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.

Baby's first piercing (ear drum piercing, that is)

Surgery went well. We're pretty tired, and Maya is a little off (and a little puffy) from the anesthesia. We ended up spending a while in the hospital, because, just like with the adenoid surgery, Maya refused to drink in recovery. And since they won't remove the IV until she's drinking, we were stuck. We watched other people come and go, and after 4 hours in the recovery room they finally told us just to leave (with permission from her ENT). Ironically, about 10 minutes into the car ride home Maya started signing "water, water" and then drank :)

We spent most of those 4 hours passing her back and forth while she rested and slept on us. Then she would perk up and cry, then flop back to sleep. It's funny to look back on pictures from the adenoid surgery---she's a much bigger girl now, but a lot of the faces that she made today were the same!

First thing this morning: Dave & I are exhausted, Maya thinks we woke her up early to party.

We arrive in the hospital playroom, Maya realizes where she is and tries to bolt for the door:

How big is Maya? Soooooo big!


Driving around the hospital hallway:


All scrubbed up:

Dad's in scrubs, too!
Signing times pre-surgery:

Immediately post-op:

Leaving the surgery floor:



A nurse offered to take a family picture :) Maya's thinking "Really? You've got to be kidding me with this camera"


Sleeping:


Awake, but so groggy:

Andddddd . . . back to sleep:
I. Don't. Want. This. Stupid. WATER!

Hopefully now the tubes will do their job----less ear infections, more hearing clarity, and (fingers crossed) more speech sounds.

Can you hear me now?

Maya's ear tube surgery will be tomorrow at 8:50am. We will check-in at NY Eye & Ear Hospital at 7:20am. The procedure should be simple enough . . . the 2 stressful parts are keeping her happy despite not being able to eat prior to the surgery, and then the recovery from the anesthesia. It threw her for a loop last time.

Keep us in your thoughts, and I will update tomorrow, even if it's brief.

Surgery

It's been 3 days since Maya's adenoid surgery and she is recovering well. She has periods of whiny-ness, sometimes is eating a bit less than usual, is super congested, and is not 100% herself. But she's recovering from surgery and teething (no teeth yet, but the front bottom two are so close!), so we're just waiting and giving the occasional Tylenol.

The doctor said that the adenoids were at least as big as when he last saw them (he thinks that they were slightly bigger) and that the surgery went smoothly. She was VERY tired afterwards and wouldn't eat until after 1pm (surgery was done at about 8:10am) so we had to spend a good part of the day in the hospital. We watched her sleep and tried once an hour or so to wake her up and feed her. We shared the large room with a few other kids who were also coming out of similar surgeries (Maya was the youngest by a few years). Here is a glimpse into what the day looked like:

Our bracelets, and Maya's anklet

Daddy & Maya in the pediatric play/waiting room (notice the pout . . .she was getting hungry and we were trying to distract her)

Pom-poms are a good distraction

I LOVE pom-poms!

Hmm, these pjs may be a bit too big

Dressed up before the surgery

Maya & Mommy (in scrubs) heading down to the operating room

Immediately after surgery

Getting wheeled upstairs to Maya's crib

Resting

Clearly, still drugged up

This is how I feel, Dad

No, no food! I mean it!

Seriously, back off guys. I'm beat.

Starting to play

Hi everybody!

Cutting off the IV board & tape . . . FREEDOM!

I should start with something positive . . . we had a fantastic break. We swam, went to the zoo, went to parks, played, etc. Lots of family fun time. All of the doctors were on vacation, which ended up forcing us to have a week without doctors . . . it was annoying not to get anything done while we were off from work, but ended up being lovely. It often strikes me as very sad that we are spending so much of Maya's babyhood driving to every doctor under the sun.

That said, today the doctors were back and so were we. Dave took the day off from work (thanks to the other KIPP teachers who make this possible!) to come with us to the ENT and the neurologist.


1. The ENT checked out Maya and saw that her adenoids were still enlarged. We're going to go ahead with surgery next Thursday, April 30th (her 11 month birthday!) to remove them. It's really hard to decide whether someone else (who can't speak) should have an operation. But we have hopes that she will be able to breathe easier, and that she may progress faster towards eating with the extra breathing space. Currently, her adenoids are obstructing about 70% of the speace that she breathes through, which is a lot. That said, it will obviously be sad and scary to send her into surgery :(

This is what they should look like, if they weren't swollen:



2. Neurologist: The neurologist and his partner were really, really nice. That said, it was stupid to go see them. I had made this appointment by accident (I was supposed to find a developmental pediatrician, not a pediatric neurologist) a few months ago, and decided to keep it because . . . why not? Maybe they would just clear her neurologically and that would be one less thing to worry about? Turns out not so much.

If you went to a proctologist and complained that every time you ate, your stomach hurt, you'd expect them to go in (yikes!) for a look, no? Because looking up people's rear end is what they do. Well, if you take a baby to a neurologist because she doesn't eat and has developmental delays, they want to take a look at her brain. Because looking at brains is what they do. But hearing 2 medical folks suggest a brain MRI (which requires 45 minutes of sedation) after you've just barely wrapped your head around 30 minutes of sedation and surgery next week . . . well, it's not a fun afternoon.

We decided not to do it----there's really no reason to at this time. If some other doctor had suggested seeing a neurologist, we'd follow through, but since I just brought us in there, no. If her therapies don't help, and her 1 year follow-up genetic testing doesn't show anything, and we're still at a stand-still in a few months, maybe then we'll go for tests. But now it seems excessive. And we're so tired of tests and evaluations.

Any specialist that you go to will want to run their specialty's barrage of tests. I was an idiot for not seeing that one coming.

And Maya? Happy as a clam. Giggled like a loon when the neurologist tickled her :)

The highlight of the day ----getting asked our #1 favorite question. The geneticist asked us a while back, and the neurologist asked us again today, as part of their standard questions to Dave and I : "Do you guys have any health problems? Any family history of genetic issues? . . . and, Are you two related?" Fantastic.