Shirley's Grand Adventure

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Slowing down.

Yesterday was a big day for Shirley! She was on the news and she was getting used to a new room in the hospital. Today during morning rounds the docs had some concerns about Shirley's heart rate overnight. She had another bout of tachycardia yesterday so they are watching it closely. They are still trying to wean her off some drugs that help her heart to pump but they also are adding a drug to help her perfusion. Seems like they're robbing Peter to pay Paul to me... but what do I know? There is some confusion as to why her numbers are the way they are right now but its nice to have so many great minds come together trying to figure it out! 

We have a consult with occupational therapy soon to help Shirley with oral skills. Most babies don't need to learn how to breastfeed and if they do its something that takes place relatively naturally. There are, however, children that have difficulty or will never be able to breastfeed. Because Shirley was fed intravenously for 10 days she never really had the chance to learn these "oral skills." The goal now is to teach her how, with the hope that some of the instinctual behaviors will be resurrected and she will be able to latch and suckle normally. She has responded well to the pacifier and we know she wants to suck but it can still be difficult to transition to the breast. 

Right in the middle of writing this she had another episode of tachycardia. It was not a very fun sight but it was so brief that she calms down rather quickly. It was good that it happened during the day while we were here so the docs have a solid time stamp for the event rather than seeing it after the fact. They are analyzing her rhythm now. 

It looks like we'll be in the CICU for at least another 24 hours (probably longer).

Thank you everyone who has offered to help with our home break in. A lot of people have offered their televisions and the like but we are currently just trying to focus on Shirley and will be dealing with the material things at another date. Again, thank you so much for the support!

Here is a video of Shirley giving us a cute little smile!

-Joseph