Sunday, June 30, 2013

To circlage or not to circlage, that was the question

A year ago today Steve dropped the girls off with some friends for a day-long play date and came in to the hospital to be with me.   He didn't bring a camera.  It was June 30, 2012.

The night before we had been told about a circlage.  It is a stitch that, like purse strings, would close the open cervix.  We'd been given the option to do one or not to do one.  The doctor explained the risk.  The circlage may go wrong.   The prolapsing membranes, or the "sticking out of the baby's sac beyond the cervix," complicated things.  By putting in the circlage, accidental rupture of the membranes could occur.  My water could break, possibly introducing infection or leading to uncontrollable labor.  We could lose the baby.
He told us it was up to us to decide how to proceed.

Steve is an economist, which also means he is a statistician.  He works with numbers (especially the kind that look like greek letters) professionally.  "Is there a study that looks at this sort of thing that we could read?" he asked, "We could use some more information.  What are we looking at here?"  The doctor explained that each journey is a bit different, that there weren't any promises, that this was a hard case -- it was hard to know what was best for the baby and the mom.

An hour later he came back with a study of women who also had prolapsing membranes.  Half were treated with bedrest alone, half were given a circlage and indomethacin (a drug).  It was this study.  The sample set was small, but we poured over a graph and the numbers.  In the case of bedrest only, the mean amount of days gained was 20.  In the case of the circlage group, the babies gained a mean of 54 days.  But the bar graph of each individual participant in the study is what tipped the scale.  In the bed rest alone bar graph, we saw we might gain two to three weeks -- like the mean suggested -- but that didn't get us to an age of viability, and even if it did, all the bedrest-only babies were born prematurely.  With a circlage, a few babies were born in that first month, but then if they made it past the first month, many -- seven out of thirteen -- made it to full term.  A full term baby.  Oh, how I wanted that. This was his chance.

The doctor let us sleep on it, and when he came in for rounds that morning a year ago today, we notified him of our choice.  He told us we could have another day if we wanted, to think some more.  We said we were certain, a circlage it would be, and we'd prefer not waiting another day.  We wanted this risky proceedure behind us, and I didn't want to risk going back into labor. When it was done, we'd have a clearer sense of what the murky future might be, and we could step off this narrow fence between life and death.  For a time, at least.

But Steve didn't bring our camera.  "You have to have it," I said.   He didn't want to leave my side. "You must get a camera."  I said, "Maybe they have a disposable one in the gift store."

I might be meeting my 12 oz baby today, and I wanted a camera to take his picture.  If I wasn't going to know him, if I was going to have to say goodbye, I wanted to document every minute of his life so I could remember.  There wouldn't be that many minutes if the circlage went wrong.

While he was gone, I started doing some research on the computer he'd brought with him that morning. (Why had he not brought a camera?)  The nurse walked in.

"I wouldn't do too much research on a circlage" she said.

I am sure she didn't want me to talk myself out of it because one person somewhere in the world had had a bad experience, or because the images looked scary or something.  But we were firm in our decision, so that wasn't an issue.  Besides, that wasn't why the computer was out.

"I'm not researching that," I said.  "We don't have a name for our son.  I'm trying to find a good one.  If we're only going to know him for a few minutes, I want to be able to call him by name."

This time I did cry in front of a nurse.  I didn't mean to, but it just came out.

We thought about calling him William, after one of Steve's favorite grandpa, Grandpa Bill.  But Grandpa Bill had passed away recently, and we didn't want to lose two Williams back-to-back. We ran into a lot of that.  What do we call him?  What name honors him, regardless of how long or short his life is?  If he's born today, he will not live.  What if we then had another boy? 

We came up with a name moments before the circlage was placed, but I can't now remember what it was.  Maybe it was Samuel?  It doesn't matter, though. We ended up not needing a name that day.

By this point, our friends and family all knew what was happening.  Prayers were pouring in.  Thank you, friends.  I had to delete one update, because Steve worried it was a little too detailed, but the point of it all got out there anyway.  We were fighting for our son's life, and wanted prayer.  So prayer we got.  That meant the world to me.  I knew that we weren't alone, no matter the outcome.

