Hearing Aid - The glorious BAHA

Cicily was born with microtia (small underdeveloped ears) and aural atresia (no ear canal openings). This gives her a conductive hearing loss. This means she can hear up to 60 decibels, which is similar to what you might hear if you plug your ears. Makes lots of sense since she just doesn't have ear openings- her ears are always plugged! :) To allow Cis to hear she has had hearing aids since she was 2 weeks old. Her hearing aid is a special rare type called a bone conduction hearing aid. It works by having a microphone that picks up sounds and then the aid vibrates the bones in her skull to stimulate her inner ear. She used to have a traditional B.C.A. that had wires and was a huge clunker on a tiny head. At 4 months old she got a BAHA (Bone Anchored Hearing Aid) and we LOVE it! It's digital so the sound quality is better and it's smaller. Sometime before Cicily is 6 she will have the BAHA implanted into her skull (possibly as early as 2 yrs old). They actually implant a screw into her skull and then put the BAHA device on to an abutment that sticks out of her head (I saw it on a plastic model head and yes, it does resemble Frankenstein's screws- only smaller! :) ) This will greatly improve the sound quality as the vibration of the sound will actually go strait to her skull instead of having to travel through her skin first. And she won't have to wear the headband that the BAHA sits on now. If you'd like more info, you can check out the BAHA site http://www.cochlearamericas.com/Products/2013.asp

Headband Mom rigged up so she could wear her BAHA and have a cute baby girl headband.

Headband without the BAHA. The plastic piece is the cradle that the BAHA snaps into. The backside of the cradle rests tightly on Cicily's head so it can vibrate the sounds to her skull bones.
BAHA sitting face up without headband. This is as it will look under her hair when it is implanted.
Backside of BAHA. You can see the post that snaps into the plastic cradle on the headband. When implanted, that post will snap into the abutment on Cis' head.
BAHA in Mom's hand to show the relative size .

The Trach (both our fondest ally and hated foe)

Cicily has an underdeveloped lower jaw (micrognathia). This was seen in her ultrasounds before she was even born and the reason we had a specialized pediatric ENT (ear nose and throat Dr.) in the OR when she was born. He immediately intubated her at birth and a week later did an operation to assess her airway. He performed a larongoscopy/bronchoscopy to visualize her airway and even took pictures of it for us. Because her jaw is small and set back, and our tongues are connected to our lower jaws (ah the cool things I've learned!!) , her tongue sits right on top of her trachea, inhibiting air to move in or out of her mouth, down through her trachea and into her lungs. So in the same surgery the ENT performed a tracheostomy on Cicily. The trach is a "plastic breathing tube" that goes into her trachea (wind pipe) directly underneath her vocal chords and allows her to breath!
The small side to the right of the pic is the portion that goes down through the hole in her throat and into her trachea.
This is looking straight on at the trach. The center round "ring" is the part we put the catheter into to suction out her secretions multiple times a day (much more when she's sick). The "wings" stick out on her neck.
The trach attached to the foamy trach holder that goes around Cis' neck and holds the trach in place. How we love velcro!!!
Trach with the Passy-Muir valve on. This valve allows speaking as it opens to allow air into the trach, but then closes on exhalation and forces the air up over the vocal chords and out the nose/mouth. Cicily only tolerates this when she is totally healthy and not "junky", so consequently we don't her her voice when she cries, laughs, etc. (Interesting side note- we've found hiccups still cannot be heard even with a Passy because they are an inhalation sound -I told you we've learned cool things!)
Trach as it usually looks on Cis with the Humid-vent on. This is also called an "artificial nose" as it has paper rolled up inside the plastic that moistens and warms the air that is inhaled.