18 months old - Cognitive Dissonance

My son is a year and a half old today.

I look at pictures of him just after birth, and then pictures of him after coming home, and I cannot reconcile the two. The son on the right and the son on the left in the picture below are the same son -- but in my mind they are from two different worlds, with two different sets of hopes and dreams.

You weren't that pretty when you were born, but you've come a long way, dear boy.

Welcome to your toddler years!

A snapshot: Life a year after having a "23 weeker"

A week ago (on October 14) my little JAM and I packed up and headed off for our usual morning physical therapy session.  What I knew, but he didn't, is that this Monday would be a bigger day than usual.

After he was encouraged to walk and stand, and pushed into all sorts of trunk-turning positions on an exercise ball -- that is to say, after we'd worn him out entirely -- he grabbed a cat nap, I grabbed a coffee, and we drove down the road to another office.  The Developmental Pediatrician.

This was our BIG appointment. We were told to expect it to take two to three hours. For us it took four hours.  It would be a snapshot for our doctor of where EXACTLY our son was now. This would help her catch anything that might otherwise be overlooked. This is also where a couple of studies that are following Jonathan get a chance to check in with us.

A psychologist came in and measured JAM's receptive, expressive, problem solving, fine motor, and gross motor skills.  JAM did a terrific job. He's on track or above (for his adjusted age) for nearly everything. He's got a long way to go to catch up to his actual age, but I'm still mighty proud of him.  His performance was true to what we are seeing at home.

He's significantly behind in gross motor skills (measuring as a seven month old would -- he should be more like an eleven month old or higher). We expected that with his multiple abdominal surgeries, though. And his tummy is often in pain, so he's not very willing to turn his trunk and learn to move from sitting to playing on the ground.  This is a known issue, and this is why we have him in PT.

He's a month behind in receptive skills (measuring as a ten month old), but part of that is because he doesn't yet respond to "no." THAT, in turn, is because (since he doesn't move around yet), I've never had to TELL him "no."

So, in short, we're pleased.

Want to see what a baby born at the cusp of viability looks like as a 15 month old / 11 month old (adjusted age)?

JAMin' with the sisters.

DARN CUTE, that's what.

Take note, nay-sayers.  These kids are so worth the fight.

The last two hours of the appointment, JAM finally got to take a catnap on the sheet they'd laid out for him, and I spent time talking to dietitians and nurses about his weight and height. That deserves another blog. In short, though, we have started a series of tests to discover why he is not growing well.

Frankly, I think it all comes down to JAM's dad, Steve.  For one, he nibbles at Jonathan's neck and feet all the time, tickling him with his stubbly beard and making Jonathan roll in fits of laughter. How can we expect him to grow when we're continuously nibbling at him?

And then, also, there's Steve's direct command.

 "Don't grow," Steve says to all our children, "You're not allowed to grow up! You have to stay cute and little forever."

Ella is particularly disobedient in this regard. As a six year old she is quickly outgrowing clothes made for an eight year old. She'll glare and roll her eyes when Steve gives this command and say, "But daddy! I HAVE to grow."  Her height, like her attitude, is quickly growing to that of a young teen. In her determined defiance we would not be surprised if her final size tops six feet.

Mimi laughs and giggles and promptly forgets Steve's command not to grow, as she frits around the room stuffing home-made crowns on all her dolls and on her father's head. She can get away with much, including growing a little bit. Her cute demeanor makes us forget her disobedience.

Yep, dad, I'll stay small. Whatever you say!

Frankly, Jonathan has been the only obedient child of the three. He really loves the world and wants so much to just soak it all up. If daddy says don't grow, he won't grow. (I should have used this as an example to the psychologist of how he really DOES understand the word "no.")

Okay, like all kids he pushes the limit.  He rebelled a little last weekend, stretching his size three month onsies and giving us an excuse to pull out his six month outfits. He heard that babies a year younger than him might soon be giving us hand-me-downs, and decided to stay just ahead of that curve. I don't blame him. At this point, it's a matter of pride. Stay cute and little, but not SO little that the other kids can beat you up. I get it.

Anyway, all this nonsense and utter obedience worried the developmental pediatrician, and no less than four preliminary tests were ordered. The biggest scariest one happens tomorrow.

I am grateful that the pediatrician takes all this so seriously, perhaps it's not just obstinate obedience. In either case, I have asked Steve to stop giving his command on "no growth." We knew Jonathan was good natured and easy going, and now it seems that all this obedience is causing no end of trouble.

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.

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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.

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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.