The doctor decided to use general anesthetic instead of local. He explained that he wanted me as still as possible so that he could work with the prolapsing membranes. I appreciated that.

An anesthesiologist in the pre-op room -- not my anesthesiologist, but just one of the other ones hanging out -- declared loudly prior to the procedure that he couldn't believe they were putting me under general, that the best practice was local, that if he were in charge of my case, he wouldn't be using local.

I was grateful for my anesthesiologist, who clearly had a better relationship with the high risk pregnancy doctor, and who understood that sometimes "best practices" don't apply. I wished the other anesthesiologist would keep his opinions to himself.  No sense scaring the patient. That was me, I was the patient. I wasn't  in the mood to be scared or second-guess my doctor.

And frankly, I didn't want to be awake.  I wanted this procedure to be over, and I wanted to know we were all okay -- or not -- but I didn't want to know what was unfolding when I had no control over it and my only option was to stay as still as possible. I trusted them, and I knew this was our best shot.

Before we went in to have the surgery done, the doctor told me, "I only know what we saw most recently. If I get in there, and things are different, and I don't think I can place this circlage safely, you will wake up and nothing will have been done. I am going to be as careful as I can."

"Thank you," I said, "and thank you in advance for trying."

What felt like only a few minutes later, I woke up. I felt the stitches. I was dry. It was done.  Before the doctor said a thing, I knew where we were. I sighed in relief as the doctor said,  "The circlage was placed successfully."

I went back up to the high risk pregnancy floor with my husband. I had spend the morning sending instant messages to a girlfriend who had had a circlage placed early in the second trimester and carried her baby to term. Suddenly this was a new possibility. She sent me an instant message that evening. "Glad to hear your membranes did not rupture. The worst danger should be over now and it should be smooth and bored sailing I hope until 37 weeks."

I agreed. She was right. We had a good chance now, I thought.

"You just have to make it three weeks until he is viable and five until he will likely have no long term complications. You can totally do it. If the circlage does its job you will go to term.  I am so happy for you.  I was worrying all day."

This was just the pep talk I needed. Three to five more weeks.  I could do that, right? Yes, this was my first goal - three weeks, 24 weeks gestation. Then 28 weeks. Then 34, then 37. Each number meant a better life, greater chances. We could get there.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
June 30, 2013  Two weeks and three days from now is my son's first birthday. We didn't make it three to five more weeks, but we DID make it.  Praise God, who knits most of us in our mother's womb, but knit Jonathan together half inside and half outside the womb, with skilled physicians and nurses as his hands in the process.

We met a new family at church today and decided on a spontaneous backyard picnic.  The weather was perfect, and Jonathan spent most of the time on a blanket in the shade of an oak tree laughing and grabbing his toy lion rattle.  He has started to enjoy the out-of-doors. He smiles.  A lot.  We are grateful you spent as much time in as you did, buddy.  We are glad you can be outside now.



Saturday, June 29, 2013

When night fell

June 29 into June 30, 2012

A year ago at this time I stared at the white ceiling, then at the cabinets around my bed.  A horrid shade of light pink shelving.  My eyes then whirred around and caught light reflecting on the window. After watching the hues of the brick building next to mine shift and darken, I stared back up at the ceiling.

I was alone in the hospital.

My husband had gone home and put the kids to bed and the nurses wouldn't need to monitor contractions for several hours or until I felt them again myself. They'd stopped for now, so all was still. I could stop trying to be strong, stop trying to seem rational and put together about all this.  I didn't need to gather information anymore or even hold a conversation. In short, I could cry.

But I didn't. Not right away. My brain was still whirring.

How did I get here?  Was this the beginning of the end of this pregnancy, the end of this half pound being in my belly? Was this a death?  It would have been, it could have been.  If I had stayed at work and then gone home and had the picnic, ignored the barely perceptible contractions -- what then?  I knew what then. I'd read the tear-filled posts by other moms on the board for incompetent cervices. But that was not my path. Why wasn't it my path? And now? Now that I'm here, what now?

