Wednesday, November 19, 2008

Chubby Bunny

Hello, friends!

We just got back from the pediatrician, and Becca is doing great!  She must have listened all those times Heather told her to "think chubby," because she's over 6 pounds now!  Wow!  She is 17.75 inches as well.  She's now as big as a small newborn - at 5 months old!  ;)  I've dropped her down to the 26-calorie recipe (breastmilk + preemie formula), and she's slightly less miserable (she was really gassy before, to the point that she was crying nearly the entire time she was awake - miserable for all of us!) but still growing well.  She's doing pretty well at night.  Our pediatrician (Dr. JoAnn Cook Collins, who is fabulous!) has given us permission to let her (Becca, that is) sleep at night (instead of waking her every 4 hours to feed), and she's slept up to 6 hours at once.  She usually still wakes up between 4.5 and 5 hours.  Still, that's not too bad.  And it would be downright good if wasn't an insomniac!  I'm having trouble sleeping even when she is O-U-T.  Except in the mornings.  This morning John let me sleep until 11, which was awesome.  Clearly, I'm supposed to be nocturnal.  John has gone back to work, so we're trying to figure out the best way to make it all happen.  I still have a couple of weeks before returning to Sunday nights with the youth and then another few weeks before resuming all my work responsibilities.  Then the real juggling act will begin, since we will be doing the childcare ourselves, while working.  I'm not sure how it's all going to work right now, but I don't have to know yet, I guess.  I'd love to chat with some of you moms who have recently had to make the transition back into the working world.  It's a little overwhelming to think about - and I'm only working part-time ("part-time" church work...riiiight...).

Aaaaaaanyway....we go back to Vandy tomorrow for two appointments.  In the morning, we'll see the anesthesiologists, who just want to check her out and get to know her history a little better before her surgery in January.  In the afternoon, we'll have our first visit with the endocrinologists, who will follow her the rest of her life.  I mean, these particular pediatric endocrinologists won't follow her forever, but since her hypothyroidism appears to be chronic, she will have to be followed by endocrinology throughout her life.  It seems to be a pretty easy condition to manage, but if it's not managed well, it can cause serious problems, so I'm excited to meet the docs tomorrow.  We'll also get to talk with them some about her other chronic issue, one that I don't think I've mentioned here yet. 

Just before Becca came home, we finally (after several months of suspicions) got a ?definitive? diagnosis from her MRI.  Becca has what is called septo-optic dysplasia.  Basically, she's missing a part of her brain, which results in a rare syndrome.  It can manifest itself in 3 typical ways: in endocrine issues, in visual impairment or blindness, and/or in mental retardation or some degree of neurological impairment.  She could have all three problems or just one (or two or none, but we know she's got the endocrine issues, so that's at least one).  As I said, she's got chronic hypothyroidism and her pituitary gland shows some abnormalities.  We're pretty confident that she has fairly high mental function, as she seems to be developmentally on track based on her corrected age (though, of course, it's really far too early to tell).  Besides, just the fact that she did so well physically is an indication that her brain is in pretty good shape as it, of course, holds all the physical functions together.  Right now, she's done well on her vision test, but they have been looking specifically for vascularization (because oxygen therapy can interfere with the eye development) and not for optic nerve displaysia ("displaysia," by the way, just means that something is malformed).  Very early on the ophthalmologists tried to look at her optic nerves, and what they saw looked good, but it was really too early to see.  She's definitely seeing now, as she is VERY into studying her environment (especially anything that moves - she LOVES the ceiling fans) and tracks toys, etc.  Unfortunately, though, the blindness can develop anytime in the first 8 months (and it's not clear whether that's 8 months corrected or chronological).  When I think about it, I get pretty nervous.  It's just so hard to function in our society blind.  So much of our functioning and independence relies on sight.  But, I also know Becca and know that she's up for just about any challenge ahead of her.  She's a tough cookie.  I would rather spare her this particular challenge, though.  She has some symptoms (her eyes shake involuntarily occasionally), but hopefully these are just remnants of her prematurity that she will grow out of.  We do have a regular preemie follow-up appointment scheduled with ophthalmology early next year, but depending on what the endocrinologists think tomorrow, we may try to move that appointment up.  (Apparently, your endocrine system affects, oh, everything in your body, so they are the ones to talk to about these rare conditions.  Dr. Collins called them "the smartest doctors in the hospital" because they have to know about, um, everything.)

We'll let you know how things go tomorrow.  In the meantime, enjoy these pictures from Becca's fancy dress photo shoot!  Also - Becca finding her thumb and pics with her boyfriend Hunter Snow - who was born 2 days after Becca's due date!  Wow!

Oh - Becca's blowing bubbles and smiling occasionally now.  So cute.  She smiles most often when sleeping and eating - that's my girl!  :)


Thursday, November 6, 2008

Livin' the Dream!

Hi, guys!

I'll have to give a more full update later, but I wanted to jump on here really quickly and say that we are settled into a routine, getting several hours of sleep a night, and doing great!  We go back to the pediatrician tomorrow, so I'll have growth stats for you then.

Becca's a fun - and stinky! - girl!