8 month old Photo Shoot

Thanks for being a great photographer Grandpa!

Photo Album - 7 months old

Super smiley girl!
Playing peak-a-boo with her favorite blanket made by Aunt Chelsea.
Cicily's first time swimming!
Hawaii ohana! Grandma Sue and Grandpa Norm went to Hawaii and brought these super cute dresses back for the girls. Mom loves this pic!
Fun times and huge smiles with Daddy.

Sitting without any help!!! We're so proud of Cis, she's worked hard the past few weeks for this moment.

X-ray

These x-rays were taken in December of Cicily's 2nd case of pneumonia. Don't ask me how to see the pneumonia, I have no clue. I just thought the fact that you can see her trach in the x-ray was really cool.

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.

The Gastrostomy Button (G-tube)

I thought I'd start describing Cicily's health gear with her g-tube. Because Cicily has a very wide cleft palate and an underdeveloped lower jaw, she can't eat well by mouth. In addition, as you can see by the picture of me before she was born, she hasn't had a history of swallowing well (thus the 3 gallons of amniotic fluid she swam in). So when she was 2 weeks old she had a surgery done to place a g-tube so she could eat via a feeding tube into her stomach. She actually used to eat @10mLs of milk/day by mouth, but since she's had pneumonia twice and been sick on and off all winter we don't offer her any more food by mouth so she doesn't have a chance to aspirate it into her lungs. Instead we've been giving her an empty bottle so she associates having something in her mouth with her tummy getting full. She actually loves her bottle- it's the only thing she likes to have in her mouth and she'll hold it and shove it in! Hopefully in the next couple months we can work with her on starting solid food by mouth and we'll see how well she can swallow.

The Button:

The part on the left side of the pic is the "balloon" which is deflated to begin with, then inserted into the stoma (hole) in her stomach and filled with 5 mLs of water to hold it in place. The part on the left side is the "button" which always sits on her stomach and opens up for us to connect the "mickey adapter" when she needs to eat.

How the button looks on her tummy- I always describe it as the blow up thing on a beach ball :)

Button with mickey connected - eating in progress! One convenient thing is Cis can eat while she's sleeping.

Kangaroo pump- breast milk goes from the bag on top through the tube into Cis' tummy

Happy Healthy Girl

I decided it would be nice to have a little website for Cicily. Since she catches illnesses so easily(via the trach) I think some of her doctors see her more than her extended family and friends do! So I thought this could be a way of letting everyone get to know our wonderful girl and keep up on the fun (and not as fun) things happening in her life.