cool fall air and the warm sun, and it's nearly perfect.  Or it would have been. I slept in the basement most of the time, trying to rid myself of the cold.  Steve and the girls went to look at the lighthouses and stones along the beach. Mimi talked about that birthday with her two grandmas for the whole next year. How she'd gotten to see Grandma and Grandma, and how she'd dressed like a tinkerbell.