Friday, August 29th – Let’s put an end to this crazy week…

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Riley Mae was wide-eyed and bushy-tailed this am when I came in, looking like she was ready to get into some trouble.  She had a bottle feeding about 30 minutes before I came in, and did really well, per the nurse.  The nurse also mentioned that RIley had a low desat into the 30s early this am and needed some extra O2 via face mask to help her come back up.  However, the nurse had also weaned her oxygen level last night down to .03 liters, and overall, she has been tolerating it pretty well so far.

During morning rounds this am, the medical team informed me that Riley’s hemocrit levels continue to be low based on her labs today.  She has continued to drop a little bit each week, and has had a low count for the past month.  The docs feel that it’s a good idea to go ahead with the blood transfusion to help with Riley’s anemia, which may also in turn help reduce her desats even further.  Once Riley’s anemia issue is resolved, it will be one more thing they can check off the list…the list of things potentially attributing to her desats.  Unfortunately, this also means that they have to hold her feedings (tube, bottle, and breast) for the entire day, and will resume them tomorrow morning ;(  Just as we were getting into the swing of things…

Where’s my bottle at?

It’s funny how looking back on all that Riley has been through, particularly in that first week and a half of her life, you would think a blood transfusion would feel like no big deal.  And I feel like at that time, when she had so many other critical issues, and we knew a blood transfusion was saving her life, we didn’t think that much about it and it sort of just blended in with everything else that  needed to be done…just another medical procedure.  And as horrible as this sounds, I hadn’t yet felt that mother-daugther bond with her back then, because again, she was just so medically compromised and the focus was all on making sure she survived…the bonding could come later.  Now, it’s different, and the bond we have with Riley is indescribable.  I hate to have to see Riley go through this.  I wish I could go through it for her…it would be so much easier.  However, Riley “fighter” Mae Lang is a tough cookie and she can take it…we know this.  After everything this girl has been through, it’s just one more little bump in the road that’s going to make her that much stronger in the end.

Not happy about this…at all.  Aren’t I strong enough??

So I got booted from Riley’s room shortly after rounds so the nurse could place the IV.  It took about a half hour and an extra hand, as they had some difficulty getting the IV inserted due to Riley’s extreme kicking skills and her veins not being “as plump” because of the anemia.   We had to wait for the blood to arrive, and I got antsy sitting there waiting, so I kissed Riley goodbye and left.  However, 5 hours later, when I called in to see how things were going, they still didn’t have the blood.  Really?  So I went back into the hospital to hang out with Riley, because it was killing me not being with her, and the nurse informed me this morning that from start to finish the procedure will take about 6 hours.  When I got back to the hospital, Riley was quite fussy (which isn’t her usual)…probably wondering where the heck her bottle was.  I decided I was going to cuddle with her a bit, and as soon as she was in my arms, she was calm and content.  I felt that my presence had consoled my child…and so I felt purposeful.  No longer helpless.  Of course she became too comfy, and had a low desat, but whatever.  This is Riley.  


Once the blood arrived finally at 4:30pm, I got kicked out again.  Back to that sit and wait game…feeling a bit helpless and watching the clock way too often.  I haven’t missed this game…


To be continued…


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