The Philosophy of Trees -- Retinopathy of Prematurity and Perception

I don't remember much about my undergraduate philosophy course, but I remember that my instructor had been dreadful.  He had assigned a half a dozen books, and I had been excited for the class. I loved philosophy. I loved thinking about what was real or false or concepts of how the world worked.

My classmates didn't feel the same way. They were taking the class because they had to. And they quickly discovered that our instructor was very easily brought along with them on unnecessary tangents. And tangents meant less material to learn and less would be on the test, because our instructor did not live by his own syllabus.

So we started with Rene Descarte's Meditations. A good place to start. And it was the only book we really read.  By the second or third meditation, our class had discovered the aforementioned secret, and they were all about continuing class discussions on topics long after they were dead.

Don't have a picture to illustrate this, so here's a picture
of JAM with a famous philosopher.
Bonus points if you can recognize the philosopher.
(Don't worry, not the philosopher who taught me.)

And so we spent somewhere between three and five class periods -- that's OVER A WEEK -- on whether the color I see as red is the same as the color you see as red, or if what I see as red you would perceive as green or blue or purple.

It was dumb.

I would not be majoring in philosophy.

But a year ago I decided I knew the answer to this ridiculous question from a decade earlier.

Yes. Yes. The color orange you see is different from the color orange I see. I know this, because the color orange I see is different from the color orange I see. At least, it was that afternoon. I was driving home from the NICU. The trees had all turned into a fantastic display of reds, oranges, greens and deep purples and browns. The landscape was a fireworks display. And the display had gotten brighter.  It wasn't because things were sunny.  On the contrary, things were back to uncertain. But these colors -- they were so alive. More alive because I was noticing them. I didn't take sight for granted any more. I wondered if my son would ever be able to indulge in the autumnal feast of colors.

Jonathan a year ago, recovering from eye surgery.

My perception of the world had changed.  And it wasn't just the leaves on the trees.  When the leaves fell off, the very trunks of the trees became not wood, but living vessels.  Some were ROP trees, like the thick gnarly wood of crab apple and oak trees.  Others, like the tall slender lines of the elm trees or the young maple tree, represented the vessels in the eye of normal babies, full term babies.  Those trees knew how to grow into the sky.  They grew straight, with many new twigs coming off each branch. The apple trees tried hard but couldn't find the right path. I pictured them pulling the weight of the earth up with them, detaching themselves because they couldn't grow, couldn't push to the sun.  They'd never be able to see.  You could tell by the lower branches. Dead, if not trimmed. Dying because they saw only shade.

Jonathan was now post-op from his eye surgery. The surgeon had said he'd done a very thorough job, zapping as much of the protein in the sky of Jonathan's eyes so that the branches of the vessels could grow tall and healthy, filling his eye and keeping his retina firmly planted at the base of it all.  They'd be dilating his eyes at least two times a week for a few weeks to see how those vessels grew, to look out for stage four or five of ROP+.

I walked across our beautifully wooded campus at work. I again admired the bright colors of the leaves. Maple leaves are my favorite. But I also loved the leaves that turned a deep purple. My foot crunched on a dried brown oak leaf, and I smiled. This. This was a gift. The trees don't just flame, they crunch.

My son may never see a burning bush. He may never see a hill side dotted with reds and greens and yellows and browns as an entire forest erupts into a symphony of color.

But he will crunch. He will feel the leaf under foot or in his hand. And he will wave that hand and crunch those leaves, and maybe even toss them into his sister's hair.  He's going to live now, you see. I was becoming more and more sure of it. And if he lived, he was going to live a GOOD life. I would see to it.  It would be colorful, even if he would not see color.

The first eye exam post-op was neither positive nor negative. The ROP had not reversed. But it hadn't gotten worse either.  We kept waiting.

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Spoiler alert.

This picture was taken a few weeks ago.  Today Jonathan can both see the splendor and feel the crunch of the leaves. He's nearsighted and he has limited peripheral vision from the scarring of laser eye surgery, but his central vision was preserved.

Day 27 - Hearts and Kidneys

A year ago I was so worn.
I'd stopped updating people on Jonathan's daily progress.  It was too hard. Too hard to write, too much to process. I was so tired.  We all were.

