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Tuesday, August 3, 2010


Is there a better example of beauty than this? I think not.

OK, maybe this... but seriously. How cute is she?!

Here's the latest.

Weight: 4140 grams, or 9 pounds 2 ounces. She has gained 33 grams/day since arriving at CHOP. That's a little more than an ounce a day. She's still on fortified breast milk, 26 calories/ounce. She's also measuring in at 19 inches long.

We are officially off High Flow Nasal Cannula! I thought the transition to regular nasal cannula would be more exciting, but really, the only change is that her air is cooled instead of being heated. Kinda a letdown on the excitement factor, but oh well. She's on 2 liters, and her oxygen is set to about 30%, 35% while sleeping. She's starting to have periods of apnea (15 seconds or more of "forgetting" to breathe) while sleeping, which is silly, since she's supposed to be way too old for that. We're hoping she'll grow out of it.

Heart: No changes here. Everything continues to look great cardiovascular-ly. And yes, I just made that word up.

GI: Charlotte Amalie's feedings were moved into her belly today! If she does well tonight, they'll try a small amount in a bottle tomorrow. Speech will evaluate her tomorrow and we'll decide sometime this week if she still needs a swallow study, or if we can push on and try to "teach" her to orally feed. She still has a fantastic suck reflex, so we're really hoping she can figure out the swallow and breathe part of eating. She looked pretty uncomfortable when I left her today, which is kind of to be expected-- she hasn't had food in her belly in a really, really long time, and so I'm sure she feels like she just at a Thanksgiving dinner. Hopefully she'll adjust to it tonight and will be ready for a bottle tomorrow!

Eyes: No real update here. Her right pupil continues to be smaller and slower to respond to light than the left, but the general consensus is that it's scarring from her surgeries. It's hard to not know what her eye sight will be like. It sounds funny, since it's not a life-or-death thing, but her vision is one of the things I worry about the most.

Meds: And just for my record, so I can remember when I read this in the future, Charlotte is still on two different diuretics (Diuril and Aldactone), potassium chloride (discontinued and then started again this week), two different breathing treatments and a slew of vitamins.


  1. She is GORGEOUS! and so big and chunky!
    I 100% agree with you on the high flow to regular nasal cannula-- the only excitement is a) what it really means and b) a piece of equipment (the humidifier) is removed from the room. There should be a party or something to celebrate this momentous occasion that you have been waiting for through intubation, CPAP, High Flow and all the repetitions of each as you head to the world of off the wall.

  2. She does look beautiful!!! I love the hat!

  3. oh she's a cutie. 9 lbs? AWESOME. go CA go!

  4. Wowser, she is really cute!! I can hardly wait to meet her.

  5. It kind of looks like she's giving the devil horns in that first picture. Rawk on Charlotte!

  6. oh i LOVE those kissy cheeks!! :) so very cute!