Friday, October 25, 2013

Day 97: When the NICU race gets long and a full-term baby is only 3 pounds.

About a year ago, October 22nd, we were exhausted. Mimi, our four-year-old who had been potty trained two years earlier, had reverted to bed-wetting and having daytime accidents again. Ella, our five-year-old, explained to us that she understood she wasn't in swim classes this year because of Jonathan. We told her it wouldn't always be like this, and that if she were in the hospital, we'd be doing the same for her. We cuddled. That helped her understand.

On our better days we dosed out extra cuddles for our girls to help get them through. While we couldn't be there for them like we used to, we tried hard to have the time we were there be quality parenting time. Other days, I retreated to my bedroom, closed the door, and claimed privacy for pumping. I was strangely grateful for the excuse to sit by myself. I'd stare at a dumb game on my smart phone or read a book on my kindle. Sometimes I would pump in what would someday be Jonathan's room -- my old bedrest room -- where the hospital bed has been removed, but a TV and chairs are still set up -- and I'd watch something mindless on TV. It wasn't that I was trying to get away from the girls, I was trying to get away from the mess of dishes piling up in the kitchen or the cluttered corners and the noise. Yes, it was the girls creating the noise, but on a different day where life wasn't so completely out of control, I would have been fine with the auditory chaos. In this world, though, I had a hard enough time processing the essentials. So while Steve cooked and the girls created imaginary worlds out of blankets and couch cushions, I hid.

I was exhausted. Although I'd finally stopped waking up at 3 am to pump, I was staying late at the hospital, working full time during the day, and only guaranteed to see my children in those brief and hectic hours first thing in the morning and at dinner time. Those were also the only times that I'd see my spouse, unless we managed to sneak in a lunch date. Conversation had disintegrated into pelleting each other with words.  When I finished pumping and rejoined the family in the main area of the house, conversation would be anything but fluid.

"Are you going in tonight or me?"
"I'm not sure how are you..."
"Mommy, can we go rollerskating toni..?"
"Sh. Talking."
"But mommy, but mommy, um, but mommy, what can we..."
"I'm not sure if I should go in. I've still got a little bit of a tickle in my throat. I think it's allergies, but..."
"NO, Mimi, do NOT draw on my paper!  That's MY coloring book!  Mommy... I got this coloring book from Johnny B for my birthday. And now Mimi is coloring all over it!"
"But mommy, it was... um, but mommy, it was..."
"NO! You're going to RIP it!"
"... just to be sure, maybe you should go in. I'd hate to give him a cold."
[Tears] "Mimi HIT me!"
"But, um, ELLA! but, Ella pulled the book..."
"Did you call the NICU today?"
"...pulled the book out of my hands. And. And. She hurt me!"
"But this is MY coloring book, Mimi."
[High pitched Mimi screams]
"Yes, they had to put him on nassal cannula for only a couple of hours."
[Screams turn to shrill cries]
"Ella, go to your room. Mimi, go sit on the couch. I am SICK of you girls fighting with each other. We are trying to talk here. If you can't behave, I'm taking away the coloring book for good."
"But, can we go rollerskating still?"

Life at home was anything but calm. We weren't thriving, we were surviving. The hospital routine, the "new normal" as I tried to call it, hit us all hard. Ella had taken on all my bad survival habits.  She had forgotten that good people wait for others to respond and ask in kind voices with pleases and thank-yous. She took on my snippy attitude along with my short fuse. And then, like all children do, she characterized it. She became like a blown-up, exaggerated version of myself, but in a  five year old form. In short, she became an early teenager, complete with the rolling of the eyes and self-assurance that I just didn't get it and never listened.

In her defense, she was probably right. I probably didn't listen. As you'll see, their dad, my spouse, was much kinder.

If you didn't catch it in the early conversation, the girls were asking to go rollerskating with school friends. The event was free, sponsored by the school. The guilt of Eleanor's earlier comment about swimming hung heavy. I'd be able to get them home before Jonathan's care time if I rushed, and maybe then Steve would get a rest in and not get sick.  Rollerskating was a disaster. Ella spent the whole time learning how to fall while Mimi, younger but in more stable skates, zipped around like a pro, only falling when I took the camera out.

That said, Steve got a chance to rest. It wasn't long enough for the girls. "We want to skate LONGER" they protested as I pulled them out of the rink about an hour and a half after we arrived. I reminded them that I had to go take care of Jonathan. I dropped the girls off with Steve and rushed off to the hospital, grateful for the break.

