Tuesday, July 28, 2009

12 Month...er...13 Month...er...13+ Month Update

First off, let me apologize for being such a blog slacker these past few months.  Life has been crazy, but hopefully I'll be able to write more regularly now because - and here's big news for our family! - as of Saturday night (as soon as I finish Courtney and Matt's wedding!), I will be a stay-at-home-mom!  Wow!  This will be a major shift for the church and our family, but I feel like Becca's care is suffering (particularly as we are working to give her all the extra developmental support that she needs), so I'm ready to be a full-time mom instead of a full-time mom and part-time pastor.  I'm breathing easier just typing it.  Of course, it will mean some financial stress and sacrifices for our family (yeah...UM minister on minimum salary...good times), but, hey, we've got health insurance and a roof over our heads, so we'll still be doing better than many.  So, all of that is to say 1) Yay!  I don't have to juggle a toddler with special needs while trying to work from home anymore! and2) Hopefully I'll be able to satisfy your Becca fix with more regularity now.  Surely I'll be able to post at least weekly.  We'll see.  I know you need to hear about my girl as much as possible for your life to be complete.  ;)  And so, without further adieu, here's an update on Becca circa 1 year old.

Physical stats: at last measure (early July, perhaps), she was just over 13 pounds and right on 24 inches. 

We've drastically reduced the frequency of doctor's visits over the past few months.  She still sees her pediatrician (on the normal well-baby schedule) and 6 specialists, but the visits are getting farther and farther apart.  A review of systems - or specialities, really:

Endocrine - She sees the endocrinologist about every 3 months, mostly for growth issues now.  The last round of tests showed that her thyroid and adrenal functions are normal, so both of those medicines have been discontinued.  We've tossed around the idea of growth hormones (because she is still so tiny), but we wouldn't start them until around her 2nd birthday.  We're not sure what we'll do about them, though.  Much of it will come down to what insurance will cover, as they are pretty expensive (I think I've heard), but I've developed a habit of asking every woman I meet who is just at or under 5' tall if they would have wanted their parents to pursue injections had they had the option.  So far, most have said that haven't minded being short, but we'll keep kicking it around.  (According to the charts and the curve she is on now, Becca's projected height is somewhere around 4' 10" or 4' 11".)

Ears - She sees the ENT every 3 months as well...I think.  They are just treating her like any other kid with tubes at this point, though there may be plans to repeat a hearing screen or two just to make sure that all is still well.  I'd like there to be that plan, at least.  We'll see him again the end of August.  And he damn well better wash his hands this time.

Eyes - Also at the endof August, we'll have our follow-up visit with the ophthalmologist.  So far, her vision still seems great, but they want to keep an eye on her.  (Hahahahahaha...keep an eye on her...I'm so punny.)  Remember the whole question about septo-optic dysplasia?  The consensus now is that depending on how you define the diagnosis, she may or may not have it.  But it doesn't really matter whether she technically has it or not because all it would mean at this point is that she'd be in a higher risk category...and of course, we're already monitoring her for those risks.  Hence all the follow-up visits.

Cardiology - I think we may have been released from the cardiologist.  If so, it was pretty anticlimactic.  She had an echo done last month to check for the pulmonary hypertension that caused her such trouble in the NICU, and I guess it continues to look resolved.  I'm not sure because I actually never heard back from the doctor (which is unusual for him), and even when I stopped by the office, picked up a copy of the report, and requested that he call me, I still never heard from him.  As far as I can tell from the report (very technical), everything looks good, and I'm assuming that if it didn't, they would have called and had us come in or schedule a follow-up in a few months.  But it would be nice to get confirmation on that.  You know me.  But - if we are released, that's great!

Genetics - I think we see them every six months.  I'm not really sure what they are looking for.  Perhaps they just think she is an interesting case.  Which she is, of course.  On our last visit (in May?  June?) they took blood and sent it to Baylor for a really fancy test.  They basically looked at (almost) her entire chromosomal structure to see if anything was missing, mutated, or multiplied, thinking that it might give some explanation for either the septo-optic dysplasia or her general itty-bitty-ness, but, once again, everything came back clear.  That also means that she's negative for the most common form of dwarfism, but there is still a tiny, tiny possibility that she might have the more rare and less severe form of it.  Again, at this point, a diagnosis wouldn't matter too much.  Either way, she's itty bitty, though if she does have a form of dwarfism, she's got some additional risks for other complications.  It seems highly unlikely to me (and to the geneticist) that a baby who had such poor nutrition in the womb that clearly restricted her growth would also just happen to be a dwarf.  But stranger things have happened, I guess. 

