Hearing Aids!

We've got them!  We picked them up and learned all about them on Thursday.  Becca was super excited about them.  They are pink behind the ear with translucent pink earmolds with sparkles.  Very pretty.  We are getting the hang of getting them in so they will stay.  She's done pretty well adjusting to all the noise in the world.  On our way from the office to the car, she said, "Mommy, why is da elwabator [elevator] making noise?"  Because they always have, baby.  Welcome to the world.

There have been a few times that she has been overwhelmed.  At a birthday party on Saturday, she pulled me out of the den and said, "Mommy, I just want to sit wif you in da different room all by ourselves."  So we did for a few minutes, then went back to the action.  No biggie.  The volume adjustment and on/off switches have been deactivated so that she doesn't play with them.  When she gets older, she will have access to them to adjust as needed.

John and I are thrilled not to have to yell and repeat ourselves allthetime.  So much less stressful.  There's something about an uncooperative 4-year-old being much more bearable when you don't have to start out yelling.  This doesn't mean, of course, that she listens all the time.  Several times we've caught her in the regular, "What did you say?" loop - she asks, we repeat; she asks, we repeat; she asks, we repeat.  Finally I say to her, "Becca, I think you can hear me now.  Are you listening?"  With the obnoxious honesty of a 4-year-old, she'll say, "No, I'm not wistening."  So now we have a new rule: no asking questions unless you are going to listen to the answer.

John filmed her reaction the first time they put the hearing aids on and turned them on.  The audiologist put them both in her ears before turning them on.  Once they are turned on, it takes about a minute for them to be ready to go - they make a little chime sound (the pixie dust sound, I'm told ;) ) and then go live.  I think you'll be able to tell in the video when they start working for her.  We are so lucky to have the technology and access to care to help her hear!  Enjoy the video.  Life is good.

Make a video - it's fun, easy and free!
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Upcoming: Surgery #4

Yup, we're going in for another surgery this week.

At last week's audiology and ENT appointments, we determined that Becca is again having trouble hearing because she has fluid behind her eardrum. (This is the same issue that made her functionally deaf by the end of her NICU stay.) Her first set of tubes was placed at the beginning of February 2009, and her hearing dramatically improved instantaneously. Since then, we've gone through, "Hmmmm...I can't see the tubes...but they are so small, I'm not sure I would..." and, "Well, I don't know if she's hearing and just doesn't want to participate in the tests...or if she's just not hearing..." and (from our now ex-ENT), "She's got irreversible nerve damage; let's get her fitted for hearing aids ASAP," and, "No, let's sedate her and test her hearing first [this past February]...Ha! He's wrong!" and, "Hmmm....maybe she does have fluid again...let's give it a few months and see if it drains..." and then, last week, "Yep, the tubes are definitely gone, and she's definitely got fluid keeping her eardrums from moving, so it's time for surgery."

Well, at least we know we covered all our bases. :)

So, on Thursday morning at the crack of dawn (who am I kidding - before dawn!), the three of us will head up to Vandy, where Dr. Goudy will place a new set of tubes and remove Becca's adenoids. Right now we don't know if her adenoids are enlarged or anything, but when a kid gets a second set of tubes (most don't need a second), removing the adenoids reduces the chance of needing a third set by 50%. The hope, then, is that by doing both now we'll give her itty bitty ears a better chance of draining the fluid so that a) she stops getting ear infections (though she hasn't had that many...maybe 3 this year); and b) her eardrum can move, thus enabling her to hear clearly. She obviously still hears, but we have noticed that her new words are not very clear, and I'm putting the pieces together to realize that the muddled hearing might be the explanation for the mildly-delayed expressive language score we saw in her Bayley exam.

We're feeling good about the surgery. The difficult bit is figuring out how to maintain her blood sugar when she won't be getting all of her overnight tube feeding on Wednesday night. (Before surgery you have to stop all food, milk, formula, etc at midnight.) Remember, when she misses a night feeding, she gets hypoglycemic - and that's when she had her seizure in the hospital. We are working with the anesthesiologist, our endocrinologist, and our pediatrician to come up with a plan (other than mama putting the beatdown on any nurse who says that she doesn't need IV fluids, and the extra-sugary ones, to boot), and our current thought is to stop her formula at midnight and switch over to apple juice (through the tube, via the pump) until we have to stop all fluids at 4 am. While she's in surgery at 8, they will place an IV and begin fluids (D-10), which we will keep giving her the whole time she's in recovery (about 5 hours, probably). I don't know if this will be enough, since apple juice is not nearly as rich as her formula, but we'll also be checking her blood sugar periodically to make sure she's doing okay.

