Saturday, August 23rd – More steps in the right direction…

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Ian and I both attended rounds this am, and we were glad we did.  The medical team decided that it might be a good time to switch Riley over to a low flow home oxygen delivery system.  I’m not sure if I’ve completely comprehended the mechanics of this new system, but from what I understand, the device delivers 100% oxygen, but since Riley is also breathing in room air, the amount of oxygen delivered to her lungs is lower than 100%.  So now instead of weaning that oxygen % number, they’re weaning the liters.  Riley had been on 1 liter before, and now they’re starting to bump her down by putting her at 1/2 liter, and then 1/4 liter, and so on.  The doctor seemed to think that this change might help to reduce Riley’s desats, and also help to increase and improve her oral feeds, getting her another step closer to HOME.  Also, the doctor explained that should everything else be in place (i.e. feedings, maintaining body temp, etc.) and she is still requiring some O2, Riley could be sent home on this same type of O2 system.  

I admit I had mixed feelings about this…it all sounds good, and I overall I think it’s definitely a good call by the doc.  However, following the discussion during rounds, I feel like it’s certainly not out of the question to have Riley sent home on oxygen.  I had envisioned taking our peanut home without being connected to any tubes or wires, but if this is what we have to do and we can bring her home sooner, then I think I’m okay with it.  I think…

Shortly after rounds, Ian and I headed home to meet his mom and sister, who were visiting from Meadville today.  Riley got more toys and clothes, and we took a trip to Target and ordered a bassinet for when she comes home (thanks Helen).  This way, I can keep a close eye on her when I lie awake worrying about her and she’s sleeping soundly at the side of my bed;)  Kids.

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Had a nice lunch and went back to the hospital to visit with the Riley Mae.  The nurse came in and told us that Riley has being doing great since we left, and did not have any alarms.  This means no desats!  So far so good.  She also mentioned she had already weaned Riley quite a bit, and was down to 1/20th of a liter.  Sounds good to us!  My mother- and sister-in-law could not get over how big she has gotten since the last time they’ve seen her, and enjoyed the new grunts and squeaks coming from their little Riley.  They also enjoyed observing Ian in action during a diaper change, especially when Riley decided to deliver one of her infamous stinky presents:)

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Ian and I had planned to try bottle feeding again around the 4:30 feeding time.  The nurse came in around 4pm to get her milk warmed up, and we decided to weigh her and get her changed before the feeding.  As we were getting Riley undressed, Riley had an explosion in her diaper, and once again, Ian stood there with his shirt over his nose, hardly helping mom with the diaper change in between his dry heaves.  Someone has to get him a mask so he can be a little more hands-on during those #2 diaper changes!  That’s the 3rd big poop of the day, as the nurse had informed us that Riley had a “huge poop” earlier when we weren’t around.  Typical Riley.  Ian lifted his daughter out of her open bed for the first time and placed her on the scale.  Her weight dropped a bit, which is of course not surprising given the amount of waste we just saw come out of our daughter, and she’s now at 5 lbs 2.9 oz (from 5 lbs 3.4 oz).  We then got her dressed in some clean clothes, as she’s anxiously awaiting that overdue bath tomorrow, and got her ready for bottle feeding attempt #3.  

Feeding couldn’t have gone better today.  Riley took almost all 43 cc’s, leaving only about 6 cc’s in the bottle, as she became tired and started to desat a little bit towards the end of the feeding.  However, throughout the entire feeding, she was able to maintain her vitals, requiring an occasional break and a verbal cue from mom and dad to “breathe” as we watched her chugging away like a thirsty frat boy.  That a girl, Riley Mae!  Keep it going!  One day stronger, one day closer to going home…

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We kissed our girl good night and told her to behave herself, as we always do.  Then I caught Ian whispering to her, “You’re so lucky pumpkin…” and then I hear “…because you look just like your daddy.”  Such a proud father… 

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