Tuesday, August 26th – Ups and downs…

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 I want to start off by saying thanks for the kind messages after yesterday’s somewhat depressing post.  I had hesitated to keep all of my raw emotions in that post, but decided to share what’s really going on inside my head and my heart.  Today is a better day…a fresh start…positive thinking…

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Morning stretch…

I quickly stopped in to check on Riley before going to a doctor’s appt at 8am this morning.  The nurse told me Riley had a good night, with only a few desats.  She tolerated her bottle feeding at 11:00pm.  I had forgotten to mention yesterday but the nurse decided to pull Riley’s oral gastric tube yesterday halfway through the bottle feeding I gave her late in the day, as she suspected this might help the situation (you try eating with a straw in your mouth…it’s sort of the same concept).  She now has a nasogastric tube, which goes from her nose into her belly.  She still needs this tube since she isn’t bottle feeding 100% of the time, and also isn’t consistently consuming her entire feeding each time.  Anyway, it appears this is making it a little easier on Riley.

I missed rounds, but turns out I didn’t miss much.  Only change is that they are increasing her feeds, yet again, to 50 cc’s (I know, it scares me a little, too…she’s going to be like the hulk before getting out of here).  She’s also 50 days old today.  50 cc’s on day 50…seems appropriate;)  Otherwise, same stuff, different day.

This morning, bottle feeding went really well.  It took Riley halfway through the feeding to get into a rhythm, but eventually she did, and she downed all 50cc’s in about 12 minutes.  Not too shabby.  

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I have to wait HOW LONG until my next bottle??
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This is absurd…
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Talk to the hand…
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If I’m not getting my bottle, then I guess I’ll just have to eat my thumb…
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Thank you…

Riley got moved from her regular open bed to a big girl crib today.  There is really no rhyme or reason why this happened, except that the drawer under her open bed got jammed and the nurse nor myself were able to get it open, so the nurse took matters into her own hands and found Riley a big white crib bed.  Riley is loving it:)  Spoiled princess…

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Daddy came in after work and got to see a good portion of the late day bottle feeding (unfortunately).  Started out similar to the previous feeding, having to take a few breaks and sometimes appearing interested, other times not, but getting through it slowly but surely.  Then about halfway through, it was on…she chugged away.  I often was able to catch the desats before they dropped too low, as I could tell she wasn’t breathing and would pull the bottle away.  However, about 3/4 of the way through, Riley’s face started to turn bright red and I could tell she was choking, but she wasn’t coughing and kept chugging instead.  I pulled the bottle immediately from her mouth, but she still wasn’t breathing. It was almost like she had choked but couldn’t clear it, couldn’t cough it out and then got stuck.   Then the color drained from her face, turning blue, and her body went limp.  Ian ran to get the nurse as we were both scared shitless, and shortly after the nurse came in, Riley began to slowly recoup and the color began to slowly return to her face.  The nurse bumped her O2 up to allow her to recover for a period of time, and Ian and I looked at each other, wondering if this is something we’re going to have to get used to.  Needless to say, she got the rest of that feeding through the tube…

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The “look”…
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Oblivious to the fact that she just scared the **** out of mom and dad…

Not long after this scary event, Riley decided to continue to misbehave.  Ian was watching the monitor (as he often does) and he saw Riley was beginning to have a bradycardia, and in seconds, she desatted into the teens.  He jumped up, appearing quite panicked, and picked her up somewhat aggressively to try to get her to breathe again…as again, the color had drained from her face and she clearly wasn’t breathing.  It was almost like he scared Riley into breathing, and it worked!  The nurse came in within seconds and provided a little more stimulation, and again bumped her O2.  Good God Riley Mae, haven’t you given us enough gray hairs??  The best part is that after one of these episodes, she just looks at us as if to say “What’s all the fuss all about?” and goes back to sleep as if nothing ever happened.  Not nice, Riley…

 Ian and I stayed for a bit after all this excitement, and although we were somewhat afraid to leave, neither of us felt we could take it anymore, as Riley had managed to stress us out quite a bit and we felt like we couldn’t physically stay in her room any longer…sitting and waiting for the next mishap.  The nurse knew we were pretty stressed out, and told us not to worry.  Ian and I expressed how we felt this was a bit of setback for Riley, and the nurse encouraged us that the plan of care remains the same, and to just go home and have some dinner and maybe a drink, and to call in later to check in on her.  We went home – I went for a walk, Ian did some yard work, and we did in fact have a  drink.  We logged onto our nicview camera website and there’s Riley with a note by her head that says “Mommy and Daddy – My temp was 36.3 and I have been a good girl.  Love you, Riley.”  

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I’ve been thinking a lot lately about something my dad has always told us growing up.  “The most important thing in life is your health, which is #1, and then your family. If you don’t have those two things, you don’t have anything.”  Isn’t that the truth…

 

 

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