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.

A year ago - 1 month old.Today -13 months old. Taking down a day-dream soccer ball and letting my imagination play.

A year ago we celebrated Jonathan's first month of life with coconut sorbet and raspberries all around.  The girls sang him "Happy Birthday" into a video recorder, since they couldn't see him that day.

He was in the hospital, not doing that great. His kidney function was continuing to decline. He was no longer getting my milk because of this and was back on IV nutrition entirely (they call it "TPN").  He was spending his lunaversary getting tests and scans done in order to get a clearer picture of what was going on. (Lunaversary = my made-up-term for a month-anniversary, although apparently I'm not the only one to come up with this).

We were very very uncertain about whether or not he'd make it. In some ways, it felt like we were on borrowed time. Ella had been in school for a week, and I'd made arrangements for Mimi to start day care the next week. I was still on maternity leave for two more weeks, but I wanted to be able to spend as much time as possible of those two weeks with my son, at his bedside, hopefully holding him every day.  I had hoped, too, that maybe he'd graduate from the tube breathing to nasal cannula, so I could maybe try to nurse him.  Either way, I wanted to be near him. I wanted him to know me.

He was growing up. He was entering his third trimester.

=================

Today Jonathan is 13 months old. We didn't do anything special for the day, but Jonathan DID finally get the knack of feeding himself teething biscuits and allowing us to feed him baby food this week. This has been a long, hard struggle, so we do not take this for granted in the least.

By the looks of it, he'll have his G-tube (feeding tube) out by Christmas or before.

We couldn't be more thrilled.

Steve was reconstituting an amazing burrito meal from last night in the kitchen while Jonathan chomped on his teething biscuit, putting his two new teeth to work as best he could. I started chatting with Jonathan about food and life. Steve turned around and looked.

"If I could have had this picture last year," he said, "it would have made things so much easier."

If we could have known.

This is what we dreamed of, but most days, frankly, I didn't dare to dream, because the dream brought with it the sorrow.

I remember about a year ago the girls were playing in the front yard.  For a moment, a brief moment or half a moment, a three year old Jonathan was in the front yard with them. Under big maple tree, trying to kick a worn soccer ball. He missed, Mimi kicked, all the kids ran. Jonathan's legs were small, but he laughed and wasn't deterred. He hit the ball the next time, and it started to roll just a litt--

And then I broke off the dream. The cart was getting way ahead of the horse, here, and it was hurting my heart. "Stop, stop!" my heart screamed to my head. He might not live. Even if he lived, he might not walk or run or see. No. There would be no dreaming. Dreaming would mean lost dreams, broken dreams, failed expectations and hurt. There would be none of that. I needed to be a strong momma, a proud momma. If he lived, I needed to be able to glory in his accomplishments, whatever they were. I needed to not be sad from broken dreams. I would return now to just hoping and praying that he'd survive. The soccer ball was mentally shelved. Maybe someday. Not now. Now we'd take whatever came with that as it came. But there would be no dreaming. That would hurt too much.

...

I took the soccer ball down from that mental shelf when summer finally hit about two months ago. I played my daydream out in my head again. This time it didn't hurt. He'd have to be at least three in my day dream, that much was pretty clear. He wasn't even sitting yet at one year old. But I think he'll get there. He'll run, I think. He'll play, too.  And at the very least, he'll be there laughing with his sisters.

Week 3 & 55 of life: Two bridges - the difference a year can make

A year can make a huge difference.

A year ago, still healing, I struggled to walk up this bridge to the NICU

This weekend I ran this bridge.
(Click and check the top of the tree line on the horizon if you can't see it.)

This is what I earned this year - a metal around my neck.

This is what I earned last year - a child next to my heart.

First time holding my son, at three weeks and two days old.

This is how we did kangaroo care.

A blanket and my heat kept him warm.

Two nurses helped get him on my shoulder so that

he would be safe and not too much disturbed.

We worried that he'd get too cold.

Gratefully, I've held him many times since.

Here are me and he, exactly a year later.

We don't even call this kangaroo care any more.

I'm just holding my baby.

The sun keeps him warm, sometimes too warm,

And I can pick him up whenever I want to.

A year ago when I was done,

we (at least one nurse and me)

would snuggle him back into his isolette.

He had a very hairy blonde back.

He had brown silky hair.

Now when I'm done,

I pass him to an uncle.

He stands and chats at us. Or yells about the weather.

He has a very hairy blonde head.

His uncle has the brown spiky hair.

We sit and stare at my favorite river.I think about the race we ran.
"See little buddy?" I whisper to JAM,
"I told you it would get better."



Scars - they fade.

Remaining only as pillars, reminders
of our struggles
and of God's faithfulness.

Pain - it disappears.

Except for on those days
when the weather changes
and the ache reminds you of what you've lost
A lot. A lot was removed.

But
A year ago, a year
was all the further ahead I dared to dream.

The most important bridge was a half a block long.
Now the bridge is longer.
We see farther.

A year - can make a difference.

Independence

Happy Independence Day.

My bed turned to see the window

A year ago today Steve's mom was in town.  So, as noted before, were my friends Elizabeth and family.  We'd never managed to have the back yard barbeque we'd planned for a week earlier, but my hospital bed overlooked the river and the nurses said we'd get a decent view of the fireworks.

So we all crowded in to the hospital room (I'm sure breaking hospital policy on maximum occupancy) and celebrate the fourth. The girls brought sleeping bags to put on the floor so that the nurses wouldn't be so worried about germs. We'd learned quickly about the hospital's no sitting (or apparently licking off or crawling on) the floor policy.

By the way, did I mention Steve's mom was here? She stayed with us for the long haul, and made it possible for the girls to feel loved and Steve not to feel pulled. She kept us sane. She's a florist, so my hospital room was also always full of floral cheer. I was grateful. When doctors and nurses entered, I looked well-loved.

Staying off the hospital floor... sort of.

We enjoyed junk food and kids movies on TV. The girls didn't make it to the BIG fireworks show. Night comes too late here, and they were too tired, so they went home after the smaller pre-shows were complete. I was alone watching the big fireworks show from my room.  I suppose Jonathan was there, too, but I don't think he could even process sound yet, and so he missed the show.  Even I didn't make it through, though. Being on bedrest is exhausting, and watching a huge fireworks display outside your window when you are alone in a hospital bed just reminds you that you're alone in a hospital bed.  It's not as fun.

Girls with friend watching fireworks out hospital window