Steve then exercised his great kindness. He carried the girls over a minefield of toys and dirty clothes, and tucked them in to half-made beds. Then he pulled up their desk chair, the plush blue that I'd had as a child, and he read them a Bible story. On nights like this, they'd end in prayers, which would invariably both be too long -- almost like a narrative or story when Mimi would pray -- and also would invariably lead them all to remember me and their baby brother in the hospital. Steve would eventually cut them off, remind them that they could keep praying SILENTLY, kiss their foreheads, give them hugs, and turn out the lights.

37.5 weeks gestational age, 3 and a quarter pounds.
At the hospital I found a little calm. Jonathan was alert and happy. He was finally a full term baby, less than three weeks away from his due date. He knew it and he showed it. He was awake for longer periods, missed us when we weren't there, was hungry by care times and would let out small cries for food. These cries were becoming more and more audible each week as his vocal chords healed from intubation.  It became harder and harder to not be with him during the day. I was grateful that Steve could work from Jonathan's bedside a few days a week.

While Jonathan acted like a full term baby, but he still didn't look like one. At 37.5 weeks gestation, he weighed a mere 3.25 pounds.

JAM waves.
He wasn't growing well. It was a catch-22.  The doctors knew why he wasn't growing. It was the ostomy. His small intestines weren't hooked to his large intestines, so he couldn't absorb my milk as fully as he would be able to once surgery was done to "hook up his plumbing the right way," as I'd put it. But they wouldn't do surgery until he hit two kilos. He was on a mix of TPN (like an IV gator-aide), lipids (yep, IV fats) and fortified breast milk from me. We were trying to pack on the pounds, but at this rate, he wouldn't top four pounds until well after his due date. The longer we had to wait for that surgery, the longer he'd be in the NICU. The road stretched long before us.

That small size hindered us in other ways, too.  It meant no baby toys. Most full-term NICU babies start to get toys in their cribs to keep them entertained while they're awake. But in order to have toys - or go in a swing - he needed to be able to hold his own heat. He was still in an incubator because heat-holding was one thing he couldn't do yet. He needed more weight first.  Then they could "pop the top" and see if he was ready for a big boy crib.  Then they'd bring in a swing and mobile for him.

"He looks so wise," a NICU nurse said looking in on him through his isolette. "Look at him looking at us, holding in that pacifier. He's really thinking about things."
"He's a full term baby now" I said.
"It's hard to believe, he's so small that we forget sometimes that he's that old," she said. "You should bring in pictures for the side of his isolette.  That way he has something to look at while you're gone.

I pulled off a picture from Jonathan's magnet board in his room. It is one Ella had drawn on lined yellow paper. It showed off the fireworks we'd seen from the hospital room while I was on bed rest. Scribbled spheres in an explosion of colors.

I grabbed another one, too.  This was one Mimi had drawn. It showed a big box with a tiny baby inside. Then a bed with a squiggly-faced mom with frazzled hair. And off to the side, in the upper right, three smaller figures, one slightly larger than the other. The smaller ones had triangles for skirts and two stick legs coming out beneath them. The larger of the small figures was wearing pants and had glasses. This was our family photo, Mimi style.

I didn't want Jonathan to know the truth, so I put Mimi's picture back on the magnet board, out of his sight, and grabbed Mimi's rendition of the fireworks -- just as colorful as Ella's -- and taped them both to the side of JAM's isolette.

See?  The world is exciting. Colorful.  There will be less squiggly smiles someday. Soon, maybe.


Now a year later, the world is more colorful and exciting. JAM loves to smile and LOVES his sisters. Giggling with them is a favorite past time. Weight and height are still an issue.  He is wearing 3-6 month clothes as a 15-month-old. Our other kids as 12 to 15-month-olds were wearing 18 to 24 month clothing. We discovered that a zinc deficiency, possibly from the loss of 1/3 of his large intestine, is partially to blame. We've started him on a once a week zinc supplement to see if that might not help. The doctors have now ruled out all the scary possibilities, so we are hopeful that this is our solution. We are aware that this growth fight might be long and hard, but in the end, how much does it matter?

Like a year ago, because of his small size people believe him to be younger than he is.  Thus he looks very mature and thoughtful for his perceived age. A little gentleman.

A year later I've learned to listen more. Ella is relearning to be kind. Mimi is starting to lose her stutter.  Perhaps soon we shall become like ladies.

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