Smiles and Other Cool Things

Smiles

Alexandra continues to improve with each passing day.  Since her surgery last Monday, she has been "a very different baby".  We've noticed it, her grandparents have noticed it, and her treatment team has noticed it.  To reward her for her hard post-op work, her IV nutrition has been stopped which means the IV in her arm - which she probably thought was a giant spear sticking out of her arm - has been removed.  In turn, she rewarded us with smiles... LOTS and LOTS of smiles.  Sometimes she even giggles a little.  We think she must like smiling and giggling because she even does it in her sleep...  She also seems to be more relaxed and is literally breathing easier.

Other Cool Things

Probably the biggest thing to tell you about is her breathing.  During surgery she had to be intubated again, but post-op she quickly went back to CPAP on her pre-Op settings.  By this morning, all of her labs and x-rays were looking really promising... soooooo...

(imagine the sound of a drum roll in your head)...

(Dramatic Pause)...

Around noontime today, she had her CPAP mask taken off.  This is HUGE!  She's now on something called a high-flow nasal cannula.  This still provides a small amount of pressure to keep her lungs open, but it is so small that she is really doing all the work of breathing on her own.  We'll be on pins and needles over the next few days as we watch to see how she responds, but here's what we saw in the first few minutes:

She was initially a little fussy.  Who knows if she was fussy because we were "messing" with stuff on her head, or if she was just a little taken aback by the suddenly missing items on her head and face (items she may not have liked, but probably cannot remember not being there).  Either way, she fell back asleep.  She didn't appear to be working to breathe and her vitals were all looking good. 

Next Steps

Now that she is not getting CPAP pressure any more, she's gonna face her next challenge: feeding.  There are many questions she'll have to answer... She's been fed via tubes and IV's her whole life, so can she eat?  Will she know what hunger pains are and respond appropriately?  Will the esophagus function properly?  Will she aspirate (get milk and/or stomach juices into her lungs)?  We are hopeful she will be just fine, but only time + Alexandra will tell...

So keep your fingers crossed and check out the latest pictures!

I'm all smiles!!!

Here's what I look like without all that stuff on my face!!!