Sunday, September 7, 2014

Daniel's Update: Sunday, August 7 (morning)

Good Morning All!

Caution, I'm riding a solid 5 hours of only semi-broken sleep (a good thing) and a 12 oz Red Bull (even better)... so this email may read the way it was written... jacked up.  I'm typing as quietly as possible, because everyone in my house is sleeping and I intend on keeping it that way!  On to an update on Little Bit....

Our little Caroline is doing much, much better.... though she's been a pin cushion the past few days.  She has the misfortune of having MP's veins, which means that even the amazingly skilled docs and nurses at Rex can't establish and maintain good lines in her.  But no worries, she's improved to the point where she doesn't need an IV anymore!  Well, that's half-true.  She could use it, but the doctors think that she'll do just fine maintaining her hydration through feedings, which was the main concern.  She's still got the NG tube (feeding tube in her nose) and that will be there until she can take an entire feeding through the bottle.  She's about halfway there... It's like Thanksgiving... you just NEED that nap after all the good food.  She's steadily increasing the amount she's eating (on a prescribed schedule)... but she gets lethargic and sometimes falls asleep near the end of the feedings.  I can't blame her.

We get lots of time with the doctors after their rounds here in the NICU, which is awesome (and needed).  Yesterday Steve stayed with us for about 10 minutes.  Not Dr. Parsons, just Steve.  An interesting vignette on caffeine... If you've read my previous updates you'll remember that Caroline needs caffeine as a little extra stimulatory reminder for her brain to tell her body to breathe. This response is usually functionally developed by 34 weeks, which will bethis Wednesday.  Steve let us know that yesterday's dose of caffeine would be her last.  Naturally, I asked if her Brady events had spaced out to the point where this wasn't needed.  He responded by informing us that the caffeine would stay in her system for 4-5 days (through the 34 week milestone) and gave us a nugget on the dosage.  If you or I were to walk into a Starbucks and order a Venti coffee (light roast = more caffeine), chug it down and toss back two more after that, our caffeine dosage would be about "6".  Caroline is getting a "20".  Sign me up.

So, Caroline is down to one tube and progressing well!  If she keeps this up, there's a chance she'll come home at 37 weeks (October 1; the day of the originally scheduled C-section). We're keeping our fingers crossed, but know this is marathon, not a sprint.  She's in very, very skilled hands and we're more than content to have her stay until everyone on the medical team is certain she's ready to embrace the craziness of 4843 Radcliff. 

Kind Regards, 

WDA

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