Sunday, March 31, 2013

March for Babies 2013 Shirts

The t-shirts are here!  The t-shirts are here!  Well, not really *here* but here as in, at this link:

In an effort to simplify my life just a touch, I worked through TeeSpring to design the shirts.  Once 30 shirts have been ordered ("reserved") on the website, they will be produced and mailed directly to you fine folks.  They are $15 each, with all proceeds going to support our March for Babies team.  And, really, you NEED a Super Becca shirt.  I promise.  :) If you are local and want to save on shipping, you can pick them up from the church office once they come in.  If you want a shirt, you must order it through the link above by 8 pm CDT on Thursday.  Because we are ordering through this site, I won't be able to sneak in late orders.  

Have at it!  Support our team, spread the message of the March of Dimes, and be inspired by Super Becca wherever you go!

Saturday, March 23, 2013

March for Babies 2013

I'm going to be really honest with you here (and hope my March of Dimes peeps don't hate me).  Up until a few weeks ago, I was pretty close to blowing off this year's March for Babies.  I mean, Becca is nearly 5, we've got a nice big healthy baby now, too, we're busy, I'm exhausted, prematurity is pretty much behind us now, so why don't we move on and let some other folks pick up the slack?  Sure, I'll send a few e-mails out and our families will cough up some change, but maybe we can just leave it at that this year.

Yeah, you caught that, right?  "Prematurity is pretty much behind us?"

If only.

It's very typical for March of Dimes families to move on about 4-5 years after their brush with prematurity.  For a lot of families, prematurity is pretty much behind them by then.  Most preemies have graduated from therapy and are proudly wearing their 4T and 5T clothes, and moms and dads are surprising people by saying, "She was born 8 weeks early!  You'd never know, would you?"  And then there are some of us preemie families who are still receiving diagnoses. Like the large-ish one we were recently dealt.

Honestly (can I write any other way?), we had started to think of Becca as a "normal" child.*  For the past couple of years, we felt like we were on the border of the special needs classification.  Sure, she's got a feeding tube, but that's coming out soon, right?  Sure, she's still in therapy, but it's a lot less frequent.  Sure, she's in the special ed program, but at one point, her teacher suggested that she might even qualify to be in the program as a peer.  Surely we are just a year or so out from leaving those "needs" behind us and just having a "special" child!

When shit first hit the fan in my pregnancy with Becca and in her first weeks and months of life, we knew we were likely staring down the barrel of a lifetime of disabilities.  And we were on board.  Of course we would give her a lifetime of care!  Of course we would do anything she needed!  Of course we would completely rearrange our lives to do right by her!  Never for a moment did we stop pulling for her and her survival. And I don't regret for a second the choices we made to give a chance at life.  Not a second.

But really, now, five years later, I can say that I didn't have a clue what I was talking about then.  I had no idea what it was like to live day in and day out as a family with a child with special needs.  I had no idea how hard even the simplest things would be, not just for my child, but for our entire family.  How things like job opportunities, finances, family gatherings, housing, friendships, and the health of SuperDad and me, not to mention our marriage, would be affected by having a child with special needs.  It's not that I hadn't been around people with special needs before.  I had had many opportunities to glimpse into the life of families of kids with special needs.  It's just that it looks so different from the outside looking in.

I'm not trying to be all whiney and woe-is-me, and I'll spare you all the gloomy details of the day to day struggles of it all.  (Especially because even though we're back in a difficult spot at the moment, there is far more joy than gloom in our day to day.)  I'm just trying to say that unless you have been through a similar experience - and continue to live in it - you don't know what it's like.  And I know a lot of families whose kids are way more complicated than Becca.  And I don't have a clue what it is like for them.  But I guess I'm just asking you to trust me: having a child with special needs sucks. It doesn't suck because my kid sucks - she's friggin' awesome.  It sucks because I watch her have to work so so so so so hard for every bit of progress she makes.  I have to watch her hurt and try and fail and have other kids not understand her and get poked and prodded and told that this part and that part of her are broken. I have to hear her say, "Oh no!  Not my hospital aGAIN!"   I have to watch her live with the legacy of her early birth.  Every day. She can't shake it.  Even though I had convinced myself that she would, any day now.  She can't.  She won't.

