That's right folks.  Yesterday - I got my first smile in a week.  Open mouthed, tongue out.  I just kept rubbing those cheeks so I could see it as long as possible.  Finley is happy kid - so to go that long without a smile has been SO hard.  But I saw it.  If only for a couple seconds (because then the nurse came to check her blood sugar).  I don't care.  I still saw it.  And it made my day.

Lots of progress for our girl yesterday.  They took her off of high flow oxygen and put her on the regular nasal cannula and she was doing just fine.  Then, at one point, the connector to the oxygen started to go haywire and was letting off a shrill, high pitch noise.  When the respiratory therapist came in to fix it, she had to shut the oxygen off.  She was only getting 21% anyway which is the equivalent of room air.  But Finley did fine off of the oxygen.  So I called the doctor in and pointed out that she was doing just fine without it and so the doctor agreed to discontinue it.  So, our baby is well on her way from looking like this:

The doctors have also decided to do an immunology work up on Finley.  They talked a lot about the culture they took from her throat when the ENT scoped her last week (the docs were smart enough to culture the scope when it came out) and the culture is growing staph and strep.  And while those are two bacteria commonly found in the airway (or so they say) the fact remains that this is the second major infection she's had in her 8 short months (the first was the surgical wound infection she had after her first open heart surgery) and that leads them to have concerns that Finley's immune system might not be operating up to par.  Which is an issue that other children with CHARGE Syndrome sometimes have as well.  We hope to have some of those tests back today.  That being said, they've called in the Infectious Disease doctors as well (which by the way - how menacing does that specialty sound?  Infectious Disease...definitely not one of my favs).  So Infectious Disease (or ID as I like to refer to them) came by yesterday to look at Finley and basically stood around scratching their heads.  The good news is that this infection is easy to treat, its not antibiotic resistant - but its important to find out why she got it.  And frankly based on all they know right now - there doesn't seem to be a good reason.  These are things we hope to find out the answer to in the coming days.

Finally, Finley had her g-tube changed out yesterday and I told Mike, if there were an award for the quickest g-tube change - the g-tube nurse at Childrens would win it hands down!  Mind you, I've seen this done once before, by the pediatric surgeon in the ER after we had the little accident where Rosey knocked down Finley's IV pole and yanked out her g-tube.  Needless to say, that was the first time it was changed, under those circumstances, so there was blood and clearly discomfort (Finley was not a happy camper) so I expected this to be a similar experience.  Anyway, Terry (the nurse) disconnected Finley's extension set from the pump - at which time I said, "Um - she is on a continuous feed - don't you need to stop the pump?" And she said, "Nah - by the time the pump alarms I will be done" (as a point of reference - the pump alarms if its not connected after like a minute).  So then she proceeded to quickly draw the water out of the g-tube's bubble and with one hand pulled out the old button, wiped away the stomach leakage with the other and then picked up the new button, put it in and inflated all before - you guessed it - the pump alarmed.  If I had blinked I would have missed it.  It was pretty impressive!  I don't think Finley knew what happened.  There was no blood.  No tears.  Nothing.  Crazy.

Nate on the other hand got a special treat.  Grammy picked him up from school yesterday and she took him on an errand she had to run to Buy Buy Baby.  Shortly after Mike and I got home though, we heard from Grammy who was at Toys R'Us?!?  In any event, that Nate, the smooth talker that he is, came home with these:

and the Happy Meal you see him eating in the background.  A huge thanks to Grammy of course for helping us out with Nate last night!

Unfortunately neither Mike nor I will be able to go to the hospital today - so yet again, Grammy is pinch hitting for us.  Mike has training and I have a meeting this afternoon with a new client.  I am really sad about this - I have butterflies in my stomach - its going to be a hard day.  But perhaps Grammy will get the honor of accompanying Finley out of the PICU and back up to 5W where she belongs!  If that happens - it will be a GREAT day because I can tell you - there's no love for the PICU in this house.