The doctor had talked about a circlage, but said that in cases of prolapsing membranes, a circlage was risky. He also said that it might not be an incompetent cervix. I wasn't very effaced, as is usual for incompetent cervices. And if it wasn't my cervix, it was labor. And tying my cervix shut wouldn't stop that long term.

But I wanted to fix this. I wanted the hospital to find a way to keep him in. Because if we didn't... if I didn't do anything, what then?

He would be born, but he would not live. Could it be a death if the baby wasn't viable? It would hurt us as if it were a death. My family would rally around us. They'd understand our grief.  But it wouldn't be a baby, would it?  Not officially. Probably no funeral. No. I'd have a funeral. No. I didn't want this being to die.

My eyes fixated on a point on the ceiling, a tile just above the bed, turning grey as the late summer dusk called in the night.

I didn't want him to die.

I started crying. And praying. Then sobbing.

"God, this child is yours. He's always been yours. I can't hold him anymore. Please, hold him.  He's yours. Protect him. Please take him. I can't. My body isn't carrying him well any more. Please take him, hold him."

Realizing how "please take him" could sound, but not wanting to be too presumptuous, in an even quieter, stiller voice, my soul, like the voice of a timid child, cried, "please, don't let him die. Don't take him back. You gave him to us. Please don't take him back. Not yet."

---------------
At some point all parents realize that their children aren't really "theirs."  I had to face that fact early with my son.  In the middle of the night, on a hospital bed, only days away from the day he'd be born.
-------------------

Sorrow turned to anger and then back again to sorrow.  In the still of the now fully descended night, I fought with God. I cried and I sobbed. I pleaded and I prayed. This wasn't right. I was grateful to be here, yes, to still have a chance for this baby, yes, but I was losing so much. I might even be losing him. I was on strict bedrest now. Probably for five months. What about work?  My summer fun with my kids? The beach. My pregnancy swimsuit that I'd only worn once so far.  My marriage. Gardening. This baby. Mostly this baby. I thought I'd gotten over that miscarriage hump.  I'd thought he was a sure thing now. Healthy and strong, heart beating well. I'd thought he was ours.

I wrestled.  I mourned. I wanted some answers or peace, something that said everything would be okay.

And then I got it.  Not an answer, but a response nonetheless. "I am here."

That was it. No assurances, no peek into the future. Just "I am here."

But that was enough.

"Thank you." I replied.  A few more tears came.

