Sunday, August 31, 2014

Daniels update: Friday, Aug 29

I know a lot has happened since Friday... But I wanted to include Daniel's update. It's always great to hear the fatherly take on things.

Hi Friends, 

Little Caroline had a pretty good day yesterday.  She moved off the CPAP and onto a nasal canula (think "tubes for old people with oxygen") and has kept her levels up.  I'm not sure if she'll move off of this anytime soon, but that doesn't bother me since I want her to have as much oxygen as she needs.  Her little brain hasn't developed to the point where it continually says "hey there lungs, breathe!" (though it will) and from time to time she has a "Brady event".  Bradycardia is a slowing of the heart, in this case because her brain isn't sending a signal to her lungs.  We've been told that this is extremely common in premies and most grow out of it. That doesn't change the fact that it is one of the most disconcerting experiences one can have.... this is also the reason for the daily doses of caffeine.  Another common experience for premies is a heart murmur and, you guessed it, she's got one.  It's not unexpected and if it doesn't resolve on it's own it's usually a medication-issue, not a surgery-issue.  Caroline took the chest tube out all by herself (what can I say, she's Type A, like me) and did well without it. Two of the three belly lines were removed, the one that's left is for nutrition and may stay for a little bit. This meant that MP could hold her!  It was a bit bittersweet, because when you jostle something that small and move little lungs that are just barely keeping up with the uber-high demand being placed on them... it tends to throw things off.  Her oxygen levels dropped despite having been raised from the "machine" side.  As soon as she was put back in her room at the spa (incubator), she went back to being the perfectly normal intensive care baby the staff is growing to love:  ... she better not be a diva.

The doctors have told us to get ready for two steps forward and one step back.  This is the regimen and we should expect ups and downs. I was once called aggressively festive... I'm going to be aggressively positive going forward.  I've had my breakdown in a hospital bathroom outside of earshot of anyone I knew and I'm sure I'll hit another wall, but I'm committed to being positive with every ounce of my body and I hope you will all join me.  My little girl has a hell of a road in front of her and she's crushing it right now.  She's going to keep crushing it and we're all going to be in her corner, right?  RIGHT?

I'm not a jewelry man, but the little white band on my right wrist is my ticket to get into the NICU.  I've got a buddy who is lighting vigil candles each day for little Caroline.  We're both going to be committed to our vigil / jewelry until she's out.  If you're of the praying variety, shoot a few words up if you can, this is not going to be easy for her, but that's life, ain't it?  

Today I bought  the nicest bottle of wine I've ever purchased to celebrate when Caroline comes home. I did this when I was BRINGING Mary-Peyton HOME!  I don't know why I didn't capitalize Mary-Peyton, but, then again, we're probably going to sleep by 8:30 tonight if we can get Whitaker down.My wine collection (read: like, maybe 11-ish bottles) is open to everyone on the day that happens.... but be quiet on the deck because there will be babies sleeping, jeez!  

Please continue to pray if you can.  There is likely another month and a half to two months of this left and this will not be an easy hike.  Keep your eyes out for updates.  I'll probably forget something from time to time and I'll pass it along. Here is a pic or two... note that Lambie's still holding strong (you can only see her ear, but she's there).



No comments:

Post a Comment