Tuesday, September 2nd – 8 weeks old….and back on that roller coaster ride

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So I feel like I may have jumped the gun a bit getting as excited as I did about Riley coming home next week.  I sort of forgot that anything can change from now until then, and already today I feel like I may have gotten my hopes up a little too high, a little too early.  Here’s why…

Came in this am and the nurse was feeding Riley a bottle.  She informed me that Riley had some trouble during her 2am feeding, and needed her O2 to be bumped up to .03.  I personally didn’t feel like this was a big deal, but the decision was made to cut back on the amount of bottle feeds, as it may be too much for Riley right now.  So the plan is to do 2 bottle feeds, and then one tube feed, and so on.  A minor setback, and I was really hoping they could pull that feeding tube today, but it is what it is… 

Here’s what’s really freaking me out…yesterday when the doctor informed me about Riley’s upcoming vaccinations and how some of these kids can have a lot of trouble after getting them, she sort of abruptly said “Yea, I mean sometimes they have to go back on ventilators…that’s how bad they react to the vaccinations.”  Woah, okay let’s not just throw that “V” word around like it’s nothing.  I told Ian and was sort of upset at the way she said it.  Then today, I was talking to one of the respiratory therapists and he asked if there was any talk of Riley going home soon.  So I let him know what was going on and mentioned how the vaccinations are the next big step, then we should be homeward bound.  He then also said that one of the kids he’s seeing right now just had his vaccines and a day afterwards he had to go back on the ventilator.  Good God I can’t even imagine.  Talk about a setback…the thought of Riley going back on a ventilator horrifies me.  I know I need to stay positive, because there are also kids that do just fine in response to the vaccines.  I just keep thinking about Riley’s “chronic lung disease,” and how this may make it more difficult for her.  I think I’m just a bit traumatized after everything we’ve been through, and it seems that with our extreme highs we get the extreme lows, and thinking about Riley being discharged soon is certainly an extreme high.  Ok, back to positive thinking and taking things one day at a time.  Let’s not put the cart before the horse, Brooke.

So about mid morning, one of the nurses and a charge nurse came into Riley’s room and informed me that Riley was going to be moved to a different room.  Really??  After being here for 57 days we can’t just stay in this room that is now our second home??  Apparently they need to keep all the MRSA positive babies in one pod, and this is the reason for the move.  It’s a bit of an inconvenience, but whatever…it is what it is.  The hardest part is going to be remembering where I need to go in the mornings when I’m on automatic and hardly awake.  Riley certainly wasn’t fazed by it.

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The initial afternoon bottle feeding today did not go great.  Riley was semi-awake, but not super awake, but I’ve seen her become more awake once the feeding gets started, so I wasn’t too concerned.  I placed the nipple in Riley’s mouth and immediately she started choking.  It’s hard to explain her choking, but it’s like she tries to cough and she can’t, and then she just stops breathing.  It’s the same thing that happened the other night when I had to have Ian run and get the nurse.  However, this time I was alone.  Although this sort of happened yesterday, she came right out of it after I rubbed her back pretty hard.  Well today was different.  She was a bit more stubborn, and she needed a lot more stimulation.  I rubbed her back and her foot pretty aggressively, patted her back pretty hard…she turned gray-blueish, her oxygen saturation levels dropped down to the 50’s or so, and then she finally decided “Ok, I guess I’ll take a breath finally so mom doesn’t have a heart attack.”  Thanks, Riley.  The nurse came in, I explained what had happened, and we decided to try again once Riley’s coloring and O2 levels returned to normal.  Well she pulled the same thing again ~2-3 minutes further into the feeding…same story, a different choking episode.  By then, Riley was too tuckered out to continue, so we dropped the remainder of her feeding down the tube.  This girl is going to give me an ulcer…

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Not really ready for the bottle today…

I told Ian about these choking episodes, and he came up with a solution.  He thought it might be a good idea to give Riley a sip of his “Rockstar” drink (which is the caffeinated beverage he’s become addicted to ever since Riley’s been in the hospital) before her next feeding.  Oh ok, Ian.  We’ll see how that works out.  Apparently I’m not going to be able to leave him alone with Riley…she’ll be all hyped up on caffeine with a poopy diaper;)

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