A friend (Thanks, T-dawg!) had sent us a pair of monogrammed backpacks, one for each of the girls.  I was so grateful, as Ella was starting kindergarten and I had not had time to buy her much of anything. My mom had driven me and Ella out to the store (remember, I still couldn't drive at this point) so that we could buy her a first day of school outfit. Mom had asked over and over if it was really all that necessary for me to be there, saying she'd be happy to do the shopping with Ella herself. I had put my foot down, though. I may not be able to walk well, but I WOULD do something right by my girls. I hadn't been much of a mother, and I think I thought that this trip to buy a first day of school dress might make up for it.

A year ago yesterday I broke the few-day silence and wrote this on JAM's care page. It was the beginning of what would be a very bad month, though I didn't know it at the time.

Written August 12, 2012 2:57pm

I'm breaking my promise not to write for a while. Our at-home family has had a good weekend, I'm feeling almost normal, and tomorrow (in addition to it being E's first day of kindergarten), big decisions will be made for Jonathan.  Since this is the easiest way to tell family & friends about Jonathan's care, and since I'm feeling alright, I write.

1. Jonathan's PDA (patent ductus arteriosus) has not closed and seems to have opened more.  If you don't know what that means and want to understand, see a short & sweet explanation here.  (This is his heart vessel thingy.)  The doctors have to make a decision on whether or not to do surgery to clamp the vessel.  They are (at least as of last week) split on this decision.  On the one hand, this could help prevent or make better lots of ills (including issues with his lungs and heart)  On the other hand, it's surgery on a wee little guy, and if closing this PDA isn't going to do much good (if it's a small leak closing it might not help too much) -- if it isn't going to help things significantly -- it should be avoided until a later date.   They are doing several more scans today, and will be reviewing them tomorrow to determine the best course of action.

2. Jonathan's kidneys aren't working so great any more.  He's had lower urine output since getting put on the starter TPN, and they are trying to figure out why.  This may be related to the PDA, may be just because of severe prematurity.  In essence it means that he isn't doing so hot on just my milk after all.  They're increasing the amount of starter TPN that he is receiving in hopes that this will help.  And they are doing scans on his kidneys.

3. Jonathan's blood sugars are not what they should be. There's too much fluctuation.  They are preventing this by slowing his feedings from taking 15 minutes to eat to two hours to eat.  This seems to be helping.

4. Jonathan is still having vent issues. His cuddle time with Steve today (first time) was cut short because after a half hour it was clear that they could not find a sweet spot for his vent and his leak was out of control.

Overall we are amazed at what these doctors can do and how early they can catch things.  It is fascinating to watch (okay, a little scary too, we wish things would always improve -- but it's good to see how well they are caring for him).

Thanks for your prayers,

.

It is so strange to read all that, and then look at pictures from a year ago today.  We were, indeed, living split-lives. While our son was critically ill in the neonatal ICU, we took these pictures of our daughter:

FIRSTDAYOFSCHOOL FIRSTDAYOFSCHOOL!

E next to the apple tree we named after J

Mimi watching from a tree.
Some day I'll get to go to school, too!

Of apple trees and surgeries

[A year ago today I was still blissfully pregnant.  I had had no serious issues with the pregnancy.  This blog, thus, glances back at last year, but then settles in on the events of today, June 26, 2013.]

Two thousand twelve was an abnormally warm year. Winter broke into spring prematurely, practically skipping the cold season altogether.  In mid-January not only was the snow gone, but I was transplanting blueberry bushes in the back yard without a jacket on.  By mid March the apples and cherry trees had all decided to let their buds pop.

An early spring is dangerous territory for fruit farmers.  In late March and early April the hard frosts returned, and the cherry and apple blossoms were lost.  The fruit crops were decimated.

Naturally,  this is the year we decided to buy an apple tree.  Two, actually.  I guess we weren’t deterred by our neighbors’ lost crops.  We were drawn to the promise of applesauce made from Cortland apples – just like mom used to make, and the memory of the crunch of Honeycrisp apples, one of my favorite to eat.

