Tuesday, December 15, 2009


Well, at least she's cute, right?

I had a long meeting with the developmental pediatrician this afternoon. She sort of went over all the things Jane's got going for her, developmentally speaking, and what areas need work.

Let's start with the good, shall we? Dr. L was very pleased with Jane's attentiveness and curiosity, her ability to track objects and especially people as they move, that she responds to noise AND visual stimuli, that she's trying to bat at things, the breastfeeding (more actual feeding today!). Oh, and that she's trying to get her hands in her mouth. There was something she was particularly impressed by, but bad mama that I am I can't remember it. I think maybe her awareness of the people around her, but I couldn't swear to it.

And then there's the gross motor stuff. Not such a glowing report, but not terrible. The photo above actually illustrates a number of Dr. L's concerns. See how she's arching her back? She needs to quit doing that. And how she's looking up? She needs to start looking down more. And that arm that's flung backwards? That needs to come in toward the center of her body. She's doing a lot of random movements with her limbs; Dr. L wants to see those become more rhythmic and "meaningful". She needs to do more cycling with her legs. And that solemn look on her face? She needs to give a social smile. Oh, and she's not good at shutting down when she's overstimulated, so we have to help her with that until she learns to self-soothe.

Oooookay, then.

And this came AFTER two ultrasounds, a trach change and a trach tie change (I helped! go me!). I mean, that's a LOT of stuff to throw at her. (Even if she was on ativan for most of it.)

By the time Dr. L was done, Jane and I were both bushed and overwhelmed. She got swaddled, I got in the car and finally ate lunch. An hour before dinner.

Dr. L wasn't militant about it or anything, and fully understanding of all the stuff Jane's been through that would have curtailed her gross motor development (her BPD [kids often had a barrel chest from throwing their arms back to try to open up their lungs], the trach forcing her head up and back, everyone's fear of extubation limiting her movement, recovering from the surgery, plus low birth weight after hanging out in a uterus without a lot of fluid to stretch out in). And Jane's not in bad shape, she just has (a bunch) of stuff to work on. Well, *we* do. My visits from now on get to be all about the PT. Social/playing PT, but still. Row row row your boat, dammit!

But the attending (The Other Dr. L, the developmental Dr. L's husband) was great this morning about laying down the law. No more changes until we come up with a plan! None! The neonatal dietician wanted to change Jane's feeding schedule to try to help with the vomiting (oh, they ruled out pyloric stenosis today -- yes! another one to cross off the list!), and he WOULD NOT LET THEM. The man said no changes, and by god he meant it. Nice.

Big family meeting tomorrow. Should be interesting, and by interesting I mean "informative and useful" and not "an unnecessary recap of past event without forward progress or decision-making".


artandsoul said...

Good luck with the family meeting. I know you're probably ready for things to be less "interesting" but I guess this is the road you'll be plodding.

I'm hoping you get to feel a sense of planned changes, and all-on-the-same-pageness sooner rather than later. Tom sounds like he's got a good handle on this! I like the idea of manifestos. Go parents!

Jane is adorable...and personally I think most of the mom/baby time in the first few months could probably be classified as P/T if we knew then what we know now! I held my first child so much I impeded her development and she was really late sitting, turning over and walking! Yikes! (She just graduated from college so she got over it - but still....)

Love the pictures... she is a snuggle bunny that's for sure!

Hugs and prayers heading your way ... and maybe some of this warm Florida sunshine? We've had enough already!


mommatosena said...

Been anxiously waiting for your news of the day! WOW overload....I have to ask though isn't there some level of soothing drugs being admin'd at most times? I am not my most coordinated when libation on onboard...I think that the list of needs improvement are going to be things that come along really quickly. Super yeah for the Dr putting the foot down! and she is gorgeous! so really nothing else matters. Prayers for tomorrow!

Rachel said...

You know, the physical therapy sounds like a great thing for Sarah to help with... But yay for no changes!

Sheila Peuchaud said...

It sounds like most of her strengths are cognitive and most of her areas for growth are physical things that have physical causes - so hopefully once the physical impediments to her development are rectified, those will take care of themselves. The cognitive and physical are related of course, but having a strong cognitive base is a real advantage, I would imagine.