Sunday, December 8, 2013

JAM today -- 16 (almost 17) months old

I realized that I've been playing old hits lately, and haven't given any updates on the current state of JAM.

Mostly this is because I'm so delighted to be finally at a point where everything, EVERYTHING happening in the NICU a year ago was fun and exciting, so it's not so hard to look back. PTSD and flashbacks, BEGONE!

But last week a brave response from a reader in my post on questions of viability for 23 weekers reminded me that I haven't really talked about him NOW that much. And maybe that'd be a good thing to do.

I know friends and family want updates. I know some of them want to ask about his abilities, but feel afraid to do so. Friends, it's all a matter of wording. Ask "What's he doing these days?" and I'll brag. Ask "Will he be normal?" or "Is he special needs?" and I won't know how to answer. I know you want bragging points, but it's not that simple, so what you'll get instead is me mumbling something out,  probably over-explaining and definitely feeling a bit uncomfortable. Can you blame me? He's alive and he's thriving, and THAT to me is enough. What would you say?  He's just JAM. My semi-perma-baby-but-finally-growing little-buddy JAM. He's one of the easiest going, funniest little babies I've ever known. (And if you are from our grad school days and knew Ella as a baby, you know that's saying a lot!)

His favorites are his sisters, with mom and dad taking second-best. He thinks tickles are amazing. He gets them every night for bedtime, and he'll remind us if we forget. When we change his last diaper of the night, he'll say "icgle" and "awrawrawr" (the sound we make when we tickle) and pre-emptively raise his shoulders up and start smiling -- he knows what's coming next. If you'd met him in person, you'd be in love.

So now on to cute pictures and some stats - my blog version of over-explaining. In/while short, he's pretty amazing. (And, yes, Grandmas everywhere, I do wish I'd removed Mimi's shoes, that scrap of paper, and their friend's birthday present from the background before filming. But alas, at least the floor was MOSTLY clean...)

A snapshot of JAM at 16.5 months

26 inches, 16 pounds 4 oz.
He fits well into 6 and 9 month sleepers. So, still small, even for his adjusted age (12 months). While we aren't sure why, it seems like these sorts of statistics are pretty typical for babies born at 23 weeks gestation, so we aren't too concerned.

He takes all nutrition by mouth, but he's picky. The only table food he'll get excited about are soft roasted beets. Otherwise we fill his tummy with purees and teething biscuits as well as a toddler formula (that is like an energy shake for babies).  He has a g-tube (feeding tube) but we've started the three month countdown for removal, and it will probably be out by February or March.  He's starting back into feeding therapy to learn to accept (and not force-vomit) other textures.  Feeding therapy helped him get to where he is. He didn't take a bottle consistently until he was about 10 months old --mostly because he remained tachypnic. He didn't take purees well until 11 or 12 months old.  He'll chew on toys now, but that is because he knows they won't go to the back of his throat.

He can say a handful of words. "Amah" is "mom," and "muh" is "milk." Yes, it's hard to tell the difference between the two. I usually hold up a bottle, and if he starts waving his arms wildly, I know he meant "milk."

"Ubp" is "up," "Eahhhya" is (Ella swears) "Ella," (although as that's his favorite string of vowels, it seems he says her name a LOT), "pah-pah" is "please change my diaper, I think I made a stink," "a-go" is "go"and "owe" is... well, both the best pronounced word in his vocabulary, and also very sad to hear. He doesn't cry much, but he will moan "owe," interspersed with little whimpers and snuggle his head into my shoulder when he's having a particularly rough day.  Ear infections are a common cause.

In occupational therapy he just graduated from some vestibular training combined with training to help him learn to turn his trunk and reach across himself for toys. Prior to that he wouldn't catch himself when he started to fall while sitting, because he was very unaware of where he was in the world. His startle reflexes were off a bit in the NICU a year ago, too, so we weren't super surprised, but it was hindering his ability to learn to manipulate the world. He's all better now. See the video of him sitting up?  Isn't he amazing?

He can stand and walk if he's holding on to something, like our fingers. He's still working on crawling. He wears ankle-foot orthotics to help stabilize him and develop his walking muscles as he's still quite a bit (4 months) behind on gross motor. Mostly we believe this to be a result of many many gut surgeries, the last of which was when he was an adjusted age of four months old. Hm... the math sorta makes sense.

To help him catch up (in theory he has eight months to go before he should be like a normal two year old), he's going to OT and PT appointments once a week and he has an early intervention teacher come to our house for an hour each week.

Doctors/Specialists (seen about twice a year each)
JAM gets to hang out with:

  • A nephrologist to follow up on his kidney failure from a year ago and (unrelated) kidney stones and (possibly related) hydronephrosis.
  • A pulminary nurse for his chronic lung disease, which so far only presents as fast-breath when he gets a cold. It is well managed with a twice daily puff of inhaled steroid and PRN albuterol (just when he gets sick).
  • A developmental pediatrician and a dietitian in the same office. They're keeping an eye on his "failure to thrive" status.
  • An optometrist because he's nearsighted. They also follow-up on any issues from the scarring from the surgery for retinopathy of prematurity

In short, he's a joy to us. But not only that, he seems to REALLY be enjoying himself.

Yes, he has appointments galore to try to catch up, but this just means that we're not entirely home-bound during RSV season. That's my silver-lining, at least.

Some things he's accomplished since birth: able to open his eyes, breathe on his own, take from a bottle (this all in the first three months), able to roll over, take food from a spoon, recognize his name (all by 9 months), no more preemie arms, lessening of oral aversion, able to rock on all fours and walk with assistance, able to respond to gravity and to language. Able to imitate word sounds / has a few words in his own vocabulary (all by 16 months).

When compared to my daughters, both of whom were, without much help from me, walking by 10 months and had a vocabulary of over 20 words by a year old -- yes, he seems behind. But compared to himself? I'm awfully impressed. He wants to learn, and we're working daily to get him to the next step. It's a terribly fun journey. I'd skip the first four months of it, and maybe the March and June surgeries, but otherwise it's been great.


  1. He is absolutely adorable! Love his smile and his happy laughs! Jax took forever to crawl. He started getting up on his hands and knees, and then took 3 months to actually do anything with that! Patience is not my strong point. :) I'm glad feeding is going better and that he is chewing on toys - that's definitely a step in the right direction. I'm amazed by his list of words! Way to go JAM!

    1. So, I was right on the sweet time thing, then? Good to know! (and glad to know I'm not alone. JAM should be crawling soon, if JAX is any indication.)

      Maybe I should move my guess for JAX's walking date out a little more? ... Naw. I still hold to early January. Like you said, he really wants it. And he's got the strength almost there. Just gotta get the confidence to step!

      Is your house all kid-proofed? That's my big project this week!


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