Wednesday, September 10th – The looks say it all…

Telling secrets to my imaginary friends again…


Chalk up another good night for Riley Mae.  No issues, and feedings are going pretty well, with only one desat over night and she’s requiring continued pacing.  

No changes during rounds.  I was hoping we could maybe wean Riley’s oxygen, as I’m not convinced she really needs it, but the nurse practitioner felt we should leave her where she’s at (on .03 liters) to avoid any additional b’s or d’s, and then send her home on the same amount of oxygen, as this may allow for the trip home to occur sooner.  Whatever we need to do to make that happen…

Riley’s bottle feedings went pretty well today.  She rocked the first one, without having any d’s or choking episodes.  We celebrated afterwards and I praised her up and down, giving her lots of hugs and kisses, like this was a huge victory….because it was a huge victory.  During the second feeding, she was a little more tired and towards the end she had a choking episode, desatting into the 50’s.  She did have a color change and required some stimulation to take a breath.  No celebration after that one;)  Finally, the last bottle feeding was probably the most difficult, and it could have been due to the timing of it all.  It was her third bottle in a row and happened right after a bath, so she was a little pooped.  She needed extra pacing and also occasionally just forgot to breathe, dipping down into the 70’s, but coming back up with a little stimulation.  All in all, not a bad feeding day. 

Did you short me on that bottle??
Give me my dessert….or else.


Today is bath day, and I decided to give Riley a bath with the nurses assistance, as Ian wasn’t getting in to the hospital until a little later today, and he was concerned that Riley was making mad faces because she smells funky.  Could be.  So the nurse assisted me and it was pretty much all business.  Riley didn’t seem to mind it, and hardly fussed.  Some might say she actually enjoyed it.

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Halfway through her bath, I hear alarms going off next door, and then I hear the nurse yelling “I need help in here!”  Next thing you know, the medical team is sprinting past Riley’s room to the room right next door, and I immediately thought “Oh God, this can’t be good.”  I felt my heart begin to race, feeling immediate panic, and my mind became flooded with the traumatic events that occurred the night of Riley’s hemorrhage.  I began to have flashbacks of Ian and I sitting in the hallway in the wooden chairs, looking in at Riley’s room at the monitor reading zero as the med team was trying to resuscitate her, and hearing those words from the doctor “We’re doing everything we can, but she’s not responding.”  And then my thoughts went to the poor parents of the baby next door, and what they must be feeling in this moment.  Pure and utter hell.

We finished up Riley’s bath, I gave her the bottle, and then we snuggled for awhile afterwards.  I couldn’t help but continue to think of the situation going on next door.  There I was holding my baby who is currently only requiring a small amount of O2, is able to take her feedings from a bottle, and is overall doing really well…and right next door there are parents going through a very familiar nightmare. I even heard the mom ask what she should do as she was in tears, asking “Should I sleep here tonight?” and the doctor recommended that she “Go home and get some rest.”  Right, sure.  Impossible.  Anyway, this event today just seemed to bring me right back to Riley’s 2nd day of life, and reminded me of how far we’ve come…how hard Riley has fought to be where she is today, on her 66th day of life,  and what a miracle we have on our hands.  You bet I gave her a few extra squeezes and kisses during our snuggle time tonight:)   Another day stronger, Riley Mae…another day closer to home…

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