Monday, April 30, 2012

Big day tomorrow!

Zadie has a big day tomorrow.  She's having surgery to repair her cleft palate and get tubes put in her ears.  I'm very anxious about it, but I'm very excited to be heading in the right direction.  This is kind of the first step in Zadie getting past her issues.  Once the palate is repaired, we can focus on decannulation (getting rid of the trach)!  Her ENT said he would start checking her airway when she's about 18 months, so that's the next thing to look towards.  The last 11 months have flown by, so we can do another several months.

We have to be at the hospital at 6 am and her surgery is scheduled for 7:30 am.  It will take about 3 hours.
She won't be able to put anything in her mouth for TWO weeks after surgery.  How rough is that?  She puts just about everything in her mouth now, and her favorite thing to chew on is the stopper on her feeding tube extension.  She chews on that throughout her feedings.  We had to buy these arm immobilizers (aka "no-nos") that she will supposedly have to wear for the two weeks to keep her hands and anything else out of her mouth.  My friends who have been through the palate surgery with their kids say that it wasn't necessary to wear them that long, so we'll see.

Jonathan's having a sleepover at his cousins' house tonight, so he just knows that it's fun time!  He loves his Syme cousins!  Zadie is only staying overnight in the hospital, so we should be home Wednesday.

Please wish her luck and keep her in your thoughts and prayers!

Monday, April 23, 2012

Zadie's weekend away...

Zadie decided she needed another weekend away, so Friday morning, after a week of fighting what seemed to be a cold, she woke up with a fever. Off to the ER we went. She ended up being admitted, although I don't think it's clear what was going on. There are aspiration concerns, so she is on strictly G tube feedings for now, nothing by mouth. It's already not fun, because she's clearly interested in food. When she is recovered, she'll be getting a swallow study. I have asked a few times about a swallow study at her feeding clinic, but they have always said it was unnecessary. I will be mighty upset if it turns out that all her troubles recently have been from aspiration.

 She's still scheduled for her palate surgery next Tuesday, May 1. I was worried this latest illness would affect things, but she's still on, unless she's very congested. So, she'll be back in a hospital (a different one) next week, if all goes well! A nutritionist stopped by Zadie's room on Saturday. She said she looks like she's doing great on breastmilk. I asked her if she had any experience with the blenderized diet. She didn't seem to have too much experience with it, and mentioned how much work it would be. She mentioned that bacteria is a risk of that diet, because food is more likely to be caught in the tube. That seems like just another excuse. She also said that formula is already made to have all of the proper nutrients, etc. It's weird that a nutritionist thinks formula is better than fresh, real food. It seems like, for some reason, most medical professionals are not too enthused. I don't get it!

The nutritionist also said that breastmilk should be enough for Zadie past a year, maybe to 15 or even 18 months! So I had been planning on quitting pumping soon, but I guess it looks like I'll be doing it for a little longer. And I guess that means that I should finally BUY a pump, rather than keep renting the hospital pump. Zadie should be released today. She got her batteries recharged and enjoyed the chest PT from the nice respiratory therapists. She's ready to get out of this crib and back to cruising around the house. And hopefully not coming back here any time soon!

Thursday, April 19, 2012

The blenderized diet.

Since Zadie is getting close to turning 1 (crazy!), I've been thinking about what she'll be "eating" when breastmilk alone is no longer enough for her. Most people who are tube fed are fed formula, and I'm really not crazy about the idea of switching Zadie to formula after all my hard work pumping for the last 10 1/2 months.  I thought I could just puree up real food and put it through her tube (while still working to get her to eat orally).  Apparently, there is something called the blenderized diet, which is pretty much what I was imagining.  And apparently, it's sort of crazy talk in the medical world.  I brought up the idea to the nurse practitioner at Zadie's feeding clinic, and she was very discouraging.  The biggest thing she kept mentioning was how time consuming it would be.  That seems like a silly reason not to do something, if it's something that's good for her.

So I started looking into it more and I found out that it not a common practice, but every parent who uses it swears by it.  A lot of moms whose children were previously formula fed and then moved to the blenderized diet said it was the best thing to happen to their children.  A lot also said that their children were more interested in EATING real food once they had real food through the tube.

One thing I learned was that I needed a good blender.  It's doable with a standard household blender, but a professional grade blender makes things easier and faster.  I emailed the two big blender makers, Blendtec and Vitamix.  I had heard that they both offered a medical discount (their blenders run about $500-$600!) and also donated blenders regularly to tube fed people.  Within a day of emailing Blendtec's customer service, and telling them Zadie's story, I was informed that Blendtec was donating a blender to us!

I've been very excited about this blender's arrival, and BJ's been making fun of me (will he be making fun of me when I am able to make smoothies and shakes and daiquiris?  I don't think so).  Well, it arrived today and without even reading the book, I pureed up some avocados for Zadie.  I fed some to her by spoon, and she did ok with it.  A bunch came out her nose, which is something I won't miss after she has her palate repaired!  Whatever she didn't eat, I blended up some more and put it in with her milk through her feeding tube.  This is very exciting, and while we have a ways to go, I am less anxious about her moving away from breastmilk.  And I'm getting excited to quit pumping soon!

Friday, April 6, 2012

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!