How to keep hearing aids on a baby... say what?

how to keep hearing aids on infant, baby, and toddler.
From the time we first learned Chloe may have a hearing loss to when she was finally fitted with aids was about 12 weeks. I don't remember the day we knew she failed the new born screen... I know it was in December after Christmas. (because I bought her all these musical toys and then went OH well that was pointless) - It wasn't pointless, but that was my thought-

I do remember she got her first pair of hearing aids the last day of March 2011. We had the ABR in February and had to wait a few weeks to get earmolds etc. etc.

When we went into UNC audiology for the fitting, I was overwhelmed.  They showed me how to put them on.. and I remember thinking there is NO WAY I can put these on a willing recipient and you want me to put them on my infant? Are you crazy?  I have to twist them which way? How do I tell which side goes where? I have to change these tiny batteries? Will these hurt my baby? will they be too loud? Can she hear me now? How do we tell?

I had SO many questions and yet I feel like I just stood there and listened. I don't think I asked many questions, I was very overwhelmed. I remember the audiologist showing me how to put them on, and then telling me to do it... and my hands just shook.  You would of thought I was doing surgery I was so nervous.  I really thought I could hurt her.... I didn't want to make this hurt... would it be easier to just sign with her?

Then came the "safety" talk on the hearing aids. Don't let her ingest them... they have batteries... like real corrosive batteries that are TINY and very easily swallowed.  Not a choking hazard (well kinda) but swallowed into the body. and it's happened before? a lot? AHHHH Can she die? Take her to the ER? what!!   Are these hearing aids really worth it, can't we just wait until she's older? Why now as a baby!! She was only 5 months old! (well 4 months and 30 days)

Then our audiologist said, now you need to keep these on all waking hours... she will pull them off. hahahaha.... pull them off was an understatement.

I swear I spent more time putting them on her and taking them out of her mouth then she actually wore them. But it did and DOES get easier...

Chloe the day after we got her hearing aids.

I can now put them on her with one hand while she is wiggling and trying to run down the hallway. I don't even need to be on the same side as the ear or look. Get this... I can put them on easier then the audiologist can put them on her.... I remember watching her show me how to put them on and I thought I'll never be able to do that half as well or quick... this is her profession.  Well... parents put them on more then an audiologist hehe!

safe N sound... similar to what we had.

Anyways... How do you keep these dangerous battery containing EXPENSIVE thousands of dollars worth of electronics on my 5 month old.  Really? any ideas? they gave me this string with a clip and some rubber pieces. Great idea... but they failed quick. The rubber piece was pulled off so fast by Chloe.

For the first 3 or 4 months I think Chloe wore her aids about 2 hours a day total... I'm not kidding.  For a little while I was adjusting to the idea that she couldn't hear and emotional stuff... and I just plain got so so tired of putting these aids in 5 or 10 times in an hour. NO JOKE! So I gave up some.  Then as I processed everything I realized I HAVE TO JUST GET THIS DONE! It was hard, and It sucked, but she NEEDED TO HEAR so she can learn, so she can talk, so she can hear me sing to her, so she can hear me tell her I love her.

Then I found this: Those crochet headbands... and it def helped a TON!!!! But then she learned to pull that off.

another with the headband

Headband - see the aid sticking out the side

Chloe without anything but the aids... they didn't last long like this.

The next thing I found was the Hearing Halo (link at the end of this blog)

Hearing Halo

 

Chloe with the Hearing Halo

This saved us... best invention ever!!!!! And they are cute. She looked like a little amish baby! hehe   It is a thin enough material that it does NOT produce feedback. and it velcros underneath and is less distracting than strings to Chloe.

Hanna Andersson Pilot Caps

The other thing I never tried but was recommended was Hanna Anderson Pilot Caps (photo below and link) I have heard many people loving these... I did not think Chloe would leave the stings but I know many families that these have worked wonders.

Then as Chloe started leaving her aids alone and realized she liked them, she pulled them out less. But then she would randomly pull them off or lose them at a park, or store, or somewhere impossible to find.

Chloe with Ear Gear

  Or the fun stage of throwing everything away... including her aids. THAT was fun.  My wonderful husband has dug through some nasty trash in search of hearing aids.  We did lose one aid to the trash compactor. :( YUK  Oh usually/ not always/ you get ONE replacement. We are on that replacement and pray that we don't lose them again.  So then I invested in Ear Gear (pictured above). These things are great, and BRIGHT so you can find them. and they come with a clip so they usually just stay on the child. (usually.... as in she can pull them off still and throw them)

She is much much better then she used to be.. but we still pull them out if she is tired or overwhelmed.  Or my favorite is when I tell her no... then she pulls them and throws them and pretends she didn't hear me. OH the attitude of a toddler. LOL  

Now, mostly in the car, we chew on them.  She will chew and chew and chew on everything.  We lost a FM receiver (tiny) and I sometimes wonder if she ate it.  But that is for another day. I have not figure out how to prevent the chewing/eating of the hearing aids, the molds, the tubes, the FM, etc.  

But now we wear them 90% of waking hours.

 (she pulls them out when she's ready for bed and at bath)

I hope these links help a parent that is looking for a way to keep aids on their infant.

anchor your ears... pilot caps that look great!

http://www.etsy.com/shop/thehearinghalo?ref=top_trail  (Hearing Halo - I have purchased these and they are great)
http://www.etsy.com/shop/anchoryourhearing (no experience but these look great!!!!)
http://www.hannaandersson.com/search.aspx?search_for=pilot%27s%20caps&fsb=y (hanna andersson pilot cap)
http://www.gearforears.com/  (Ear Gear- great!!!!)
http://www.otocool.com/ (so fun for kids)
http://hayleighscherishedcharms.com/  (earrings and other decoratives for hearing aids/implants) SO cool and they are made by an amazing kiddo!)