Day 100

yup, my baby girl is officially 100 days old today.

Nothing big today. Doc thinks she looks even better today than she did yesterday. She's still squeeking, but it was a little better. They took her down from 3 1/2 L to 3L. Still don't really know what that means, but I know it's a good thing. She's still on her continuous feeds - doc doesn't want to mess with anything else until we pretty much know if she's gonna fly with the triple-H stuff or not.

yesterday's brain ultrasound was stable again. Doc things we might have missed the bullet on the shunt stuff. Definitely a good thing.

And Jaime is now obsessed with trying to eat my nose. Really.

7 july

well, we are still off the vent. Blood gasses still look good. They are going up a touch (43, 50, 53), but they are still lower than most of her gasses were while she was vented! She does have a touch of strider (squeeking from a floppy airway) and is working to breathe, but she's hanging! No additional oxygen, and they actually took her down a big on the high flow stuff (from 4 to 3 1/2. I have no real clue as to what that means, but it's just for those of you medically peoples out there.) She gets her last dose of steroids tonight, so tomorrow night is the next big hurdle. Things could get worse as they wear off. So I'm contemplating staying at the hossy overnight. We'll see. The doc says that if we make it through the weekend without having to be reintubated, that she should fly. I just don't know if I can handle a set-back at this point, so please pray for success!

Jaime has been just a dream. Last night, he went to sleep so well. I started to rock him and David went outside to pull his car into the garage. By the time David got back in, Jaime was out! I just love cuddling with him. Oh, and he didn't have oatmeal for breakfast!!! I went out on a limb and tried soggy cocoa krispies. it took a while, but he ate the whole thing!!!

Have I mentioned recently that my kids are the best?

Oh, and good luck at home Miss Zoey!!!

6 July 5:00

Still on the high humidity stuff. 4 litres, roughly 30% oxygen. She has not alarmed since getting switched over. In fact, her SATs have remained in the 90s. **knocking on EVERYTHING wood in reach**

It was so nice being able to pick her up on my own, when I wanted to. And if we got uncomfortable, we could readjust on our own. Such simple things can really bring such pleasure.

But of course, I'm still afraid to get my hopes up. If she's still off the vent come weekend time, we should be good. But she's been off for a while before. I desperately want this to work, and she's doing so well right now. So how do you NOT get your hopes up?

6 July 12:30

Tube is out. We are on humidified high-flow. Right around 30%. SAT-ing 97, heartrate of 157. Two blood gasses ordered for later. Those will be the biggest hurdle. then getting off the steroid. Doc says we should know if we're gonna fly by the weekend.

4 july

fingers crossed. we have started the steroids (though IV, at least today).

3 july

same old same old. They are still sucking more and more gunk out of her. Nothing showing signs of infection though. Blood work, xray and labs are normal. So as of right now, the plan still is steroids tomorrow and extubation on Monday.

And she hit 6 pounds tonight!

Jaime seems to like being back home. We spent the whole day together. He'd follow me around. I survived a tickle attack. And he now likes to "go crazy" which means he kicks or stomps a lot while laughing. A little wiggling mixed in too. And he tries to say "go crazy." So cute.

happy 3 month birthday

Nothing too spectacular going on, but I wanted to publically wish my baby girl a happy birthday.

She's had fewer "episodes" since getting reintubated yesterday. Seems like putting it in a little farther/further (whatever) is bothering her less. She should be having an upper GI study done Thursday. Just a precursor to the possible g-button next week. Nothing big. And she was FINALLY decent for Nurse Amy.

I did some scrapbooking of my girl today. Got home and showed Jaime one of the pages. It was so cute. He started reaching for it. I asked him if he wanted to give baby sister's picture a kiss. And he leaned in to do it! I can't wait until I can let the two of them meet. yeah, that part sucks.

Oh, and she's officially gained 4 pounds since birth. 4lbs in 3 months. IDK, but sounds good to me.

And lastly, I must send a shout-out (yeah, I'm that old) to my buddy Logan who finally got to go home. Happy late 7 month birthday buddy! Glad you are where you belong.