Salt on my cheeks, I closed my eyes and tried to sleep.

~~~~~~~~~~~~~~~

6/29/13 -  Today my baby Jonathan sat up for the first time that sort of counted.  I mean to say he stayed seated for more than ten seconds without me holding him.  Up until now the record has been three seconds. He giggled with the girls who read him a book on the floor.  He's still a little tender and more prone to crying than usual, hang overs from Wednesday's surgery, but for the most part that seems behind him and he's so happy.

He fed himself applesauce for lunch. THAT was a mess, but he was very pleased with his accomplishment. He'll be one next month.

The day things went wrong

My nearly year-old Jonathan sits in the bassinet near my computer, fascinating with his hands and toys, experimenting with his voice, and feeling so much better.  Wednesday's surgery went well. We were out of the hospital three hours after surgery.  No complications this time, either.  We are so glad.

June 29, 2012
A year ago today, June 29, 2012, is when the unexpected happened.

I had prior approval to work a half-day.  I figured jet lag would start to kick in and I'd not have a full day of work in me.  So I slept in, had a nice morning with my girls, and then headed off to work.  I could have walked, but I was lazy, so I drove the mile instead.  As I walked the shaded path from the parking lot to the office, I breathed deeply.  Yes, good to be back.

I had two, maybe three braxton hicks contractions on my walk in.  One of them felt a little crampy.  It happened as I walked under the ancient oak tree.  I paused for a split second.  Ah, the fun of having my particular body.  The braxton hicks contractions had started early with Mimi, too.  It's just the way my body does pregnancy.

"Oh good!" I said as I walked in the office, "you two have met!"  I gave my friends a hug.  Elizabeth and Christina were both Medievalists.  Elizabeth was a friend from my husband's graduate school days. Christina was a work colleague. Elizabeth was in town, up from the South, for a conference, and I had told them they had to meet during her one month stay in the North. And there they were, both in my office chatting away like old friends.

"Welcome back!" they said.

I booted up my computer, leaned back in my chair, and started to catch up while I waited for the virus scan to finish its work. Elizabeth and I began to make plans for a back yard picnic that weekend so that our families could hang out.  Her oldest was (and not entirely by coincidence) nine months older than our oldest.  Their youngest and our youngest were also close in age.

Two more contractions snuck in.

After catching up with Christina, she left and I grabbed a glass of water.

The next time my belly tightened. I stopped typing and turned around and looked at Elizabeth, who was borrowing the other desk.

I didn't say anything, I just gave her a funny look.  But she knows me.

"Don't scare me," Elizabeth said.

"Maybe I should just put in a call to my doctor," I said.

"How long have you been having them?"

"Since before I gave you a hug hello.  But they're just braxton hicks."

"Might as well call."
----
I called my doctor's office and left a message, I really wasn't worried, just trying to be safe.

Elizabeth left and I continued working through my work emails.

Twenty minutes later they called back.  "The doctor says that as long as you're not having more than six an hour, she's not concerned.  We got your message yesterday, too, and that's fine."

"I'm having eight to ten contractions an hour" I said, "and one or two of them were kind of crampy."

"Just a moment" the nurse responded.

"I just talked to your doctor," she said after a pause, "Perhaps you should go in, to have it checked out."

"Sounds good," I said.  It's a Friday, let's just be sure things are all good before the weekend. The cramps were stronger than braxton-hicks, sort of, but they were really quite weak. A little different, maybe, but barely that.

I called Steve to let him know what was happening. "I can go by myself," I said, "No sense in trying to figure out child care.  I'm just going in to get it checked out. I should be home around dinner time."  Then I paused. Four to six hours.That was about right. Hospitals were slow if you weren't in actual labor.

"I'm coming home to get my kindle, so I have something to read while I wait."

I got the kindle as a graduation gift the month before.  I marveled at how it fit perfectly into the funky cut sleeves on the master's robe.  "The sleeves used to be for carrying books in the medieval age" I had declared (I'm actually not sure if that's true, you'd think with a handful of Medievalists as my closest friends I'd know.  It sounded right, though), "Now they're too skinny for books, but they fit kindles and cell phones just fine!

Steve brought me out my kindle as I drove up the driveway.  He'd taken the first half of the day to work, with the intent to nap with the kids in the afternoon. The girls were already in bed.  He gave me the Kindle and a hug, and a look that said, "oh, here we go again," while actually saying, "see you at five."

