Thursday, July 31st – Looks can be deceiving….


Daily poop description (from same nurse as yesterday morning): “Another huge poop this morning. I turned away for one second with her diaper down and the next thing you know there was a mess everywhere.  I had to change her bed sheets and everything.”  Yup.  Been there done that.

So today was a BIG day…maybe moreso for mom than Riley, but I feel that should count, too, right?  I finally got to play dress-up….Riley got to wear her first onesie today!!  The nurse had actually informed me yesterday that I can start bringing in some onesies because Riley is big enough to wear them now (I was tempted to run home and get some I was so darn excited but was able to contain myself and wait).  So last night Ian and I picked out which premie outfit would be her first.  We agreed on the pink one with an adorable bird on the front (thanks Ian’s work people).  

The nurse put the onesie on Riley today and she looked like a new little woman!  Cute and pink.  However, her feistiness remained evident, pulling her CPAP cannula out of her nose and giving evil looks, reminding me that she is still the same crazy child inside, cute outfit or not:)

The infamous look…


Only change during morning rounds was the decision to further bump Riley’s CPAP settings down, and specifically taking the pressure down again from 6 to 5.  The nurse practitioner indicated that this lower pressure setting will also hopefully help with Riley’s reflux, as she continues to primarily desat during feedings (likely related to reflux).  Also, Riley continues to get that caffeine every day (which if you remember from my previous post, is a drug that helps sort of jump start her nervous system and reminds her brain to get those important systems working).  As Riley continues to grow and do well, she will no longer need this drug and it will be discontinued.  The nurse practitioner also mentioned the possibility of introducing a reflux medication as well if need be, but the caffeine would have to be out of her system first, which can take as long as a week.  They confirmed they will continue to monitor her closely.  Sounds like a plan.

Riley had an okay day on the new settings.  She had frequent desats today (mostly during feedings), with an occasional bradycardia as well.  She is sometimes able to bring herself out of these, but occasionally also requires a little boost in O2.  However, there was also an instance today where Riley desatted quite low (into the mid 30s) and the nurse came running in and appeared somewhat panicked…patted Riley on the butt and when she still didn’t respond, lifted her up and said “You have to remember to breathe, ok.”  Riley looked at her like “Geez I’m sorry if I could I would.”  My heart dropped for a few seconds during this event, but I remained relatively calm.  Sometimes I’m actually surprised at how calm I am during times like that.  I don’t know if it’s just that in comparison to the “night from hell,” instances like this don’t seem that bad, or if I’m just sort of numb and one day I’ll crack.  I’m hoping it’s not the latter.  

Overall, I’ve learned to pretty much ignore the common “ding, ding, ding” from the monitor, which indicates that Riley’s starting to slowly head in the wrong direction, but the “CLANG, CLANG, CLANG” obnoxiously loud alarm accompanied by a red flashing light that goes off when she has a bradycardia or a low desat (below 80…today some of which were down into the mid 30s)…yea not so much.  Still drives me crazy and makes me a little nervous.  Can’t help it.

Ian was at his charity golf outing today, which is associated with his Northern Appalachian Landman Association (NALA).  Since he’s the president,  he gets to choose where the donated money goes to (which is raised at this golf outing).   For the past 2 years, he has donated to a program very near and dear to my heart (PIRATE), which is the intensive aphasia treatment program that I’m involved with at the VA.  This year, he decided that in addition to PIRATE, a portion of the proceeds will go to Magee’s NICU.  How awesome is that? Go dad!

OHH my! Can’t believe how long my hair has gotten!
I may look cute and innocent…


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