Do you hear what I hear?*

Well, apparently not. 

(sigh)

But let me start at the beginning.

We woke up bright and early to get everything in order and arrive at the hospital just before 6.  Maya occasionally was signing for food, water, and milk, but mostly entertained by my wallet, initially:

Daddy, is it just me or is this room very familiar?

And she had fun riding around in the car, too.

clapping her hands in the car

When it was time to change into the surgery pj's, we had a realization:

Mommy, these things actually fit!  I must have gotten a lot bigger! 

For comparison's sake:

These are way too big!  April, 2009 (11 mos old)

Getting closer, but still baggy . . .  March, 2010 (1 yr, 10 mos old)

Hey! These fit! I'm a big girl!  Today, 3 yrs old.

After the pj's were on, she was off and running (what a change from our previous hospital trips!).  We spent a lot of time following her around . . .

 . . . and then she tried to make a break for it .  .  .

It was my turn to take her in to the OR (we've alternated) and man, this time was tough.  She fought and fought against the mask on her face, lasting a good, solid, painful 15 seconds before giving in to sleep.  While holding her down and whispering in her ear, the mask must have slipped a little and I got a mouthful of the gas----which tastes totally disgusting (poor kid)---and a nurse saw me pull back and grimace and rushed over with a chair.  It made me wonder how many parents have accidentally gotten too much gas and got dizzy (I was fine and didn't need to sit). 

The procedure took a full two hours, and our ENT called up to the waiting room halfway through to update us that she was doing well and things were progressing nicely. (I can't say enough good things about our ENT--Jay Dolitsky--seriously---if you're in the NYC area and need a pediatric ENT, he's the guy for you)  He checked her ears and cleaned out a clogged tube, then the audiologist (Jessica) did the ABR.   As soon as she was done, Jessica came upstairs to meet with us . . . and when we went down to recovery we met again with the ENT.

(Summary of the findings and next steps at the bottom of this post)

When Maya woke up, she wanted cuddles from Daddy, and to rip out her IV. 

A word with Dr. Dolitsky was all it took to get the IV removed right away (historically, it's taken 3-4 hours before she's drank enough to convince them to remove it) . . . and as soon as it was out, she relaxed a little and drank away.

In recovery I was just too busy to take pictures, so that's all we've got.

So here's the summary:  She has "mild hearing loss" in both ears.  Both ears.  I was kind of shocked----if anything, I was thinking that we would see left ear trouble, but not both.  Jessica said "The test took a long time" so I'm guessing that they might have seen some weird data, but I won't know more until we meet with her again (sometime soon).  Dolitsky & Jessica agree that hearing aids are the most logical next step, although we don't know how long they might last for----we may feel like they're making a difference and keep them, we may not see any change and not keep them for too long.   They have seen older children with the same degree of hearing loss who have benefited from hearing aids, and others who have functioned fine without them.

In the past week, I've repeatedly questioned going through with this test, and whether it was a necessary procedure.  I can say to Maya "What sound does a "B" make?" and she'll chirp "Ba!" from the other room.  I had been thinking: If she can hear the difference between me saying "B" instead of "D" or "P" from the other room, her hearing must be fine.  But apparently not.

...sigh...

I'm sure with a little time I'll have embraced the hearing aids.  Truth be told, there's a part of me hoping for a miracle moment---the hearing aids go in, Maya looks around in amazement and says "Mama!  Wow, what a difference!"  (well, maybe not quite) It will be incredible if these help to make a difference in her speech, and if they help to change the quality of her hearing.

But I'm also a little sad. 

And the pity-partying part of me thinks: "She already has enough chips stacked against her.  I hate that she'll have devices in her ears and devices on her feet . . . from head to toe she needs technology to function 'normally'."

And the part of me with more perspective says "Oh, shut up, Dana.  She has splints . . . and they help her walk better.   She'll get hearing aids . . . and they'll help her hear better.  What in the world are you whining about?  Oh, and ps---it's not like anything has changed.  She couldn't hear perfectly yesterday, she can't hear perfectly today---and at least now you can help the poor kid out."