"Oh, one more thing," I said, "Elizabeth and her family might be coming over for dinner.  She was going to talk to Matt about it.  I'm sure they'll understand if we have to be flexible with time. And if you don't think you can get the back yard ready, then maybe we can hang out with them tomorrow night instead."

When I got to the ER, I was shown where to wait for the escort service to maternity. I stood for a while in that section of the lobby, back against the wall, waiting for the escort service. After a few minutes I grabbed a seat on the floor next to a woman who was actually in labor and who was also waiting to be escorted up. The front desk folks told me I could sit in a wheelchair, but that was on the other side of the room, and I felt silly sitting when I didn't even look pregnant, so I waved off their offer. Someone then wheeled me over a chair, and then I felt obliged (albeit still silly) to sit in it.

A moment later the escort person walked through the doors. So did another pregnant lady. That lady was REALLY REALLY in labor. "I'm 35 weeks along" she said. She looked panicked and in pain. Unlike the woman next to me who paused every few minutes and concentrated through her pain, this person was a panting, screaming mess.

The escort looked at a loss. Three wheelchairs, one person. The last one in line should not be left in the waiting room.

"I'll take one" I said, "I'm not probably in labor anyway, just have to have it checked out." As we went up the elevators, me pushing the relatively calm woman, I remarked, "My baby won't be born for another four months or so."

I got hooked up to the monitors to hear the baby's heart rate and measure contractions. They didn't really record the contractions that well, they were still tiny blips on the screen. Someone came in and checked me.  "Cervix is closed," she said, "but I want to do an ultrasound just to be sure all is well."

A chance to see my baby might make this whole false alarm worth it.

The ultrasound tech asked for my history, I told her about how my body "always did this" thing with fake contractions in the second trimester, and then I took a peek at my beautiful boy.  Cute kid. Sucking his finger. Nice heart beat. Cervix still closed, I could see that much. "So, everything looks good, then, right?"

"The doctor needs to read these images, I just do the scan" she said, as she continued to click and measure distances on the screen.

I'd never heard a tech say that before. I knew it was true, but normally they said, "The doc will look at this, but things are looking good so far."

So when I got back to the room, I used my phone to do a web search for an image of a cervix. Turns out that on an ultrasound they should look like long straight lines, not v-shaped.

Hm.

I found an image of a cervix that looked like mine had looked and read the words "funneling."

This was new.

---

Instead of hosting Elizabeth's family that night, Elizabeth's family hosted my daughters. They had a small college apartment near campus and agreed to let our girls hang out with theirs so that Steve could come in. He got a ride from friends to the hospital, since we only had the car I drove in. We think Matt, Elizabeth's husband, drove him in, but we really can't remember much. Just that he showed up soon after I called, we found a way for the girls to be taken care of, and we were both a little shocked.

I was admitted to the high risk pregnancy floor and another ultrasound was done around dinner time. This time the image was clear. I was two centimeters dilated with prolapsing membranes. This wasn't a v-shape any more, it was a straight shoot. And prolapsing membranes means that the sac holding my baby was pushing through that straight shoot.  All that sat between my baby's foot and the world was a thin sac.

How did I get here?

The words "incompetent cervix" was thrown about, as were the words "preterm labor."

"It could be either" the doctor had said. Then he talked about different treatment options. But the option right now was to try to control things, see if the situation "presented itself."  See what the next 24 hours held.

"If we can control the contractions, we can talk about other ways to keep this pregnancy going." the doctor said.

"How big is my baby now?" I asked the nurse. "Somewhere between a half and 3/4 pound." she said.  Steve and I laughed nervously.  So small.

"Grow, baby, grow."  We were a day shy of 21 weeks.  Or three days shy if you went by ultrasound measurements.  We had over three weeks to go before the magic 24 week mark -- the day he'd be considered viable.

----

That night Steve went home and I read posts on a support group for women with incompetent cervices.  Most had lost their first pregnancy, around 18 to 20 weeks, sometimes after having painless contractions. They were now on their second or third pregnancy and planning to have shots and circlages (like the ropes on a purse string, holding the cervix together), and other interventions to keep the baby in.

But they'd lost a child first, before they'd known there was a problem.

I was still pregnant.  And before bedtime hit, I was stable. I would stay pregnant, for another day at least.

How was I here?

I stared up at the ceiling of my empty room.  