With her latest diagnosis, Becca has landed squarely in the "special needs" category for the rest of her life.  She will always be hearing impaired.  That means she will always be "disabled."  Do I think it will hold her back?  Absolutely not.  "Special needs" and "disabled" are simply labels.  But it does mean that everything will, once again, be harder for her.  Forever.

So yeah, a few weeks ago, I thought we might actually slowly graduate from being a March of Dimes family. Not anymore.  While we are still trying to find the cause of Becca's progressive hearing loss, the overwhelming likelihood is that whatever reason we find, it will be traced back to her premature birth.  Whether it's due to structural abnormalities, ototoxic medicines or her underlying syndrome, the cause of those issues, at their root, is most likely that she was malnourished in the womb and then born neurologically immature.  My narrative for her story has gone from, "She had a really rough start, but she's doing amazingly well.  We expect that eventually you'll never know that she was born so early, except she'll probably always be small," to "She had a really rough start, but she's doing amazingly well.  She'll probably eventually catch up developmentally, but she's always going to have some issues, though she's smart as a whip."  (Note that I feel like I have to add the bit about her intelligence - because as soon as you say that someone has special needs, people always make assumptions about what exactly those needs are.)

In the end, that's not a big deal.  Not at all.  We have still been very, very lucky with her.  She is still amazing.  But I'm reminded that we can't leave it all behind.  So when I was thinking about themes for this year's walk, the one that kept rising to the top was, to put it delicately: "We march because...shit keeps happening."  Seriously.  But that's not something I want to put on a t-shirt and remember the year by, so I kept working on it.  And this year, Becca was able to help me with it.  (Smart as a whip, remember?)  She is way into superheroes these days and is always rescuing this or that creature.  And she continues to be the best big sister in the world and so in love with Baby James, not to mention a passionate fan of the March of Dimes (seriously - knows the logo and everything).  So it's only natural (when I put my bitterness aside ;) ) that this year's theme should be:

We march because...every baby needs a SUPERHERO!

And I've got just the superhero for you!

Becca is ready to be a superhero for babies, and she wants YOU to join her!  Click HERE to join our team and/or donate to help Becca save babies by helping them be born healthy.  Being born early and before your body, especially your brain and other organs, are ready, affects every facet of development - so the March of Dimes' research on fetal development affects just about literally every other health and development issue out there.  No kidding.  Every bodily system is touched by prematurity, so every system is touched by their research.  So supporting the March of Dimes really is like being a superhero for kids with all kinds of different issues.  It's the broad swoop of medical research charities.  And since everyone starts out as a baby, everyone can be a March of Dimes family, too.  Together, we can help all our special kids have a chance to dance and sing in their superhero capes - because wouldn't you give anything to make this possible?:

Love that kid.  And I know you do, too.  Please join us.

*Yes, in many ways, Becca is a normal child.  For more on what I mean by this comment, revisit my post On NOT Being Normal.  And when I can find it, I'll link to it.  :)

Sunday, March 10, 2013

Half Birthday!

Baby James is a whole half now!  At least, that's what Becca calls it.  Last week (or so - second child and all), he passed the 6-month mark, and he continues to be, well, perfect.  Or practically perfect in every way. Or practically perfect in every way except sleeping, particularly at night.  But good enough.

He's bumped around a little bit percentile-wise, but basically he's still a tad on the small side.  (Note: I said "small side" - not "itty bitty side." You know, around 25th percentile-ish.)  With a big head.  But even that was more normal at his last appointment.  He's still The Happiest Baby in the World, as long as somebody is looking at him and smiling.  (Super Dad and I only sometimes count as somebody.  But if it's someone other than us, he's smiling.  Not that he doesn't smile at us or like us - we just aren't as fascinating to him.)