Yeah, I know.

(By the way, don't even get me started on the fact that I'm pretty sure the ABR done when she was 3 months old wasn't done properly, and we should have known about this right from the start.)

So, hearing aids.  They're coming down the pipe.  I have literally no idea what to expect (I keep picturing her with double bluetooths, but I don't think that quite right). 

Oh, and today's discharge orders were very specific:

Obviously alcohol and sexual activity are not applicable.  Good to know that reading, watching tv, and washing her hair are all acceptable activities . . . as is driving?  Driving?  And it looks like the jury's still out on nose blowing.  So driving is in, but nose blowing is questionable.  Good to know.

3 ducklings, 2 pigeon chicks, and 1 unsuspecting little girl

3

Maya's special instructor, Virginia, brought over some ducklings today!  (She's a teacher by day, special instructor by night, and the eggs were hatched in her classroom.)  Maya and I were equally excited:

(gasp) Are those . . .

Mommy, ducks!!!!

They are only 5 days old and super cute.  We let them waddle around, drink and splash, eat some food.  When I walked and did a birdy whistle they followed me like I was their mama duck!  Maya was enthralled.  Check out my future ornithologist:

Hmmm.  You duckies are verrry interesting.

Then one of the ducklings started pecking at her foot, which was hilarious:



And did you notice that right at the end of that video the striped duck was checking out Maggie (one of the Little People.  Yes, we know their names.)?  Well, Maya thought it was ridiculous that the ducks wanted to play with Maggie:

Virginia!  That duck's kissing Maggie?!

Oh, Mommy, this is just too much fun.

2

The second egg hatched this morning, and MP is now the proud mama to 2 very ugly baby pigeons :)

1

Miss Maya went to sleep tonight blissfully unaware that tomorrow morning we're heading to the hospital for her ABR.  She's scheduled to start at 7:30, and we need to arrive at the hospital by 6, so it's going to be an early morning.

I can't help but feel like I'm betraying her when we head in for this kind of stuff.  She has no idea what's going on, or why she can't eat or drink anything, and then is scared, and then feels miserable.  I feel like I should have started my apologies tonight . . .

I'm sorry for misleading you into thinking this is just a normal night, little girl.  Truth be told, early tomorrow we're going to whisk you out of here with no food or water and pass you over to a team in the hospital.

 . . . and continue them straight through tomorrow afternoon . . .

I'm sorry that you're groggy and cranky and don't understand why.
I'm sorry that we have to keep waking you up to get you to drink when you just want to sleep it off.
I'm sorry because we chose this for you and you didn't even get a vote.

 . . . ending with the grand finale of either . . .

I'm so sorry that we put you through this whole stupid test only to find out that your hearing was perfectly fine all along. 

 . . . or . . .

I'm so sorry that it took so long for us to figure out that you couldn't hear perfectly. 

(sigh)

I will try to update the Facebook page when she is out and ok, but I'm not sure if I'll be able to do it from my phone.  Thanks for the good thoughts and prayers.  Although she's been sedated (3) other times, this is by far the longest procedure, and I can't help but be anxious (and apologetic).

Lose-Lose (Subtitle: Maya's mysterious ears)

A month before Maya turned one, she had her adenoids removed.  (She was so innocent and little!)

Two months before she turned two, she had ear tubes put in.  (She was semi-innocent and semi-little.)

And soon she'll be 3 (May 30th---it's coming so soon!).  I was really excited when I realized that this would be the first year that she wouldn't be sedated for any procedures . . . except now she will be.  Not until after her birthday (we don't have a date yet, but it's looking like July-ish) . . . but this will be a big one, somewhere between 1.5-2 hours of sedation. 

