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.

Day 20 - A matter of heart.

A year ago we'd discovered that Jonathan's PDA, which had initially responded well to the drug therapy but not entirely closed, had now reopened.

The doctors were split about what to do. About half the team suggested letting him grow bigger and then assessing the need to repair. Bigger babies have an easier time with surgeries. The other half worried that not repairing it would compromise his blood flow and make it harder to sustain his life.

We were glad for a team approach to medicine. So glad.

Looking back I see that, for one, it meant our doctor would not try to determine Jonathan's worth and pressure us to make decisions we weren't comfortable with. Not that I had that on my mind at the time, nor did he ever pressure us in this way, but I watched this documentary called "Little Man" a long time after J's birth, and the doctor in THAT film was so horrid about what the parents should do (or not do) for their son. I was so glad that my neonatoligsts weren't like that doctor.

A year ago today I didn't really know what Jonathan's primary doctor was like. I had pictures of him resuscitating my son, pictures that Steve had hastily snapped while trying to remain unobtrusive while I was being sewn up after surgery, but I had little data about him. Oh, I knew a little. When the social worker took me to pick out a quilt for Jonathan, donated by sweet sewing souls in our area, she mentioned that he had a sense of humor. And liked trains and cars. I was sure to pick a quilt with trains and cars. But that's about it.

He hadn't really been present since Jonathan's birth. It was mostly due to poor timing. He'd gone on vacation three or four days after J's birth, and hadn't returned. We hadn't really seen him before he left, either, though, other than at delivery and a glimpse a day later of him charting outside our room. He never came in. Not while we were there. I wondered at his distance. Did he purposefully remain away those first few days before vacation because he knew the likelihood of J's sustained life after his time away was slim?  He had seen a lot of babies not make it. Did he not want us to ask if our son would live? We knew better. But he didn't know that.

The team approach meant J didn't have one doctor, he had six or seven. And many of them were present (and not on vacation. They made a point to come in and warmly greet us and comment on his size or personality or preferences. They seemed to care.

With a split team, though, we weren't going to do anything about Jonathan's heart. When the situation presented itself better, they would then make a decision about closed heart surgery to fix the PDA. Maybe new information days or weeks later would tip the scale. For the time, though, all we knew was that his heart wasn't working as well as it could. Maybe that's part of why his lungs weren't working as well, too.

But he was still alive.

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Not sure I'm happy with this, mom

TODAY - 2013

J finally got to meet his other male cousin, JB, today.  JB is a four year old who has been praying for him since birth.  Who can blame little JB for praying?  I mean, he has EIGHT other cousins, all girls. In some sense, it probably felt like J was his only chance of playing guy games.  That's at least a year off yet, but it'll come.

J himself was crabby yesterday and today. Unusually so.  He smiled once for his uncle, but then threw up on him a minute later. So I'm not sure what that smile REALLY meant.

This afternoon he cut his first tooth. Teeth, actually.  Two ragged edges poking up from his lower jaw.

No wonder the poor guy was crabby.

Okay, happy now!

After that, he was all smiles and showed off for his grandparents. He rolled all over the floor, grabbed his feet, passed teething biscuits from one hand to the other and then stuffed them in his face (gotta use those teeth after all), and all in all charmed everyone he met.
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Tonight before blogging, I read this article.

I've written about our choice to resuscitate and the difficult decision that can be, so you can probably guess my response.  I thought, "Wow, she makes the temporary seem so grim."

She sees only the smallest part of a portrait. She needs to re-frame the image and see a larger picture. Does she not remember that this is life we are talking about? Potential for life -- good, full life?

Yes, parents must know that there may be disabilities. Yes, we SHOULD be well-informed. But this article is so horrific. It forgets about the hope each day of life brings. It almost makes it sound like parents aren't ready and would make a different decision if they really understood.

We weren't ready. No. Who could be?  But we were well informed. Now, a year later, we would not have changed our minds with any more information. You'll see, if you keep reading or if you know us, it wasn't a walk in a park of a year, either.

J won't remember his pricks or the pain he went through. How much do you remember of your first three to five months of life?  J's dad was a preemie, too (for unrelated reasons) and has some similar scars. He doesn't remember getting any of them. He carried his prematurity through his early childhood (and in some ways into adulthood), but he still enjoyed being a kid. He's a doctor now. Dependent on a med or two as a  yes, but he's had a really good life.

The PT told mommy I had to experience different textures.
I'm like a scientist, figuring out the world.

She forgets that in this article, that the pain is temporary. The disabilities, if they come, may continue for years or a life time, but the pain doesn't usually last. She forgets or doesn't know  that the disabled among us are not without great worth.

If all goes well some day that micro preemie will be a four year old, sitting in the sun on a beach, enjoying the breeze. He might even be doing so with eyes that see and feet that run and arms that swim. But even if not, he'll be alive, and the same breeze that floats across my brow will hit his. And he may giggle. And the fight - it is hard, yes. She describes me and my son perfectly. Brain bleeds (only one, and small), bowel perforation, yep, post traumatic stress, yes. All of that. But the fight - the fight is worth it.

We think this, and we're only 7.5 months out of the NICU. Scars fade. Hope remains.

Thanks, docs, for giving the choice to us.

Chil'axing, with arms flying like only preemies can!
I love having my arms out to the side.
Mr. Jason, the physical therapist, says it's a preemie thing.