Thursday, September 4th – Close but no cigar…

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We had a pretty good start to the day today.  Riley had a good night, and did okay with her feedings.  We’re still on the schedule where we’re doing 2 bottles to 1 tube feeding, and Riley continues to occasionally require some of the feeding to be dropped down the tube after the bottle feeding, as she sometimes becomes too fatigued to finish.  She had her eye exam this morning, and the result showed that her eyes are mature, so she does not have ROP (Retinopathy of Prematurity)!!  We were all very happy about this, as this is great news!!  Riley will just need to have a follow-up exam when she’s 6 months per the usual protocol.  I asked about the plan for Riley’s vaccinations tomorrow and Saturday, and she will be getting the DTap, Polio, and Hep B vaccines tomorrow, and the Pneumococcal and Hib vaccines on Saturday.  The med team mentioned that they like to get the DTap vaccine over and done with right away, as this is the vaccine that sometimes causes problems in these kids.  Otherwise, the plan is to continue working on the bottle feedings.

Dreaming of my rebellious future…

Riley was actually receiving a bottle from the nurse when I came in this am, and the nurse reported she had done well, only having a small choking episode which she was able to recover from pretty quickly.  I fed her at the 11:30am feeding time, and gave Riley a big pep talk beforehand, reminding her to breathe, asking her to please be nice and not scare the heck of her mom anymore, and the nurse even told Riley that “mommy’s don’t like to see their babies looking like blueberries,”  and so we were hopeful that this encouragement and begging would help Riley do her best.  Well it seemed like it worked…she was rocking it.  She had about 20cc’s left and started to get a little tired, but after some burping and a little break, she resumed and finished the bottle…no choking!!  Or so I thought…I had literally just praised the heck out of Riley and told her “what a good job you did” and as I’m pulling the bottle from her mouth…she chokes.  You’ve gotta be kidding me!  And it was a BAD ONE (potentially the worst yet)…the nurse was luckily in the room with me but neither of us panicked initially because we thought Riley would recover a lot quicker than she did.  But then there she goes…turning blue, her O2 saturations dropping into the 40s, requiring a lot of stimulation to breathe again.  It took about a minute for her color to return to her face…I know that doesn’t sound like a long time, but every second feels like an eternity when you’re watching your child blue and breathless, begging them to breathe again.  Damnit anyway.  Close but no cigar…

This feeding stuff is hard work, ya know.

The next feeding went better…no choking episodes.  However, she was unable to finish because she was tuckered out by the end, requiring the nurse to administer the remainder of the feeding through her tube.  

Riley’s big weigh-in tonight revealed continued gains…coming in at 5 lbs 15.4 oz!  Almost 6 pounds, girlfriend!!

Soooo, you’re sure that packing on the ounces is still a positive thing at this stage of the game???

 Ian came for his usual visit after work.  He did his daily diaper change, and lucked out this round.  It was about 6:15 and I was about to head home.  The next thing you know, Ian says “there she goes” as he’s watching her monitor, and Riley has a bradycardia and a desat (b and a d), causing her monitor to alarm.  She came out of it on her own eventually, but then about 2 minutes later, she had another b and d.  What the hell is going on here?!?  Ian and I sort of just stood in Riley’s room, watching her, watching her monitor…watching in shock and disappointment.  It must be a fluke…she’s hasn’t had one of these episodes in quite some time.  We thought she had jumped this hurdle, as we’ve read that around 35-37 weeks, these kids grow out of these episodes.  We thought Riley had achieved that goal.  Ian and I left the hospital tonight feeling kind of devastated, and definitely frustrated.  Extremely frustrated.  This also likely sets her potential discharge back, as the docs typically don’t want these kids to have any b’s for about a week or so before they feel comfortable discharging them (understandably so).  “What are you doing to us, Riley Mae?” asks Ian, “Does she even know what she’s doing to us?” he asks me.  She sure is giving us a run for our money…and the closer we get to discharge, the harder the wait has become…

I had lunch with a good friend of mine today, who has gone through a lot of ups and downs with her own children for various reasons.  As she’s gone through her own dose of hell with her own kids, she explained to me simply and very matter of factly that “There will be a time when your shit’s cool.  Right now, your shit’s not cool.  And you’re always going to have shit going on, but at some point, you’ll be able to say ‘Yea, shit’s cool.”  She obviously likes to swear a little bit.  So do I sometimes:)  I sure hope our “shit’s cool” one day soon…

At least I appear cute and innocent…


If this look doesn’t say it all….good God we’re in trouble…


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