He's working (HARD!)  on a tooth or two.  He's getting good at sitting up if you sit him up.  He's not showing any interest in crawling, and frankly, that's fine by me.  He's still good at spitting up.  His ears are tricky -- already had 2 infections -- but he hears great.  The ear infections led to antibiotics that have led to a raw little tushie, but he doesn't seem to mind that much, though it looks pretty awful.  His tushie is still covered by cloth diapers, and we continue to love them - and not having to spend a quarter every time he poops.

We're still breastfeeding like champs, even though I have now had mastitis FOUR times.  I've recently started taking lecithin supplements to help get that under control, so maybe we won't hit number 5.  Please God, let's not hit number 5.  He's started solid foods and loves them most of the time.  Since he started delicious things like sweet potatoes and (delicious according to him - EW) peas, he doesn't want to have much to do with his rice cereal.  I think part of it is that he doesn't like cold food, so I'm going to try warming it and see what happens.  But does he really need the cereal if he eats other food?  You tell me.

What I do know is that it is SOMUCHFUN to feed a baby who likes to eat.  I pick up the spoon, put food on it, and he opens his mouth.  Just like that!  Like he WANTS me to put the food in his mouth!  It's amazing - and makes me realize that Becca had feeding issues from the VERY beginning of solid foods.  I wish I had caught that and started feeding therapy earlier.  That might have saved a LOT of stress on our part, a lot of pressure on her part and possibly even the feeding tube.  But kicking ourselves over it does nothing.  But I'm certainly enjoying a kid who enjoys food.

James and Becca continue to be in love with each other.  Becca even tells me that she's going to marry Baby James when she grows up.  Why wouldn't she?  Daddy and I are married to each other - so of course we marry people in our family.  Too funny.  There is nothing that makes me happier than seeing them laughing and smiling at each other.  I pray that it continues when he starts crawling and stealing her Squinkies.  (Which, by the way, she won't take out of her room anymore because she doesn't want him to put them in his mouth and "get dead" from choking on them.  She's a good baby-proofer.)

Hopefully I'll remember to add some pictures to this post before it publishes - but if I don't, feel free to hound me.  Trust me, you want to see this handsome little man.  :)

p.s. I'm getting a LOT of spam comments, so I'm disabling anonymous comments.  Shouldn't be a big deal - just sign in with any Goggle log in to comment.  You don't have to sign up for Blogger specifically or anything.

Friday, March 8, 2013


Here's the graph of her hearing test results yesterday. Anything higher than 20 dB is considered a hearing loss. (These numbers are the quietest sound she can hear at each frequency.)

Thursday, March 7, 2013

Deaf Again

There's a lot to say in this post, so I'll get right to the point: Becca was diagnosed yesterday with permanent hearing loss.  Right now, she's testing at mild loss in her left ear and moderately-severe loss in her right ear.  They know it is permanent because it is nerve damage, not middle ear issues (though there are some of those going on, too).  She will need hearing aids, and we are in the process of setting up a series of appointments to confirm her levels, get them fitted, pick out sparkly ones, etc.  