If none of the ear stuff made sense to you, here's a diagram that may help. (The tubes go where the eustachian tubes are labelled - they help kids with small or underdeveloped eustachian tubes drain fluid. See how enlarged adenoids could also block the tubes?) If you have specific questions, feel free to ask in a comment. Also, if you have experience with adenoid surgery, I'd love to hear any tips or stories! I hear the post-op breath is AWFUL! And, as always, we'd appreciate everyone's prayers, for the prep time/feeding issues, the surgery, and the post-anesthesia hysteria we tend to see with Becca.

The Poop Doctor

Last week we saw two new specialists and added a specialty (bringing the grand total of specialties to 10 and the current total to 6). I am a big fan of both new doctors!

First, we saw our new ENT. I'm sure you remember that I was never happy with our original ENT, and a few months ago, I finally made the switch. Despite a few awkward questions about my reasons behind requesting a change, we had a good appointment, though we are playing more of the wait-and-see game. Becca was still getting over her cold, so, not surprisingly, she had fluid in her ears. Neither of her tubes are in the right place (though they are both lodged in her ears somewhere), so neither is functioning. The question, then, is whether her ear is normally draining the fluid on its own but was having trouble because of the cold or if she still needs tubes. Dr. Goudy (who is, as everyone said, quite nice to look at ;) ) wants to wait 10 weeks and check her ears again and give her another hearing test (the kind that she keeps failing even though we know she hears). If the fluid is going to drain on its own, it will have done it by then; if not, we need a new set of tubes. At this point, if they give her a new set of tubes, they will go ahead and remove her adenoids as well. Apparently doing so reduces the risk of needed a third set of tubes by 50%. Hopefully, though, when we go back her ears will be clear, and we'll avoid another surgery.

The next day we hiked all the way down to Cool Springs (which won't be much of a hike next month!) to see the gastroenterologist (which, by the way, I think I just spelled correctly on my first attempt!). We had waited four months for this appointment, and if we wanted to be seen at the main hospital, it would have taken another two months. That's annoying. Six months is a long time in a toddler's life, especially if the kid in question is itty bitty and not growing well. This is my message, then: pediatric gastroenterologists, please come to Nashville! Save our FTT (failure to thrive) babies and make bookoos of money at the same time!

It was definitely worth the wait and the drive to see Dr. Moulton, though. He might be my new favorite specialist. After waiting two miserable hours at the ENT the day before, I came to this appointment armed with my netbook and an Elmo movie downloaded to iTunes. (Why is it that specialists are only available during naptime? Seriously, it wasn't even a scheduling issue - the ENT's only in the clinic in the afternoon!) I was afraid this was going to get particularly ugly, as we had driven directly from an hour of physical therapy. I was seriously tossing chicken nuggets back to her on the way there; it was just that kind of day. However, they had us back in a room before I could even finish filling out the initial paperwork. After the nurse got Becca weighed in, etc (at a chunky 15 pounds, 10 ounces - back to where she was before the cold), I asked her to watch her for a second while I made a quick run to the bathroom. (It was my first chance since leaving the house several hours ago - add that to the list of things I didn't realize I would miss when I became a mother!) By the time I got back, the doctor was in the room, pulling her chart up. He introduced himself, shook my hand, and said, "Tell me about Becca's prior medical history."

Well.

That took some time. And he listened the entire time, nodding and making "listening noises" while typing it all into the computer. Good thing they weren't already running behind. I had a lot to say. I mean, remember when we first started talking about growth? Oh yeah, in week seventeen of the pregnancy. That would be...let me count...784 days ago. And we've probably talked about her growth every single one of those 784 days. First off, we had to correct a mistake in the computer: some silly doctor along the way had messed up her chart by charting - in her medical record! - that she was born at 36 weeks. If only! Aaaanyway...I filled him in on everything from the crappy placenta (a.k.a. The Root of All Evil) to our current progress in feeding therapy. As I talked, I kept thinking, "Wow, we probably should have gone ahead and seen these guys already!" I think I've been avoiding it because I've been afraid they'd want to give her a feeding tube, and I just really don't want that to happen.

But...it's back on the table.