How am I here?

Thursday, June 27, 2013

Back to normal for a day - sorta

I work as a support person in academia.  This means that the school years are harried and the summers are a time for catch up and preparation for the next year. Endless days stretch before me with few professors and fewer students. I clean, reorganize, shred, balance ledgers, create web content and databases, manage spreadsheets, update myself on campus policies, make templates that'll be used the next year, create calendars, and organize guest lectures for the fall.  It is a time to close one door and open the next.  In the summer I also only work half time.

Hooded, early May 2012
This year, 2012,  I really needed the summer. The spring semester had been busier than usual and my office showed it.  On top of that, in the evenings I was completing my graduate school degree or squeezing in some time with my girls, sometimes doing both. On top of that was the little being growing in my belly. 

If you read between the lines, you see that my husband is the hero of that semester.  He was the one who encouraged me to finally finish my degree, and did everything he could to help me have the time to do it.  This semester was no exception.

He watched the girls for five days so that I could attend and present at my first academic conference.  He regularly put the girls to bed because I was so exhausted or needed to finish a paper, and he even more regularly made dinner -- merging my strange pregnancy cravings with his palate for fine dining.  Oh, and he did all that while working a full time job more demanding than my own.

It had been a rough semester.  And we both needed a break.  The Europe trip left us both refreshed for the year to come, we thought.  We finally had a chance to reconnect.  I was looking forward to a summer of fun with my children.  And, since I love my job, I was also looking forward to getting back to work.



June 28, 2012  I probably should have taken a day off between returning home and starting work again.  But jet lag doesn't really hit until the second day, and the Thursday I returned was also the Thursday of our division's annual support person workshop. This is the time when I get together with people who have similar jobs across campus, and we support people support each other.

It is an event that I find helpful every year, but this year the agenda seemed made for me.  It was a sweet combination of things I should have known how to do better but didn't, things I had dealt with extensively the previous semester, and something that was my passion - learning how to work better and be more hospitable to international students and linguistic minorities.

I really went for the last reason.  I could have gotten notes on the other things.  But working with international students and English language learners?  This is what, just a month before, I'd been hooded to do.  And I wanted to support Professor Anne, the closest thing I had to a professional colleague in TESOL at my school, as she gave her presentation to my peers.

Turns out Anne was also pregnant.  She was due in December, I was due in November.  She was still experiencing morning sickness.  Her low appetite and my ravenous appetite were part of what turned our lunch conversation -- which I'd assumed would be about international students and teaching -- to pregnancy and babies.  In hind sight, the three other women at our table probably preferred talking about babies to talk of how to teach non-count nouns and idioms.  Half the table were seasoned mothers and grandmothers, so advice was showered on us both.

What we didn't discuss was what happened right after the lunch, when I took one last break before going back into the meeting.

I'd never seen a mucus plug before.  I guess I'd never noticed it when I was pregnant with my daughters. I was sure I couldn't be seeing one now.

It fit the description though.  Perfectly.

I was only 20 weeks and 5 days pregnant. Due November 10 according to my last cycle.  Or, by measurements on every ultrasound I'd gotten over the past three months, I was due November 12.  So 20 weeks and 3 days pregnant.  In the long run, two days doesn't matter, but I was going by the November 12 date. It was a mental game to make me feel better (and less likely to induce) in the third trimester.

20 weeks and 3 days pregnant.  A strange time to see what I was seeing.

But these things grow back, right?

I called my OBGYN before going in to the afternoon session. I got the office answering machine. "I think I just lost my mucus plug with a tiny bit of blood.  I'm 20 weeks pregnant. I'm not having contractions.  This is fine, right?  Another one will grow?  Anyway, if this is a problem, or you need me to be checked out or anything, could you give me a call back?"

I didn't get a call back.  That's good, because I was sure it was nothing.

I went home and heard more about Grandma Day Camp.  I saw the rocks E & K had painted to look like monsters, complete with googly eyes.  I heard about how Grandpa had thrown them off his shoulders at the YMCA pool, and how they both really really wanted to go back.  I heard about the dinosaur museum. My husband, Steve, took us to a park where several students, professors, and their families had convened to talk about their research projects for the summer. Steve was helping to lead the summer research program. We ate burritos and enjoyed the sun. Then I slept hard.

