We've finally gotten a little peace, not having to listen to feedback all day. Our audiologist thinks the molds are probably not a good fit, even though the impressions were just made a month ago and the same impressions were triple dipped just last week. So we're heading back to Children's tomorrow for the third time this month for new impressions. Our audi told us that we can leave the hearing aids out if the feedback is making us crazy. Since Lily doesn't seem to be responding to sound with the hearing aids, we're really just putting them on her to stimulate her auditory nerves. Our audi said we can stimulate the nerves by using the hearing aids just a few hours a day. I'm putting them on her more than that, but just a little. I don't feel so bad now. As soon as we can get some good fitting ear molds, we'll be back to wearing the hearing aids 10 hours a day. Thanks to all those who responded!
I think the feedback from the hearing aids has officially beaten me. I hate to admit this, but the feedback is so loud and annoying that I find myself putting the aids in later in the mornings and taking them out earlier in the evenings. When we go to church I don't even take the hearing aids. Then I worry that her auditory nerves aren't being stimulated enough. My emotional state has been pretty good lately, but this week I'm back to feeling sorry for myself. I hate that my baby has to wear hearing aids, I hate the loud feedback, and I hate that the hearing aids aren't even really helping much. Even after completely maxing out the volume on her high powered digital hearing aids, she still doesn't respond to ANY environmental sounds!
To all you experienced D/HOH mommies: Any suggestions on dealing with the feedback? We've tried the Otoferm and we've tried double dipping and triple dipping the ear molds. I read about using Comply Soft Wraps at the end of the sound tubing INSTEAD of ear molds. Anyone tried this option?
Lily had her second hearing aid check in the sound booth today. There was no gain in the decibels she can hear. She responded at 80 dB like last time. Her audiologist turned her aids up as loud as they will go. No responses to environmental sounds tonight, just REALLY LOUD feedback. *sigh*
I blogged before about Lily's ear smelling stinky after I take the hearing aids out. Thank you to those who responded. I took her to the doctor to make sure she didn't have a fungus infection in her ear. The doctor said her ears look good, no infection. We also got to see the audiologist that day to make some new ear mold impressions. I discussed the stinky ear with her and we came to the conclusion that her ears do have a little smell because sweat is trapped in there all day, but that I also probably have a sensitive nose. I guess her ears smell "normal" for babies who wear hearing aids. She suggested I take them out at nap time to give her ears some more time to air out. I was only taking the hearing aids out for bath time and bed time, not nap time. The smell isn't as bad since I've been taking the aids out at nap time, but there is still a faint smell. I guess it's just something we have to get used to.
We finally got a call back from Lily's ENT (ear, nose, and throat doctor) informing us that her daddy and I are both carriers of a recessive Connexin 26 gene mutation. This means that we have a 25% chance of having deaf children. Her daddy and I each passed Lily a flawed copy of the Connexin 26 gene (CX26), which is why she is deaf.
1. Lily receives an unflawed copy of CX26 from her daddy and an unflawed copy from me--Result: hearing.
2. Lily receives an unflawed copy of CX26 from her daddy and a mutated (flawed) copy from me--Result: hearing.
3. Lily receives a mutated copy of CX26 from her daddy and an unflawed copy from me--Result: hearing.
4. Lily receives a mutated copy of CX26 from her daddy and a mutated copy from me--Result: deaf or hard of hearing.
This is true for any children we will have in the future as well.
It is nice to finally know WHY she is deaf. It is comforting to know that it was nothing that I did wrong while I was carrying her. When we first found out she was deaf I wondered what I did wrong. I tried to be so careful and do everything right. It also makes me a little sad though to think that she has NEVER heard anything, not even in the womb. She's never heard her mommy's voice. I'm so looking forward to the day when she will be able to hear our voices.
Lily was born with profound bilateral sensorineural hearing loss (deaf in both ears) to two hearing parents. She is now learning to listen and hear with the miraculous technology of cochlear implants. This blog was created to update our family and friends on her journey to the hearing world.