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..."
"SH!"
"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...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.

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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.

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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.

Surrounded. A bit of grace in difficult times.

You know what the most redemptive thing about last year was?  The feeling of being surrounded.

When we had our second child, we had just moved into town. A friend moved with us -- her husband (also a good friend) had gotten a job at the same place as Steve -- so we weren't entirely alone, but I felt isolated.

After our move and after Mimi's traumatic birth five years ago, we all got the sickest we've ever been. Almost as soon as I recovered from my c-section, Ella got the first of what would be four ear infections -- all in one winter.  We finally got tubes in both ears. Steve had five bouts of pneumonia (no, not just bronchitis -- full blown pneumonia) and I had strep so many times that I ended the season in April with a tonsillectomy.  Only Mimi seemed unscathed, although she too got her fair share of sniffles that winter.  I joked with Steve that if he didn't shape up, they'd talk about removing his lung. Ella, after all, had had surgery, and so had I.  He came back from his pulmonologist and said I wasn't as far off as I'd guessed.  It never came to that, but things were bad.  (Martie, I know you want me to fit in the story about the fan blade and garage door here - but I can't. Not only would the story take too long, but that would be me airing my lowest-of-low moments from that winter, and I'm not sure the world is really ready for that.)

We found a church home about three months in, but we were still so new. I spent a lot of Sundays crying to songs in the pew because (a) I felt alone and (b) I was alone, because Steve was at home battling another round of pneumonia. At one point I was so embarrassed by my lack of spouse, snotty nosed kid, and tendency toward tears that I purposefully went to a different church so that I wouldn't have to answer questions again. Well meaning people who were virtual strangers knew that my husband wasn't there, and I didn't have the energy to look like I was alright with it.

I wanted friends, and I wanted folks to surround me and celebrate with me the new life that was my little Mimi. I wanted folks who knew us, and knew that this life of illness we were living wasn't normal for us. We weren't making this up. We had left a terrifically supportive community in North Carolina, and I feared I'd never get community like that again. We broke hospital visitation rules with the number of people that came to celebrate Ella's birth.  After Mimi's birth it was just me, Steve, and then eventually Ella and my mom who had driven in to town. And our two friends who'd moved with us. And a few parents of friends we'd had in North Carolina, but they didn't want to intrude, and we barely knew them.

I cried when the hospital staff presented me with a hand-made hat for Mimi, a donation to the the hospital. To me it signified that someone cared. Someone, a stranger, was glad that this new life was here, and wanted us to feel special.

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I had naively decided that this third child would redeem that horrid year. I wouldn't feel alone this time, I wouldn't have a traumatic birth. This is part of why I wanted so badly to deliver VBAC. We'd finally gone through one or two winters without getting sick, so things would be better. I had friends and community now, so I wouldn't feel alone with this baby.

A year ago I was telling this all to Cindy, the stranger-become-friend who was on bedrest down the hall from me and delivered her micro-preemie less than a week later. She is a woman of God and an inspiration. I was having horrid hospital coffee with her in the family room of the NICU.  "I wanted this birth to redeem all that" I said, "but I didn't have that easy third birth that I wanted. It was even more traumatic than Mimi's birth. But at least this time we're not alone.  We have so much support, so many people praying for and remembering this little guy."

"That experience has been redeemed" she said.

And as I thought about it, she was right. We didn't get the easy birth we'd wished for, but we were surrounded in ways we'd never experienced. You'll see that throughout this blog. Our friends hurt with us, and upheld us, and prayed for us, and spontaneously sent us gifts. We were worn, thread-bare, but we were not alone.

We learned much about community, and about the Christian community to which we belonged. We learned what it was to sit with someone who was hurting. I had known that sitting with a hurting person was never comfortable, I always felt so awkward, like I stumbled over all the wrong word all the time. Like I didn't care enough or I cared too much. Like I could never get it quite right.

I learned from being that hurting person that all that didn't matter. The fact that the friends were there, the fact that they cared, that is what mattered more than the words or fumbles (or, heaven forbid, inappropriately placed spiritual incantations).  I would take 1,000 foot-in-mouth comments, because the fact the wrong thing was being said meant that there was someone saying it. This time we weren't alone.