So in late May 2012, we packed us all into our small car and headed to a nursery.  I’m not sure what we were thinking, buying two trees without a truck. Turns out trees don’t fit in a standard size trunk. Thankfully my pregnant belly was not too big, so I could wedge the two pots at my feet as Steve drove home. The branches of the trees went over my shoulder and right between our two girls in the back seat of our Saturn. To make things more interesting, we stopped for fast food on the way home. Two kids, two trees, two
adults, and my pregnant belly. Navigating the distribution of food to the back seat with a shrub over my shoulder was quite the adventure.

The trees weathered an abnormally hot summer well and, one year after transplant, are doing great. We were excited to see that the Cortland budded in the spring. Usually it takes two to three years before seedlings produce buds or apples.

When many of the buds began to grow into apples, cross pollinated with a neighboring crab apple, I got very excited.   There were two dozen apples growing on that small tree!  I told my colleague, a gardener herself, the good news.

“You know, I hate to say it,” she said, “but you’re going to have to prune off some of those apples if you want the tree to grow well.”

“I know,” I replied.  But I didn’t want to know. I wanted it to keep doing what apple trees should do – producing fruit. Taking off fruit – that’s not right.  Fruiting is what an apple tree should do.

But not this season. The tree should be working on roots and not apples – and the branches really aren’t that strong right now. I need to take a few steps back in order for the tree to keep moving forward as it should. The Honeycrisp was doing what it should do – growing strong before trying to bud. The Cortland needed to do the same.

A few weeks ago I finally pruned off a half a dozen apples. This is my compromise. I have a difficult time letting them all go. Can you blame me?  The birds took care of a few more, and so now only a dozen apples are being allowed to grow.

It’s a hard lesson, though. Knowing that the steps backwards are necessary doesn’t make the steps any easier.

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June 26, 2013.  Today is the day of Jonathan’s eighth surgery. You’ll hear about the other seven as I look back over the past year. None of them were easy. Like the pruning of the apple tree, they all seemed like steps backwards. For half of the surgeries, my son was already breathing on his own, but he had to be put back on a vent when he was sedated.  That means a machine breathed for him.  Once it set him back for two weeks of intubated breathing.  The last time they were able to remove the breathing tube before I saw him (“extubate” him) but he remained on oxygen through a nasal cannula for about a day. I know it could have been much worse, it usually is for micro-preemies, but that didn't make it any easier.

When I finally saw my son’s full face with nothing on it, for a brief moment at three months old, I felt like I was meeting him again for the first time. I never wanted to lose that.  It isn’t fun to see him change from a boy full of energy to a lethargic sack on the hospital bed.  Prior to the last surgery, three months ago, he was rolling from his belly to his back.  Then he stopped.  He only recently started that trick again.  These things are hard.  This season has been hard.

But this is a season for pruning, right?  Organ by organ we are making up for the early spring, for the premature birth that nearly took his life. His roots are deepening. He is getting stronger.

Come to think of it, perhaps I’m gaining roots too.  I’m certainly not growing fruit. I like to give, to be involved, to help others. The two years before 2012 I was a full time student, full time parent, and a full time employee.  I was working with refugees and college students.  I was training for a triathalon.  It was a good life. Busy, but very good.

Now I felt like it is an accomplishment to get a load of dishes clean and a load of laundry washed in a day.  Despite the fact that Jonathan has been sleeping through the night for four months, I’m still exhausted.  Always exhausted.  A day talking to people leads to a day of sleep to recover from all that talking.  I’ve started running again, looking for regained energy, but every step of the run is a struggle.

I have had to dig deeper. It is all right that I am tired, that I am worn. This is what I tell myself.  This is a season for roots, not a season for fruit.

My son has come through much.  We have come through much.  And, in some ways, this gives me greater anticipation for the years to come.  The fruit, when it comes, will be that much sweeter.  At least that’s what I tell myself on days like today, an hour and a half into surgery, when I’m still waiting to hear how it all went.  At the very least, I have learned how to grow.  I have not been able to rely on my own strength, and so I have had to accept help, I have let my roots grow deeper. My soul home had to be moved off the sand.

"Let your roots grow down into him, and let your lives be built on him. Then your faith will grow strong in the truth you were taught, and you will overflow with thankfulness."  Colossians 2:7