Saturday, July 26th – Another day stronger…ending with a date

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Riley did well overnight.  No issues, no complaints, no massive poops.  At least none reported.

During rounds, docs decided to up her feeds to 27 cc’s (from 25).  CPAP settings will remain the same for now.  

Ian and I have noticed that Riley has been desatting frequently when she eats (is being fed through her oral gastric tube) and it’s basically the only time presents with this issue.  She also becomes very antsy and squirmy, arching her back, making occasional painful grimaces, and even sometimes is fussy and cries (which otherwise, she is not at all a fussy baby).  This is all difficult to watch, because it’s obvious Riley’s uncomfortable, there is nothing we are able to do to relieve her discomfort, and then the dinging of the monitor in the background exacerbates the already present anxiety.  We’ve been monitoring this, and I’ve brought it up sort of nonchalantly to the nurses, and no one seems to be concerned (which I initially took comfort in).  The more I watched her, the more I believed she might be refluxing, which is common in any babies, but particularly premature ones.  I decided to bring it up with the medical team today during rounds, and was glad I did.  The nurse practitioner acknowledged by concerns and explained that they will monitor it a little more closely, discussing the potential option for medications to help her out with reflux if need be.  

I’m writing about this because I think it’s shown me the importance of advocating for my little one…we’re her parents, and we know her better than anyone else.  We knew something wasn’t right, and although we’re not able to pinpoint the exact source of the problem (although I’d be willing to make a bet, betting more than just a muffin, it’s related to reflux), it’s important for us to express our concerns because our daughter can’t advocate for herself.  Lesson learned.

I had a nice visit with friends this am while Ian got some yard work done at home.  They treated me to a decaf coffee at Panera:)  Thanks guys!

Another failed attempt at kangaroo care today.  We tried it before her dinner time feeding, and she desatted frequently, sometimes into the low 70s.  After the 3rd desat, the nurse came in to put her back in her plastic box, and I agreed it was time, despite the shortened session.  I wasn’t enjoying it very much, again, with the alarming monitor ruining the bonding moment.  I allowed myself to have a pity party for a few minutes, took a bathroom break, and then told myself to pull it together…tomorrow is another day and we can try it again, and maybe she’ll do better.  Get back to that positive thinkingfor you, your husband, and your daughter.  Done.

So I had bought Ian tickets to see Bill Maher downtown for father’s day, and the show is tonight.  I asked Ian earlier in the week if he still wanted to go, and to my surprise, he said “Yes…I think we need it.”  I’m not overly excited about it, I have to admit, but he’s right…we do need it.  A night to ourselves, watching something other than our beautiful daughter (although we do enjoy this very much), and listening to something other than monitor dings and alarms.   Out we go…will let you know how our “date night” went in tomorrow’s post.

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Taking after daddy already…

 

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Riley’s first profanity…
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