After listening attentively, Dr. Moulton said, "Okay. You know a lot about all of this. How can I help you?" to which I replied, "Make her grow!" And I begged him not to cut a hole in her stomach. Okay, not exactly, but I did ask if I still needed to be worried about a g-tube...which he thinks could still be an option. Poop (but more on poop to come!).

Basically, we're now trying to answer two questions:

1. Is she getting enough calories? She needs around 700 calories a day. By my estimation, she's drinking around 500 calories a day (in her formula). That leaves 200 calories in other food. I can eat without even realizing it, but that's a lot for her. Plus, you have to subtract anything she throws up (which still happens every few days). I think she's getting enough calories at this point, but we haven't been tracking it. Dr. Moulton is having us keep a food journal for three days, which his nutritionist will analyze (and is giving me flashbacks of my Weight Watchers days). If she's not getting enough calories, we'll likely explore the g-tube option some more. (I don't think it's as simple as whether or not she got 2100 calories in the past three days, but the journal will be a starting point.)
2. What is her body doing with the calories she gets? To start to answer this question, we're heading in to Vandy tomorrow to have an upper-GI study done. Basically, Becca will drink some glow-in-the-dark milk, and they will take pictures of what happens as it goes down. It should be a pretty simple process and will give us a pretty good idea as to what is going on with her reflux these days. But that's not all! In order to look at whether or not her body is processing her food appropriately, they've got to look at what goes in and what comes out. Yep, we're collecting poop. We've got to take it in tomorrow, but the little princess has decided that she doesn't need to poop today. Little punk. I actually want her to poop, and she won't. It's like being back in the NICU. Anyone have an itty bitty glycerin suppository? Perhaps she'll poop in the morning, but since she can't have anything to eat or drink, I'm guessing we'll have to make a special trip in to town to deliver a Tupperware full of turds. (Pardon me. I just had to say that.)

There you go. The point, I guess, is that she's still not growing as well as they would like, even though she's been picking up lots of steam these past several weeks. She's jumped into 6-9 month clothes (though we still have a few favorite 3-6 month outfits in the mix...I have problems with change), and she's definitely looking more and more like a big girl. And she's eating better, too (not great, but better). Today at therapy, she had 15 blueberries (her current favorite), 2 chicken nuggets, 2 strawberries, 9 craisens (which, by the way, the Blogger spell-check wants to changes to "craigslist"), 3 grapes, and 3 blackberries. That's a great meal, right?! Even when you include her recent growth, though, her overall weight curve still isn't making up much (if any) ground in relation to typical growth curves. I'm not talking about getting her from the 10th to the 50th percentile...I'm talking about still being several pounds below the 3rd percentile for her adjusted age.

It will be interesting to see how all of these tests come out. We'll see Dr. Moulton again in two months (supposedly - though they "don't have his schedule that far in advance" even though I booked our initial appointment four months in advance - weird, but now they will have to deal with me as a return patient if they try to put us off for another four months - and you know mama won't play that game!) and should get the results of the tests in the next little while. (I mean...not that I'll be calling every day until they tell me something...no, not me...) We'll also see a nutritionist at our next appointment, and I think we'll also go ahead and see the nutritionist in the NICU follow-up clinic next month, too. John and I would still really like to avoid a feeding tube, but every mom that I've talked to who has made that decision for her child has been glad they did because it allows you to relax about their food and nutrition, etc. But still, she's collected enough scars in her sweet little life. And if we were going to get a feeding tube, it would have been nice to have gotten it when she was a baby and waking up at all hours of the night to eat. It kind of seems like we'd be backtracking to get one now when she's making improvements in her eating...but we'll do what we need to do. But seriously, please don't take a scalpel to this pretty belly!

p.s. In other news, we are doing the final walk-through on our house after the study tomorrow, and we close on Friday! Wow!

Update

Becca's test has been delayed 4 hours because some goober in the pre-op clinic told me that all juices counted as clear liquids, even though, I now know, only apple juice does. Oops. They also told the family that was scheduled before us the same thing...so they were also delayed due to orange juice. Ugh. The good thing is that our fabulous audiologist is willing to wait with us and will still run the test today, even though she otherwise would have gotten to go home early because of the snow. Thank goodness! Their next opening wasn't until March, and I am NOT willing to wait that long! Becca is doing great, considering that she hasn't eaten since last night (except those two sips of [non-clear] V8 juice this morning). She did get some [clear] apple juice until a hour ago, so that helped. She has been signing, "More, please," all day, especially this morning. Very funny. And cute. And pitiful.

