the drama that is hearing aids

so, now that little m's cochlear implant surgery has been denied, it was time for us to head back to the audiologist the other day to check m's hearing aids and have them adjusted a bit to give her more sound. the testing itself was no fun at all: little m had gone to an appointment already that morning and as a result had missed her nap, so she was already a bit on the cranky side. first, the audiologist put her in a soundproof booth and tested her responses to sound without the hearing aids on, which meant we had to remove the aids. (which entails pulling the aids off of the delicate behind the ear skin, because we have to lightly tape them on with wig tape to get them to stay. as you can imagine, an already fussy, tired baby loves this.) 

it is always discouraging to watch her evaluations, and the fact that she responds in absolutely no way at all to sound. we know she is profoundly deaf, but it is a very visual and clinical reminder. after the no hearing aid portion of the evaluation, it was time to see how she responded to sound with the aids on. so our audiologist reset them to give little m about 40 more decibels than she had been getting before. we popped in new batteries and went for round two. at this point she really was going into meltdown mode, and it just made me sad. i thought about how different these first 7 months of her life would be if she didn't have hearing loss: she most likely would only have gone to the doctor for immunization appointments and regular checkups. it always kills me that i have to drag her to these appointments so that she is poked, prodded, and evaluated. no wonder she gets irritated! i know we are doing the best we can, and she is a really happy baby, even going to so many appointments. (for those of you that know me well, you know i am not a fan of making phone calls and going to the doctor, so the irony is not lost on me that my life now consists of umpteen appointments!)

i think i am just having a tough week with everything feeling compounded and freshly raw, like new waves of sadness. what it comes down to, as i've mentioned before, is that this all feels like a perfect storm: little m being deaf and all the work, energy, advocacy feels minimal compared to the emotional devastation that is happening in my family.

this all brings me to yesterday and my fight with the new hearing aids. 

this is how it goes....first, i am armed with my roll of wig tape, which helps the aids stay put.

my teeny scissors clip the tape, and the otoferm (thanks mary claire for that tip) is a silicone cream which we wipe on the ear mold to get a seal so that they stick in there and don't feedback all day.

here is a hearing aid ready to go. at this point we've checked batteries, checked the sound in the stethoscope, and affixed the tape and the cream. little m is on the changing table, squirming, and so we (hopefully) deftly hold up her hair around her ear, get the ear mold in and push it around until there is no feedback, make sure the back of the hearing aid is in the right position behind her ear and then (because by now she's screaming and all over the place) quickly do the same thing on side two before swooping her up and planting lots of kisses on her.

here is her hearing aid in the way it is supposed to be.

here is little m halfway through the process yesterday. when her surgery was slated for halloween, the surgeon had us remove her hearing aids for a week prior, so she kind of got used to them being off. now that they are back on, she tears them off constantly! we've started putting on a little pilot's hat so she can't swipe them off. BUT brilliant and precocious girl that she is, she has now learned how to pull her hat off. um, yeah. smart little bugger.

add to that the fact that the aids, newly adjusted to emit much more sound, are good for little m, but it complicates life for matt and i because that means the feedback is also significantly louder. (every time the ear mold presses against something - like if she leans her head against the side of the carseat, or snuggles, or turns her head - or anytime the mold is out of her ear canal, the hearing aid feedbacks (which is a super high pitched, and now very loud and dare i say annoying, tone). 

so yesterday involved the above routine, over and over and over. i'd get the aids in, and the feedback would begin. she'd tear at her ears, pull on her hair by her ears, pull on her cap, grab at the aids, shake her head back and forth and scream. at one point she tore one out while i was putting the second side in. at another point she got her cap off so it was just tied around her neck but not on her head, and then she took an aid off and pulled the ear mold completely off of the behind the ear portion of the hearing aid. when they were actually in her ears they were screeching feedback, so i kept poking and pushing at her ears to get the aids in the right spot. it was a pretty tough day. 

sigh. this is a very long and rambling post to say that at the end of the day, i'd fought the hearing aids....and the hearing aids won.

we'll see how today goes.

little miracles in the world of hearing loss

little m's hearing aids are a constant battle. i'm sure you can imagine the joys of wrestling a teeny tiny hearing aid onto both the back and inside of baby ears. we have a wonderfully feisty baby (as i write this, she is screaming herself to sleep for a much needed morning nap), but that means the hearing aids do not go on without a fight. she recently discovered the power of her hands to grab them and pull, so she's now able to remove them, even though they are stuck onto the backs of her ears with wig tape. once they are actually on and she hasn't yanked them off, they feedback with a super high pitched tone every time she leans against something or moves in a way that they get jostled out of her ear canal. this happens constantly. 

i think it would be less frustrating to deal with them if we actually noticed a difference. people always ask us if we think she can hear us when they are on, and we always have to say no. at the beginning when we first got them, we'd make loud noises behind her to try and test them out and then since she did nothing in response, we stopped; too discouraging. the doctors have told us that it is highly unlikely that she is getting much sound at all from the hearing aids since her hearing loss is so profound, so there is a part of me that says, "what's the point?" at the same time, i know that there is value in putting them in, even if it is a pain and seems to do nothing. in the very least, they are hopefully stimulating that part of her brain so that it is getting some action and not atrophying. and i do hope that maybe little spots of noise are getting to her; i feel like it is selfish for me not to put them in, even as frustrating as it can be, when they may give her even a little sound. 

that brings me to this morning's little miracle. sometimes i try to put little m's hearing aids in when she is nursing, because she is happy and distracted, and won't try to move too much when i am adjusting them. as i put on her second hearing aid this morning, i sang her name to her (we try to reward her with sound as soon as we put them in so there is instant gratification and something positive for all of the poking and prodding we have to do to her). as soon as i sang, "M", she stopped, turned from nursing, and looked up at me with a smile. i couldn't help it, i was so surprised that i started crying. 

who knows, maybe it was a fluke that she turned right then. or maybe she heard my voice. i'll never know, but it was a gift to me. and hopefully, a gift to her too. 

sleep well

we had a long day around here, so off to bed. hope you all sleep well-especially my friends with new little ones. here's little m, crashed out, hearing aid and all.