Playing catch-up and an update

First things first.... as I type this it's 9:30 pm and you have been off the breathing machines for...wait for it....wait........ 29 1/2 hours!!!!

Not only are you off the machine but your blood oxygen levels are actually improving.

Get out your twirly skirt and get ready to sing with me!!!

So the laptop was out of commission for a day. Your mad genius father managed to Macgyver it (with only a set of small screw drivers and spit!) and we are back up and running. I tell you your Dad is handy to have around.

We haven't really blogged for three days so forgive if this is long but I have a lot to catch-up on.

First Monday was your two week re-birth day and don't you look marvelous darling! Not only are you off the vent now but you also got your pacer wires removed, the Art line and stitches from your right wrist, and the sutures from your chest tubes taken out. You have so many less wires your almost easy to pick up.

Monday January 24th 2 week re-birthday

On Monday you also had a Laryngoscopy and a Bronchoscopy which Dad already explained here.

Off for your next procedure

Down the same hallway they took you for your heart surgery.

If I never see these double doors again it will be too soon!

The examination of your throat and down to you lungs showed that you have a Laryngomalacia (image 001 and close up 002) It's best described as floppy tissue above the vocal cords that falls into the airway when you breath in. This explains the gasping noise you make when you breath in and out.

They also found that you have a stricture of your trachea (image 003) and, just because you can never do anything boring way, you also have an opening from your trachea to your lungs (image 004) that is very uncommon but not something that will, or is, causing you any problems. It's just unusual.

So there is a surgery that can get rid of the floppy tissue above the vocal cords but they only do this surgery when it's medically necessary (ie something like breathing problems). Your Dad and I are quite surprised that you not being able to breath without the aid of a breathing machine didn't qualify as medically necessary but OK.

The really great news is that BOTH your vocal cords are there, and working great. Now they just think you need more time till you can make a louder cry and such.

The little hat they had on your head during surgery. Adorable no?

I thought it would look cute on your glow horse so he's wearing it now. I don't think you mind. It was a little tight for your big 'o head.

You and Glowy rehashing you day


You are working on your first evil master plan!

Tuesday you had a full body MRI. They wanted to avoid having to sedate you (and then have to intubate you) so we kept you awake so you would hopefully sleep right through the test. We gave you your first bath (with wipes) to clean you up and keep you awake.

You loved liked hated every second of it. Just look at how mad you are!

It took 3 1/2 hours. They said you did great and only moved a little bit so no sedation needed. We got the results today. You have all your ear bones (missing in many CHARGE babies) so yay!

An other than one weird artery to your head (which they are looking into but don't think is important) you look fantastic.

Well there is more to update you on but I can barley keep my eyes open so I will try and post about your first experience eating tomorrow.

30 hrs now off the vent!

You constantly amaze me.

I can't wait to amaze all your Dr's!