:(

She'll be having an ABR (hearing test) done.  She actually already had one done . . . back when she was itty bitty (12 weeks).   Here is her full, confusing, unclear hearing story:



At birth, Maya failed the newborn screening in both ears. She had some fluid issues during delivery, so we thought he ears might just be gunky. Before we were discharged they re-screened her and she failed in the left ear, passed in the right.
Two weeks later, we went to the hospital to get rescreened. Again, she passed in the right ear and failed in the left. Her eardrums reacted normally in both (this means that fluid in the ear didn't cause the failure in the left ear). At this point, we weren't concerned---she reacted to sounds, turned to look towards the source of a noise, etc.  We thought the tests were silly---she had tiny little ear canals, and the little buds kept slipping out, so it seemed like she would obviously fail.

My ear canals are too tiny for your silly tests.

At 12 weeks, she had the ABR. In this test, the child has to remain asleep and perfectly still----little earbuds send noise into the ear canal, and electrodes are attached to the head to measure whether the brain reacts to the noise.

12 weeks, during the initial ABR.  Yes, we take pictures during everything. 

Several times, the audiologists came in from the monitoring room to check the leads, which Dave and I saw slipping out periodically. When they told us that she seemed to be failing, we asked them to double check the buds and connections again . . .  and then she passed. They were very suprised and said that they don't typically see infants who keep failing on one ear, but then have a normal ABR. 

Hooray!!!!! 

(Well, kind of)

Fast forward 2.5 years and she has never passed an in-office hearing test at the ENT (OAEs).  Ever.  Sometimes one ear passes, but she's never passed a single one in both ears. It's a mystery. Because of that, our ENT (who is amazing) regularly sends us down to NY Eye & Ear Hospital to have "behavioral testing with 2 audiologists".  This test relies on the Maya's behavior to let the audiologists know what she hears---she has to look in certain directions, at toys that light up, etc.  The problem is, at some point, she's had enough, melts down, and the test end abruptly.  We've gone for testing 4 times now, and for the first three the results were always like this:

Audiologist:   "Ehhhh . . . the data that we were able to get looks mostly normal, but we weren't able to get everything that we really need to.  What do you think about her hearing?"

Me:  "I think she hears.  She understands when I talk to her, she identifies things in books and follows directions.  I don't know if her hearing is perfect, but I know it's functional."

Audiologist:  "Ok, that makes sense.  Come back in 4-6 months and we'll see if we can try again and learn more."

Unfortunately, when I took her a few weeks ago, she was a mess. Scared, panicked, screaming screaming hysteria that was constant and so loud that the noises she was making were louder than the volume of the tones they needed to test her on, so they couldn't get much data. They couldn't get any data at all on the left ear (which is the one that I'm concerned about).

So we were left with a choice:  Do the same as always, and try again in a few months, or repeat the ABR.  The problem is this:  an infant will sleep soundly through an ABR .  . .  3 year old Maya will not.  So she'll need to be sedated for the entirety of the test (1.5-2 hrs).  And that sucks, which is why we haven't done it within the past 2 years.  We've thought "She certainly hears well enough!  Does it really matter if she has minor loss in one ear?"

But now some things are different . . . a very smart audiologist friend of mine (thanks, Amy!) pointed out that while she may hear me seemingly perfectly in our quiet apartment, she'll be in a noisy school come September.  Some minor hearing loss can be easily addressed with simple devices in the classroom . . . so now would be a good time to really know, once and for all, what her hearing situation is.  Yesterday I met with the ENT, and he agrees.  It will likely be scheduled for sometime in July.

The worst part about this test is that it feels really lose-lose.  Either:

a) Her hearing turns out normal.  I feel terrible for putting her through sedation a fourth time, which is miserable for her.  I'm sad that we've wasted so much time on appointments for hearing that turned out to be totally normal in the end.  Lose.

-or-

b) Her hearing turns out not normal.  I feel terrible for missing the oh-so-very-clear signs that were literally present from day 1 (failed screenings, failed tests, not speaking at all, etc).  Hindsight will make a million things seem like a neon flashing sign "Mom!  I can't hear you!  Help me!  This is really easy to fix!"  Lose.

Lose-Lose.

At least we'll have clear answer, though.  The time has come to figure it out for sure.