I don't state this to say this is why he came so early. This is not tragedy making up for hard times. But it is a bit of grace in the hard times.  And it was a lesson in how to love and be loved in hard times. Those lessons are important.

If you have friends who are preemie parents or parents of kids with cancer or just going through a hard time -- they can't be loved on enough. They will have nothing to give, they may not even have energy or time to spend with you, but do not forget them. It is a long road, and they need every ounce of support you can give. Just be sure your support comes with forgiveness when we don't send you the thank you card or don't have the energy to show just how much it means to us. Trust me, it means the world. You touched us, even if we're too worn to show it.

Day 8 - Of babies, plants, and Ph levels: growing in hard conditions

When we bought our first house (our only house), we bought it for the spacious back yard. It was February. The house we were renting had had a patch of raspberries in the back yard, and fertile soil all around.  But the yard was small. We figured we'd have the same good soil at our new house only a few miles away, and lots more of it. After all, the land it was on had been farm country not too many decades before.

Except that they'd sold off the top soil.  We discovered this in May when we went to plant. We lived on clay.  A nice large lot of clay.

So I've spent the last four and a half years amending that clay. We built a raised bed and added soil. We invested in a composter and have slowly turned our kitchen scraps into more soil.  We have bought hardy plants like raspberry bushes and mint that will grow anywhere. We've learned to make it work.

And we've made some mistakes.

Like me mistakenly thinking that blueberry bushes would be very nice along the side of the house, they'd give such a nice red foliage in the fall and berries in the spring.

Foliage, yes, but berries, no. Blueberries don't like clay.  I'd known that much and dug them a pit of peat moss. They also like acidic soil. You know, like the kind of soil you'd get in a pine forest. Not the alkaline soil that surrounds a house due to the lime in the foundation.

After two years of amending the soil in the bed by the house to make it more acidic and less alkaline, but with no berries to show for it, my daughters and I decided to do a science experiment and see how acidic the soil was.

The answer: not at all acidic. The measures we'd taken hadn't lowered the alkaline levels at all.

So we made a new trench of peat moss in the back yard, under where a pine tree had been just a few years before. We replanted the blueberries. The first year after the replanting we had a few handful of berries to show. This year the rabbits thought it would be helpful to trim the bushes for us over the winter, so we have no berries to show. But the plants (even with the trimming) are healthier. And next year, I am hopeful that we'll finally bring in a crop of berries.

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Hang in there buddy! J at 8 days old.

About a year ago I learned we have Ph levels too. And Jonathan's were off. In the NICU they'd test the levels in his blood.  They then design his total perenteral nutrition (TPN) to help keep the levels where they wanted them. TPN was like Jonathan's IV version of Gatorade. And without it, he wouldn't have grown.

The girls and I had had a little tablet, soil, and a small vial to test the soil. I don't know how they tested his blood, but the results were the same: the conditions weren't great for growing, so we needed to find a way to help improve growing conditions.

And for both my berries and my bitty baby -- it has taken time. Longer than if they'd started out in an ideal environment.

But both have proven to be hardy.

I guess we are more like plants than I thought. I am amazed by modern medicine. I am amazed by science.

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July 2013 -- a year later

Ella is my 6 year old. She coped with the insanity of last year by educating herself. She used all available resources to figure out as much as she could about Jonathan's life and care.

The result was one sturdy six year old who is terribly interested in medicine and science.

We saw a "Squishy Human Body" at a specialty store last weekend. That got Ella and her twelve year old cousin to talking. Ella wanted that squishy human body SOOO bad, so that she could learn all about anatomy and practice doing surgery. Bec thought it was a disgusting proposition. "Ewww" she said.

"What?" Ella replied, "It's just blood! Everybody has blood. Some people think it's disgusting, but we need it to live, so I don't think there's anything wrong with it. It doesn't bother me!"

Today she asked if she could watch a YouTube video with me on how to change his feeding tube. I said no.  Not because I am afraid of exposing her to that sort of thing, but because I'm afraid that if she watches the video, she'll think she can change her brother's feeding tube herself. Thing is, she probably could. But let's not chance it.