Charlotte's Journey Home

Just a Regular Kid, Sort Of

Miss PICU 2005

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In case you weren’t tracking the calendar quite the way we are….Charlotte’s surgery was one month ago yesterday. This week has finally been one of stability and growth. On Wednesday, Dr. Stewart weaned some of her Flolan (the IV drug for pulmonary hypertension). Her respiratory rate went up a bit so he held off weaning anything yesterday. Today they stopped the Flolan completely. This time her breathing rate stayed within normal limits, but the nurse thought that she was working too hard to breath, using non-breathing muscles. None-the-less, the doctors seemed really happy in afternoon rounds today.

We’ve still got to get her off of the Vapotherm. She’s on 6 liters/hour. Since the weaning rate for that has been 1 liter/day, we’re guessing she’ll be in the PICU for at least another week. It’s just a guess. The doctors don’t really tell us anything past what they might do tomorrow.

Charlotte is growing, finally. She’s up to a whopping 2.83K (not quite 6 lbs. for the non-metrics among you.

Mostly, she’s doing normal baby things…turning bright red and screaming to get a diaper changed, snuggling when we pick her up, loving her pacifier, enjoying some tummy time on the boppy (thank you, Mary), and charming all of her caregivers. Dr. Stewart told us today that Charlotte is in the top 40% for cuteness. It works like this—“the middle 40% are cute because most babies are cute. The top 40% exceed that level of cuteness. And, to be polite, we don’t talk about the other 20%.” Well, our CV team sees a lot of babies (they do at least one heart surgery a day), so we think they probably know about cuteness. Of course, we think she’s the cutest of all, a shoe in for “Miss PICU 2005.”

I’m forwarding an email I sent to a few of ya’ll this week with a link to photos. You’ll need to log in to Ofoto to see the pics. If you don’t have an Ofoto account, follow the Register link to create a free membership. The photos are a sample of the +12 rolls we’ve taken to document Charlotte’s journey so far. We’ll update the electronic brag book regularly in the coming weeks, so feel free to check back for more pictures!

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Author: Culture Bean

I am a mother, a pre-published children's author, and a published academic. I am also a "mommy blogger," though I hate the term. My passions are reading and writing. As a professor, I strive to help my students think critically about the media and culture with which they engage. I've started this blog because it's time I put my money where my mouth is!

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