We don't really know why her hearing has gotten progressively worse.  After her first set of tubes, she was hearing perfectly (or close to it).  In the past year, we've noticed that she's had trouble hearing, and then, as you know, she tested in the hearing loss range.  That test showed middle ear issues (fluid) and nerve damage, but we were hoping that the nerve damage findings were an anomaly due to the extreme amount of fluid in her ears.  Apparently it wasn't.  The middle ear part improved some with the tubes, but not completely.  One of her ear canals is full of blood (just gunk draining out through the tube - nothing they are concerned about except that it's acting like a big glob of wax and plugging that ear up), so we are starting drops to help clear that out  before her next appointment.  The most likely reason her hearing has deteriorated is that the ototoxic medicines and high bilirubin from when she was in the NICU have caused delayed hearing loss.  That sounds very weird, but apparently it's not unheard of.  The audiologist said that it's kind of like the little hair cells got smooshed down some then and the damage compounds as time goes on.  If that's the case, her hearing will probably continue to deteriorate.  (Even if it does, the treatment is basically the same - just keep adjusting the aids to provide more support.)  It may be that there are some structural issues in the middle ear that would predispose her to hearing loss - something about the auditory nerve canal or something or other that could suffer further damage through activities like football, dancing, gymnastics, standing on her head while watching t.v. (her typical pose), etc.  If that's the case, we'd have to try to keep her from doing those activities, but the damage won't necessarily get worse.  The other possibility out there is that there is some genetic issue that we haven't caught yet.  I don't think genetic in this respect means hereditary - but that there is something askew in her genes (mutations or such).  Along these lines, the hearing loss could be related to her septo-optic dysplasia diagnosis.  If you recall, we aren't really sure if she has that diagnosis (because she only shows some signs of the syndrome), but the part of her brain that she is missing is her septum pellucidim, and we don't really know what it does - so when something like this crops up, there's always a chance that it relates to that missing piece, I guess.  Another possibility is that she had CMV when she was a baby and showed no symptoms of it (apparently this can happen), but having the virus as a baby can lead to delayed-onset hearing loss.

So here's where we go from here:
  • Give drops in the right ear to try to clear the blood clot out of the canal.
  • Go back to our old genetics doctor for them to run further tests.  (I know nothing about what these are.)
  • Go back to the ENT/audiology in 4-6 weeks to see if the blood is gone and to retest her hearing to try to replicate these results.
  • On that same day, we'll do a CT scan of her temporal area so that they can get a better look at the structures of her middle ear.
  •  If we don't get all the way through the hearing test with good participation from Becca, we'll go into the main/adult hearing clinic (Bill Wilkerson Center) for a more extended hearing test.
  • Meet with an audiologist for a hearing aid selection appointment - pick out the devices, pick colors, get fitted, order the aids.
  • When they come in, we'll go back in to have them fitted, adjusted, etc.
  • For the next year at least, we'll do hearing tests every 3-4 months.  If her hearing has stabilized, we'll reduce the frequency of tests after a year; if it still seems to be changing, we'll continue to go more frequently.
John and I are kind of reeling from this diagnosis - not that it was completely unexpected.  We're worried about the logistics of it all (more appointments, more costs (since most insurance plans don't cover hearing aids, which is ridiculous), possibly more therapy if her speech ends up being affected (thankfully, though, she was hearing in the most critical stages of language development), more special ed needs).  We're sad that there is more we have to "do to" her that she won't like.  We just want to leave the kid alone for once.  We're discouraged that every time it seems like she's making lots of progress (SHE'S POTTY TRAINED!) and starting to leave prematurity behind, something else crops up.  She was getting so close to "normal" and fitting in.  I'm particularly sad that this is coming just as she is starting to notice that she is different than her peers with her button and all.  We're mostly sad that this is a disability that will never go away.  There's no way to "therapize" our way out of this.  She will always be hearing impaired.

Obviously, things could be much worse.  We know we are lucky beyond measure that she is alive and doing as well as she is.  And we could have received a diagnosis of something life-threatening like cancer.  But right now that really doesn't soften the blow that she will always be disabled in this way.  And we know that in the world of disabilities, hearing loss is not a huge deal.  We've seen our friend Sarah live with it for a long time now, and she gets by just fine.  But it's especially hard to find out something like this so late in the prematurity game.  I mean, we were prepared for her to be deaf when she was an infant.  She came home deaf, and we knew there was a good chance that she's always be deaf.  But then her hearing turned out okay - and that was great!  We thought we had dodged that bullet.  It's just weird and unsettling for it to come up now, when she is 4 and a half.  B's a tough cookie and will do fine in the long run...I just hate that it's one. more. THING. for her little self.