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.

I'm Not Dead Yet!

Yes, we're busy. As a friend said recently, "One is one; two is ten." Two full-time clergy parents, two kids, one an infant and one with special needs, and a substantial commute...makes for a busy family. Livin' the dream! And loving it! Just not writing about it.

 But - today Becca has the easiest surgery ever. Long story short, Becca has had fluid in her ears for a few months now, and last fall actually tested at the moderately-severe hearing impaired level because there was so much fluid, her eardrum couldn't move. We FINALLY got them fixed today. Love the doctor and hospital, hate the wait.

 Details - like I said, the easiest surgery ever. This is her third set of tubes, but the first that was placed without another surgery going on. (Set one was during her hernia repair and sedated ABR, set two also involved removing her adenoids.) Since it's such a simple procedure, she didn't even have to be intubated. She just had to breath the "special air" to make her go to sleep and woke up in recovery a few minutes later. I even convinced them to change out her Mic-Key button while she was still under. One stop shopping.

 You may remember that Becca usually experiences "emergence delirium" when she wakes up from general anesthesia, but, perhaps because they just used gas instead of IV anesthetics (like propyphol - remember that drug?), she woke up just like she normally does in the morning - slowly and groggily (just like her mama!). I FINALLY convinced the nurses and doctors to FORTHELOVEOFALLTHINGSGOODANDHOLY get me back to recovery before she woke up, and that seemed to help - I was the first one she saw when she woke up. I like to think that seeing my face before seeing a stranger (however nice the nurses are), a bunch of medical equipment around and an IV in her arm made her much more comfortable. She looked at me, sighed, and said, "Mama, I feel a widdle bit funny." We hung around for a while while she drank and ate a "widdle bit," and I pumped (pumping at Vandy Children's...that brought back memories!), and then headed out to Pancake Pantry. Easy peasy!

 And when I say, "we," I mean Becca, me and Auntie Ya, one of my bestest friends in the whole wide world and the one I can go for years without talking to (which we've done because we suck at long distance) and pick up right where we left off when we are together (which we've gotten to do because she moved back to Nashville! WOOOHOOO!). John stayed home with Baby James so we didn't have to lug him in there at the buttcrack of dawn and expose him to heaven knows what, so Auntie Ya met us in the holding area pre-op. She was, of course, SUPER helpful (the 2:1 adult:child ratio is MAGIC!) and was super impressed with how chill Becca was with the whole thing. Becca was joking with doctors, complaining that they toys they brought her didn't work, telling everyone about how they were going to "fix my ears 'cause dere's WATER in dem!" - she's so at home at the hospital, which is good and bad - today it was good. When they were wheeling her back to the OR, we heard her yelling at people, "Get outta da way! Watch out!" I'm tellin' you, she runs that place.

 Have I mentioned that Vanderbilt totally stole their current marketing campaign from Becca, who always says, "Dat's MY hospital!" whenever she sees the VCH logo? Today she proved it again! And even though it was a ginormous PITA to wait 2 months+ to get her ears fixed, it was great to do it there and know that she was in such good hands and in her familiar place. We even had some of the same nurses we've had with previous surgeries (yeah, we know the surgical staff - great, right? ;)) and one of them was just astounded at how well she is doing! Seeing medical folks' surprise at her...vivaciousness? is always a good reminder to me of how far she's come, even though it's easy to get frustrated with the ongoing therapies, special ed services, and (ugh ugh ugh ugh ugh) attempted feeding tube weaning. She really is an amazing kid!

Letter to Santa

So far...

Election Day

Becca has been hearing a lot about this election, as her mama is VERY interested in it and on maternity leave. Local schools are out today, so I have the pleasure? of taking both James and Becca with me to vote. Becca is totally excited about it.

She was really bummed when we told her that she didn't get to vote, so John made her a voting booth. She voted for Barack Obama (a step up from the Broccoli Obama guy she was originally voting for).

Daddy had to take a turn, too. And Sasha, out champion photo bomber, He voted for Becca Hill! Just don't tell her that she isn't old enough to be president, either...

Numbers

One less stop to make while grocery shopping - blood pressure was 117/79 at my six-week appointment! Officially fully recovered from the pregnancy-induced hypertension!

Wow.

I know I am a crappy blogger these days, but I have got to pop in really quickly and tell you that my little girl, you know, the one who was born at 28 week and weighed less than a pound and had a life expectancy of 2-3 MINUTES, today played in a soccer game AND competed in a horse show. Take that, prematurity! Granted, she is a 4-year-old playing soccer in the 3-year-old league and the horse show was with her therapeutic riding program for kids with special needs, but I am going to go out on a limb here and say that her quality of life has turned out to be pretty damn good. I think everyone who was/is a part of team Becca deserves a standing ovation on this one. So our dear nurses, doctors, therapists, teachers and caregivers - take a bow. John and I will take one, too - quickly, before we have to get this super kid to her next activity.

The Upside of Oversupply

Lots of milk. The downside? Difficulty latching, engorgement, plugged ducts, mastitis, and lots of pumping and ice packs. It has been a roller coaster...the glorious life of a breast feeding mom. With super boobs.