Friday, August 22nd – Chugging like a champ…


Came in to Riley’s room this morning to see that she’s made quite an impression around the hospital, with several staff members stopping to tell me how excited they were when they saw her on tv, and Riley even had a hand-crafted sign on her plastic bed made by one of the workers at the front desk, showing off that she is a star🙂


I feel so cool… 

Riley did ok overnight.  She had 4 desats, 2 of which she was able to bounce back on her own, requiring moderate stimulation with another, and one time dropping into the teens, requiring bagging.  No b’s, which is good.  Given the desats overnight, her feedings continued to be provided through her tube overnight, holding off on the bottle feeding.

During morning rounds, Riley’s weekly lab work showed that she continues to be anemic.  The nurse practitioner informed me that approximately 6 weeks following an exchange transfusion, which is where Riley’s at right now, they tend to see this drop in hemocrit levels, which often comes back up on its own.  The med team will continue to monitor this, but feel there is no need for a blood transfusion at this time.  They are going to continue weaning her from the nasal cannula, and are keeping her feedings right where they’re at, given that she’s continuing to pack on the chunk (my words, not theirs, obviously).  They also were pleased to hear how Riley’s bottle feeding went yesterday, and feel we should continue to try occasional bottle feeding (maybe one time during the day) in small amounts, or as she tolerates.  

Mom keeps telling me I should be sleeping…I’ll show her…
Yup, I got all 5 fingers…
Not sure if I can fight it anymore…
Out for the count…

I had setup to do Riley’s bottle feeding today at 4:30pm so that Ian could be present this time.  The nurse decided to let me take the lead, providing me with a few tips regarding placement and positioning, as well as what to do if she stops breathing and desats.  Riley acted like she’s done this whole thing many times before, as she started chugging away as soon as the nipple was placed in her mouth.  Although her whole sucking, breathing, swallowing pattern is a bit discoordinated, it was clear that Riley was totally getting the hang of this whole eating thing.  The nurse watched in amazement, as she had warned us at the start of the feeding that she “won’t take the whole bottle,” and the longest we’d go for would be 20 minutes, but “we’ll see what she can do.”  Well she downed 23 cc’s in 10-15 minutes, which is more than half of her current feeding dose, and she did really well overall.  Don’t get me wrong, she had a few “not breathing” moments, but they became predictable and she was able to recover rather quickly.  Ian cheered his daughter on and occasionally took a picture or video, feeling this was a big moment.  And that it was…it was my first time feeding my own daughter.  My daughter who bottle fed like a champ today!  This whole feeding thing is going wayyyy better than I expected…what am I missing here??


Riley continues to pack it on, weighing 5 lbs 3.4 oz.  You animal!



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