It was good to be home.

Home again - A father's cancer


A year ago, June 27, 2012 we returned from our European vacation and a new adventure began.  I use "adventure" here as a Mary Poppins euphemism.  Adventures are fun, this wasn't going to be much fun.  But if you sugar coat something, it goes down better, right?

The "adventure" began on the way out of the airport.  Steve and I gave our girls big hugs and the first of our many trinkets for them.  We saved mom and dad's gifts for a nearby restaurant as dad hadn't come to pick us up.  "He has your car and he says he'll meet us at the restaurant" she said, "but he might be a little late -- he's got an appointment."  As we drove away, mom had her best "everything is grand" look on her face.  The one that means everything isn't grand, but she doesn't want to trouble you with the details.  I figured my kids were more of a handful than she'd expected! She is trying to hide her exhaustion.

She got a phone call from dad.  He was done with his appointment and would be at the restaurant on time.  After a few more "uh hus" on her end, my mom hung up the phone.

"How was the appointment?" I asked.

"Oh alright.  He''ll be on time, so it didn't take as long as he'd expected..." she started to fumble, then she became direct.  "He was at the doctor.  He has cancer."

...

My pictures of Bulgaria and Scotland were no longer important.  Instead of spending our lunch going over the trip, we alternated between a strange mix of trip memories, "grandparent camp" memories, veiled cancer thoughts, and taking turns bringing the girls to ride an overstuffed fake buffalo so that the remaining adults could have deeper conversations about our cancer thoughts.

We discussed how maybe the cancer wasn't that bad.  Maybe it hadn't spread.  Maybe, even if it had spread, it wouldn't be that bad.  Steve's dad had had the same cancer.  He'd lived with it for over a decade even though it had spread before they'd caught it.  He was still fighting strong.

After lunch, we gave several big hugs, transferred the suitcases and car seats from my parents' station wagon to our Saturn, and drove the many hours home.  We got in just as the sun was setting.  Maybe it was just the jet lag, but the day felt a bit surreal.




Wednesday, June 26, 2013

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.

------------------------------------------------------------------

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

Tuesday, June 25, 2013

By way of introduction

There are times in your life when you realize this might just be the last chance you have to do something -- so you go for it.  Even if it doesn't make exact sense, you rationalize that this is the last chance you'll get, so you might as well try to follow the dream.

Bulgaria - 20 weeks pregnant, 6 days before bed rest.
 That was me a year ago, June 25, 2012.  I was in Europe, enjoying the mountains of Bulgaria with my brother and his family. This trip was my crazy dream. My husband had just finished up a conference in Scotland and had joined us.

I wasn't going to join him in this business trip overseas, not initially.  When his paper was accepted to the Scotland conference, I assumed I'd be jealously staring at the pictures on a computer screen with my daughters in the heartland of America.  This was not for Steve's lack of trying.  He was accepted six months before the conference, and within a week he had approached my parents to see if they'd like to have Grandparent Camp at their house for a week so we could tag a spousal vacation to the end of the conference.  I had pointed practically at the bottom line of our bank account -- which wasn't very large -- and said that maybe we should save our money until we had a little more.  Maybe next time.

In late February my period was late.  In early March, I received a positive pregnancy test.  I looked at my adorable two daughters, Ella my five year old and Mimi my three year old, and I realized that one more added to this mix would be one too many for Grandparent Camp.  Plus, it would be years before this third child was old enough for a week-long sleepover, and with a child on the way it would be even more years before we could afford to bring all the kids with us on an overseas adventure.  It was take a vacation together now, or wait until the kids all graduate.  And once we'd jumped the pond, it only made sense to take a relatively short flight to see my brother's family on the other side of Europe.  So I went.

Steve's Scotland conference fell on the 19th week of my pregnancy.  The timing couldn't have been better.  Morning sickness passed about a month earlier, and I was feeling good.  My OBGYN gave me her blessing and admitted she was a little jealous.  The second trimester was a great time to go, and this pregnancy looked good.  I debated waiting until after the trip to get my 20 week ultrasound done, but there was a slot opened the day before our departure, so I snuck it in.  Thus, I was in Bulgaria with a roll full of pictures of my  baby-to-be, sharing them not only with my brother and his family, but with his in-laws in his wife's former village. It's a boy, I proclaimed. A perfect, healthy baby boy. And then I had an extra helping of shopska salad. I wasn't a pig, the ultrasound justified it.


