Thursday, July 26, 2007

Photo Album - 8 months

Cicily always wakes up so happy from her naps, kicks her legs and grabs her toes! When Maya sees she's awake, she always says in this really high voice, "Cicily you're awake, hi you cutie pie!" On this Sunday afternoon, Cicily got a special welcome visit from Maya who climbed into her crib.

Just after a nice morning bath. Cis loves splashing around in the tub.

Eating her humidity collar she wears over her trach at night when she's sick. Apparently a fun toy as well as functional medical equipment!

Monday, July 9, 2007

Suction Machine - for trach

This is a great video of Cicily's big sister Maya (3 yrs. old) suctioning her Cabbage Patch's trach. She got this doll for her birthday and was showing it to her cousin, Alexandria, complete with the suctioning demonstration. A fairly decent respiratory therapist already!

This is the suction machine- our friend that gets packed along anywhere Cicily goes. Thank goodness for portable suction machines!! Trachs create extra "secretions" in the throat (trachea/airway) and if you have a trach, you can't just cough up those nice little secretions and spit them out or swallow them as most people do. Thus, the invention of the suction machine. We use it with a suction catheter to suction deep into the trach (when I learned how to do this at first in the hospital I felt like I was playing the game "Operation", then I found out if you touched the sides nothing would buzz and Cicily would still live - phew!) Or we use the tip you can sorta see in the picture (if you can't see, feel free to ask for a demonstration anytime!) to suction the secretions Cicily has already coughed up that are sitting at the edge of the trach.

Thursday, July 5, 2007

Upcoming Surgery - Laryngoscopy

Cicily will be having her 3rd surgery on July 3rd. Her ENT (ear, nose, and throat dr.) will be doing a larynogoscopy/bronchoscopy to evaluate her airway. This is an outpatient procedure where he passes a scope in her mouth and down into her trachea to see how things have changed in the past 8 months. He performed this same procedure to evaluate the need for a trach right before he did her tracheostomy. We have interesting pictures that he took with the scope showing her tongue sitting right on top of her trachea. We're hoping this time when he looks her tongue won't be blocking her airway as much!

Surgery Findings
Cicily had her sugery on Tuesday. She went in quite happy, but came out kicking and screaming!! I forgot how mad she can get when she's upset- she's such a determined fighter, so much so that she got dehydrated from all the commotion! The surgery was very quick and her surgeon, Dr. Mancuso, said her airway has improved 60% from when she was 1 week old. So this is incredibly good news! She'll still have her trach for a while, but only time and patience will tell how long. Thanks ever so much to everyone who has prayed for Cicily.

Tuesday, July 3, 2007

A note from Mom

Since Cicily was born, I've given updates and talked to people about her and sometimes I get the question, "And how are you doing?" My initial thought most times is, I have an amazing, healthy baby, I'm doing great. (The three months when she was extremely ill may be another thing entirely, as we were a happy family, but those days were rough.) In all the typical "baby" things, Cicily is the easiest baby you could ever imagine. When she gets tired, we lay her in her bed and she falls asleep, she sleeps like a champ, and when she wakes up she's happy playing in her crib until we come to pick her up. She honestly only ever fusses if she's in pain or tired. When she's awake, she gives me the biggest smiles and has even grabbed my face with both hands and pulled it in close to her face for a big smooch! She's just wonderful. And I am doing great. - I am a happy Mom of two brilliant girls.

Shortly after Cis was born, a good friend of mine asked me, "what's been the hardest thing for you?" I've thought about that question. Immediately and obviously I think about my baby having to struggle with pain and wanting to go through it all for her, the only consolation knowing that One already has and knows the purpose in all things. Then there's a seemingly trivial, less obvious answer that has broken my heart since she was a couple days old.

As she was born, Cicily was immediately intubated and I heard her give a loud cry. I was so relieved and recalled a dear uncle of mine express a similar feeling of wanting to hear his baby cry to let him know that everything would be ok. On a day to day basis, however, I do not get to hear Cicily's voice when she cries. I remember laying in my hospital room in the post-partum wing after she had her tracheostomy and hearing a couple babies crying fiercely. I cried myself, having only heard that sweet sound from my baby one meaningful time. I wanted to go around knocking on doors like a crazy lady, telling people to LOVE THAT CRY! I would go to church and see a mom hushing her baby during class and I would want to irrationaly yell out, LET HIM TALK!

A few months ago, I read one of those "inspirational stories" that I don't usually love about moms of children with special needs, but one part really got me. "She will never take for granted a spoken word. . . When her child says mommy for the first time, she will be witness to a miracle and know it."

I remember Maya laughing out loud for the first time and thinking that it was certainly the greatest sound I'd ever heard. I never thought I took for granted a spoken word or sound of hers. Now I know I never can.

I never thought I took for granted the simple fact that I could even have a baby, perfect ears, or that my oldest daughter could hear a cat purr. But, thanks to Cicily, now I know that I will always be grateful that my baby has chubby cheeks, that she can sit up, that she smiles at me, and that she will one day be grateful for these same things and more in her own baby.

I've never heard Cicily's voice laugh out loud, and it breaks my heart, but I know someday in the relatively near future I will. May I never hear that sound and not be reminded of how fortunate I am to be witnessing such a miracle.