So, I'll try to post with results as soon as I can!

Hearing Test Eve

Tomorrow's the big day! Becca will have her ABR (auditory brainstem response) test tomorrow morning at 11:30. It should be done by 1, and we'll know results right away. I'll post as soon as I can. (Remember, she'll have to wake up from sedation and everything, so it may take a while.) If you are the praying kind, we'd appreciate your prayers for her safety, since general anesthesia always carries some risks (though she had no problem a year ago at her last surgery) and for clarity in the results. We feel confident that we can handle whatever diagnosis comes our way tomorrow, but we really, really want some answers. (You may have picked up on that one.)

Oh, and our favorite audiologist is the one running the test! Hooray!

I'll be in touch!

Can You Hear Me Now?

Turns out, that's still the question.

We saw the ENT yesterday, and he diagnosed Becca with permanent moderate hearing loss due to nerve damage. He has started the process for her to get hearing aids. We have an ABR scheduled for January 29th. (The ABR is the in-depth hearing test for which Becca has to be sedated. It's the same test she had last winter and again immediately after she had her tubes placed last February.)

HOWEVER, after talking to the audiologist this morning, she thinks he jumped the gun on making the diagnosis and wants to wait and see what the ABR says before we make any diagnosis.

That's the short version. Here's a bit more detail, for those of you who are interested:

I think we may have to change ENT's. You know how I've felt about this particular doctor in the past, and now I am pretty sure that he and I just cannot work well together. He is, according to everyone else familiar with him that I've talked, the BEST in the city, but somehow we always fail to communicate. Yesterday was no exception.

After waiting forever, we finally got in to see the ENT. He looked in her ears (still not washing his hands - hello, RSV season!), saw lots of wax in one and that the other tube "wasn't functioning," cleaned the wax out and looked again. (The wax cleaning involved a lot of manhandling by me and a nurse. Unpleasant.) He saw that both her eardrums were moving like they should be. (Even though one tube wasn't "functioning"...hmmm...according to our fabulous pediatrician, whom I consulted this morning because I was so confused, that probably means that that ear is draining on its own and Becca might have outgrown the need for a tube in that ear). He looked at her recent hearing tests, on which she scored poorly, showing a moderate loss, and ordered another test, the OAE (which is the same test they use for newborn screening).

We shifted to another waiting area, batted away snotty kid hands, and then saw our favorite audiologist, Mary. She worked with Becca in the NICU and through last fall and winter when the tubes were placed. Since then, we have been bumped around to several different audiologists (they have a rotating schedule), which has been frustrating. I've really had to be Becca's advocate here and make sure they are looking at everything together, but hearing is so technical that it's hard for me to follow everything they are saying, looking for, and testing. So I was glad to be back with Mary, who knows Becca, knows her stuff, and knows how to communicate with parents. We did the test (also involving manhandling, but Mary helped distract Becca with puppets and bubbles!), and she failed in both ears. (It's a pass/fail test.) Mary said that the test, while objective, isn't entirely reliable because the tubes can muffle the feedback response for which they are testing. She recommended that we do a sedated ABR and see what we find. No mention of permanent loss. She talks to the doctor, who tells her that he is not going to replace the non-functioning tube, so we will have to sedate her for the ABR alone. We decide to go ahead with it anyway so we can get a definitive answer (even though we thought we had a definitive answer last February).

We go back to the second waiting area, continue to bat away snotty hands (hooray for small spaces with germy toddlers in RSV season!), and then finally see the ENT again to get a plan. He says, "Well, I'll see you back in 4-6 months to check the tubes, and we'll do the hearing aids and see where we are." Um, what? Sorry? Hearing aids? I mean, I knew that this was a possibility, but how did we get there all of a sudden? I, of course, ask him for more information, and he replies, "Oh, she's got a moderate hearing loss due to nerve damage, and that requires hearing aids." I ask if it's permanent, and he says yes.

What? Is this how you tell parents that their child has a life-long disability? Were you even actually going to mention it at all to me if I hadn't asked? I'm just supposed to say, "Oh, okay, hearing aids, sounds fun." WTF?