I walked the mountains positively glowing. Well, besides the nasty cough from a bout of bronchitis, I was absolutely glowing. Besides the glowing and the involuntary holding of my belly, strangers probably couldn't tell I was pregnant. I just looked like an overweight American.  My neices and my sister-in-law wanted to feel the little guy, but he never kicked hard enough for them to feel. Toward the end of the trip I started to feel him more and more. He was quite the jumping bean when he got moving. I was even sure I felt his full back on the palm of my hand at one point.

"The last part of this pregnancy is going to be hard on my body, with a kid this active!" I thought.  But that was four and a half months away.  For now, I had energy, I had my appetite, and I had a buffet of Mediterranean food surrounding me daily -- a fresh fruit market around the corner and a pastry shop two blocks away.  Life was fantastic.
-------------------------------------------------------
A year later and I have an 11 month old baby boy. Actually, 11 and a half months.  It's hard to believe he's that old.  He's still wearing three to six month clothing, and his feet just surpassed his sisters' newborn footprints. 

Today, June 22, we're camping.  This isn't Camp Grandma, it's a real out-doors camping trip -- except for the overnight part.  We've got to keep him away from too much smoke because of his lungs, so we went up for the day, hung out with friends, and are just about to head home.

(This isn't actually the camping trip)
We sit in a circle singing songs while the sun begins to sink over the water.  My husband is a part of the full circle of 20 or so people, my daughters are sitting in a  little-kid inner circle alternating between taking "selfie" pictures with my camera, and artistically capturing the grass.  Thank goodness for digital cameras, no film is being wasted.

I'm on a blanket with Jonathan behind the main circle, trying to hide the fact that I'm feeding him through his feeding tube.  He's getting to the point where he barely needs the tube, but the humidity of the day has impacted his lungs just enough to make him borderline tachypnic.

Tachypnic -- one of about three dozen new words I've learned over the past year.  I already had a masters in teaching English to speakers of other languages (TESOL), and over the past year I've mastered speaking Medical to doctors of many disciplines (SMDMD). Tachypnic here means 'breathing too fast to take a bottle but otherwise not really in any serious respiratory distress.'  It's a place Jonathan likes to hang out, hence the feeding tube.  But we'll get to that more in about eight months time.

================================
Welcome to my blog.  This is a look back at the past year, with occasional glances at the present time.  It is my attempt to make some sense of the past year, because making sense of it all is a sort of therapy for me.

As you see, a year ago I was half way into a picture perfect pregnancy, complete with morning sickness, baby flutters, braxton hicks contractions and just one or two first trimester scares.  It was my third pregnancy, so I knew the drill. But then suddenly I didn't.  I had a normal pregnancy up until this day a year ago.  Within a week I would be considered a high-risk pregnancy.  We don't really know why.  I started searching the internet, suddenly very interested in birth stories from early preemies.  I ran into a lot of sad stories, and desperately did not want my son to become another one of those stories.

But he came early.  [Spoiler alert.] My son was born 17 weeks early, at a gestational age of 23 weeks -- a grey period in the life of a preterm infant, where viability of the infant is at the very earliest end of "marginal viability" and where it is assumed that any infant that lives will live with disabilities that carry with them through life.  A study from 1996 states that the chances of survival for these 23 weekers is about 5%.  My NICU said their rates of survival were just under 50%.  Either way, this isn't a great way to enter the world.

My history professor in college said he knew when the Cold War was over because he found he could start writing about it.  Jonathan (or JAM) has finished his NICU journey, and has started on a new chapter of his life. I know the worst is over, because I can start writing about it. He won't remember this time, and a significant part of me is jealous of this.  That said, despite the hard times, I do not want to forget the lessons I've learned.  And so, I blog.

This is about my son, but also about how his life, even before he could open his eyes, had impacted ours.  This is Jonathan's journey.  Or, since that blog name has already been taken, welcome to JAM Sessions: Lessons Learned through a 23 Week Micro-Preemie.