Why my baby is so quiet!

This is kind of an FYI for anyone who doesn't know much about trachs or hasn't come into too much contact with anyone with a trach.  I would say that describes most people!  It definitely described me before 9 months ago.

The comment I notice most when strangers are remarking on Zadie (other than how amazingly adorable she is!) is how *good* she is because she hasn't made any noise!  I always debate about explaining to them why she's so quiet, but usually I just nod and smile and say thank you.

Zadie is a good girl and she's generally very happy and content.  She doesn't cry often, but she's a baby and she does cry sometimes.  However, because of the trach, she doesn't make any noise except for the stuffy, congested noise coming out of her trach.  It's a pretty sad sight to see your baby crying her lungs out, tears streaming down her face, with no sound.  I can only imagine how frustrating it is for her.

A tracheostomy is an artificial airway.  The hole goes directly from the neck to the trachea, below the vocal cords, so the vocal cords are completely bypassed.  Some people can move air past the tube and up through the vocal cords.  I've heard that kids start to figure out that if they block the trach with their finger, they can make noise.  There's also a special valve that can be worn to allow the trached person to make noise.  This is a Passy-Muir valve.  Zadie has one, and we tried it once, but she didn't do well with it.  She has to learn (or be able to) blow air out her mouth and nose, and she hasn't done that in over 9 months.  So that will take some getting used to, as well as growing on her part, so that there's more room around the trach tube.

Zadie gets speech therapy weekly, and we're encouraged to talk to her a lot even though she's not babbling back at us.  We are also starting to sign with her, so that she has a means of communication until she gets decannulated (gets the trach removed) or is able to tolerate the Passy-Muir on a regular basis.

Needless to say, we can not wait until we can hear our little lady babbling, talking, screaming, whatever, all of the above!

Exciting day...

Today was exciting! Zadie met her new Occupational Therapist and Speech Pathologists from Early Intervention. They all loved her (of course!) and were really impressed with where she is right now. Zadie showed off all her best moves to the OT, including her almost-crawling and pulling up to stand. She also showed off how dexterous she is.

For the speech pathologist/feeding expert, Zadie did really well with a spoon with some applesauce on it. That was the most exciting part for me. It worries me that she takes 100% of her milk by feeding tube. I don't want her to have long term feeding issues. Seeing how excited she was to get that spoon in her mouth gave me real hope that we're getting somewhere! The therapists also said that they can tell Zadie is trying to vocalize. Hopefully soon we'll be able to try the speaking valve out on her.

Next week, we have an appointment with the surgeon at St. Joseph's to talk about a plan for palate repair!