I ask him for more information, and he launches into an extremely detailed explanation of the hearing process and the structures of the ear, complete with diagrams. I just wanted to know how and why he was certain about this diagnosis. I mean, if she had nerve damage, wouldn't she have already had it last year? She was 7 months old and out of the NICU for 3 months at her last ABR. Why would it just now show up? I never got that explanation. At this point I was so exhausted, confused, frustrated, and scared that I couldn't even wrap my mind around the right questions to ask, let alone his scientifically intricate lectures. Unfortunately, at this point, it was the end of the day (even though our original appointment was at 2:00!), and the audiologist -- you know, the doctor who actually speaks English, not doctor-ese -- had already left for a meeting.

The really odd thing is, I still kind of like this ENT. He's kind of charming. But incredibly frustrating. And not a good match, parent-to-doctor. I can see how many parents like him, particularly if their kid has clear-cut needs. But I think Becca and I are through with him. Or at least I am. Maybe John gets his appointments from now on.

I tried to recollect all of this for John on the way home, sitting in rush hour traffic with a toddler who just spent her entire naptime stuck in a stroller or being poked and prodded and manhandled and having things shoved into her tiny ears. John asks me the obvious questions that I hadn't been able to articulate in the doctor's office, and I feel like I've let him down when I don't have the answers. I mean, this is my job! I am the one who goes to these appointments, but he is just as much a parent as I am, so he deserves all the information. John and I both take great comfort in understanding what is going on with Becca medically; we always have. If we know what we are facing, it's much easier to deal with. Normally, I'm pretty good about filling him in. Not yesterday. We spend the evening (post-church and post-post-church meeting) trying to figure out what is going on...and I, at least, found myself asking, "Can't she just get a break?"

Reality check: Becca has gotten a lot of breaks, considering. But she shouldn't have needed those breaks, and she wouldn't have, if she had gotten a break in the first place. (Wow, did you follow that?) And I'm really not worried about this particular diagnosis, even if it does turn out to be true. My dear, dear friend Sarah (a.k.a. "Hunter's mom" and Becca's future mother-in-law) has moderate to severe hearing loss and has been in hearing aids since she was 22 months old. Her mom is chock full of information about raising kids with hearing loss. (Sarah's older sister also has the same kind of loss.) And both Sarah and her sister, Kelly (Hi, Kelly! Do you read the blog still?), are wonderful, beautiful, highly-functioning individuals, and they have both earned their Master's Degree in helping professions. Because of their example, their friendship, and Becca's (literal!) never-say-die attitude, I have no doubts that Becca will face and overcome this challenge like every other one she has met.

But hasn't she had enough challenges in her 26-month existence to last a lifetime?

Of course she has. But that's not how life works. And if she's going to have another challenge, frankly, I'm glad that it's this one. She can do this. We can do this. And besides, hearing aids come in pink...and with glitter.

This morning, I was eager to get more answers, so I left a message for the audiologist and Dr. Collins, our pediatrician and heard back from both quickly. (I really love good doctors now. We've been spoiled. I love good doctors...and we have several of them.) Dr. Collins didn't have a lot of answers, but she did help clarify what we did know and was generally encouraging about Becca's hearing and her development in general. Then Mary (the audiologist) called and made me feel worlds better. As I said earlier, she is not ready to give Becca a diagnosis. It is possible to explain away all the poor test results: the tubes can interfere and the behavior testing isn't strictly objective and depends a great deal on how much Becca participates. But she also said that it is possible that Becca's hearing has gotten progressively worse since last February's good ABR. We know that she's at a high risk for hearing loss for several reasons, all related to her prematurity: she was deprived of oxygen, she developed high bilirubin, she had pulmonary hypertension, she was on a lot of heavy-duty antibiotics...and there are probably other risk factors that I'm leaving out. We had assumed that if these factors were going to affect her, they would have done so already. I mean, she has been on the antibiotics for 15 months! According to Mary, though, (and this is interesting) even though these conditions occurred quite some time ago, their effect can be progressive; essentially, they could still be snowballing. They would have expected these issues to crop up earlier, but, then again, we haven't had a good hearing evaluation since that one in February. So we'll wait and see what the test says. Mary was able to move the test up 3 weeks, so that's less time to worry! We'll go two weeks from tomorrow at the crack of dawn. I take that back - we'll have to leave before dawn to get there by 6:30. Wow! I will, of course, let you know what we find out!

I the meantime, here's a picture of our cutie in her adorable coat that is even more adorable without her helmet...maybe those long ears are better to hear us with!