We've got a new speciality on the horizon: plastic surgery.  Yep, my little diva might already be a candidate for plastic surgery.  (Don't worry, though - right now we're heavy on the plastics possibly and light on the surgery option.)  As you have probably noticed, our sweetie is macrocephalic; that is, she has a darn big head.  She always did; even in the ultrasounds in which every other part of her (and the composite) was hanging out in the 1st percentile, her head circumferencewas around the 18thpercentile.  Her smart little body was directing the few nutrients it was getting to the most vital part of her body - her brain.  (Now that I think of it, this is probably also why her belly was so big at first - because on the hierarchy of physical necessity, the other organs come in right behindthe brain.  Limbs are clearly just accessories.)  So it's always been ahead of her body.  Now, though, it's a full size ahead of the rest of her, as in her hat size is 6-9 months even though she's just now moving into 3-6 month clothing.  The growthcurve for her head is significantly sharper than both her weight and lengthcurves.  All of this led to some concern about just what might be growing in the big ole head of hers, so last monthwe had a 3-D CT scan done of her head.  (Which, by the way, was an interesting experience.  She woke up from the sedation before we even made it back to the CT room.  Oops.  I had to sprinkle her with wiffle dust to get her back to sleep in order to get the pictures they needed.  The high note, though, was that one of our former nurses from the NICU now works in the radiology department and got to take care of us.  That was fun.)  Aaanyway...they wanted to check for fluid on the brain (hydrocephalus) or "something else" - which meant "tumor," but everyone was afraid to actually say that to me.  We weren't actually too worried, though, as we figured that if there was something majorly wrong going on inside her skull, we'd see somekind of behavioral symptom.  But we wanted to check it out anyway, particularly after 3 physicians mentioned it.  All was clear, though!  But - andthis is where I finally get back around to the plastics doctor - her big head is really, really, really flat in the back now.  I could go on and on about why this might be, but I've decided not to worry about why (and thus blame myself for what I may or may not have been able to prevent).  The plastic surgeon, Dr. Kelly, is apparently THE guy in town re: infant head-shaping, so we are seeing him August 10th.  Before you can even schedule with him, though, you have to have a 3-D head ultrasound, though, so we were able to kill two birds with one stone.  So we may be looking at one of those cute little baby helmets that you've probably seen around.  This process might get dicey, though.  Apparently they are really expensive and most insurance plans won't cover them.  John and I aren't really concerned with the cosmetic implications of her flat head (she's a girl; she can just grow her hair out anyway), but the doctors are worried that it is so flat that it is restricting brain growth.  That would be a problem.  So we'll probably only pursue the head-shaping if Dr. Kelly declares it to be "medically-necessary."  The problem that I'm hearing about, though, is that often the doctors will consider it medically necessary but the insurance companies will not.  So I've already been in conversation with our insurance case manager (who is wonderful!), and hopefully if Becca does need the helmet, she can help us get it covered.  Apparently neither TennCare or Children's Special Services (a new program we found out that we are in the process of signing Becca up for) cover the helmets, so if it's going to happen, it's going to have to be through our private insurance.  Because I'm pretty sure it can't happen from our private bank account - see paragraph 1.  ;)  Dr. Kelly might not even want to do a helmet anyway.  As I understand it, within about 30 seconds of looking at Becca, he will decide that she either needs: a) nothing; b) a helmet; or c) surgery.  I had absolutely no idea what the surgery involves, but I'll let you know if I learn anything.

She sees the developmental physician at the NICUfollow-up clinic every 6 months (typical schedule would be 12 months now, but they are going to see her at 18 months to check in...possibly because I always manage to come up with so many questions) - but I'm going to have to save the developmental update for later.  Hopefully later tonight.  But don't hold your breath.  I'm employed for five more days, and I've got some work to do.  We'll see.  One anticipated benefit of the new stay at home mom (and not work another job from home) scenario - shorter blog posts.  That'd be nice, right?  :)

One picture, of course - here's Becca in the fabulous float my great-aunt Susie got her for her birthday.  Becca LOVES being in the pool and really, really loves being in the pool in her "boat."  She tries to bounce in it to make it rock.  Very cute.  And very fun for mom, too.  :)

Becca float


  1. Like always Becca looks adorable! So great to see you in Atlanta. Thanks for the great update and glad to hear she is doing so well. Love y'all.

  2. Just so you know, I would be happy to donate for a helmet for Becca, as I am sure many others addicted to this site would:) So, if insurance doesn't come to pass, and you do end up needing a helmet, throw it out there.

    Love ya


  3. Ditto on Marie's comment . . . let us know when you need help! So glad to hear all the updates. And how exciting for you that you will be staying home with Becca full-time. I know you have been stretched in a million directions this past year.


  4. "Stretched in a million different directions this past year" - yes. Yes, yes, yes, yes. Those words really resonate with me...perhaps confirmation that we are doing the right thing!

  5. You made some good points there. I did a search on the topic and found most people will agree with your blog.