Wednesday, April 25, 2007

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

Monday, April 23, 2007

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.

Photo Album - 6 months old

Twin shirts

Sitting up all by herself (with a little support from the pillow!)

How Cis sleeps - in Mom & Dad's room in this cradle, oh yeah and with her 6 machines next to her. (See "my equipment" portion of this site for more info on those.)

Easter Day

I performed a tracheostomy on this Cabbage Patch doll and we gave it to her for Easter. The first thing she did was pull it's trach's humidvent off just like she does to her own!

Easter Bunny sisters

Photo Album - 5 months old

My favorite picture so far! It Captures her cute smile so well I think. When she's healthy and feeling good, she is a super great smiler and I LOVE it!!
Also sporting her new fabulous BAHA hearing aid.
Sleeping in her big crib. A good profile shot- you can see her trach, ear, and lower jaw quite well.

Photo Album - 4 months old

Smiley Sisters!
Maya loved sending this balloon over Cicily's head. Cicily absolutely loves playing with Maya!

Beautiful sleeper girl

Photo Album - 3 months old

Cicily smiling in her bath with Maya. She loves the bathtub when Maya's playing with her, if Maya's not in the bath, Cis doesn't care for it much!

Mom and Cis snuggles - it snowed at our house! (look behind us on the ground)


Daddy and Cis snuggles

Photo Album - 2 months old

Christmas Morning -Cicily's holding her new doll from Santa Clause
Double Snell Family on Christmas Day

Cute outfit and her old Starkey brand bone conduction hearing aids. The "yucky old clunkers" as we call them!