What a difference a day (and a half) makes

 Today was a pretty good day in the NICU, and it got me thinking: How different each day can really be when you are in and out of the hospital for hours on end with your critically ill child. 

I also noticed, how much better the day is when it is sunny and warm. 

Most days we walk to the hospital. It's a little over a mile and a nice walk through UPENN's campus. Today in Philly it was 55 degrees with the sun shining bright. The sun and temperature instantly made our walk that much more enjoyable and put me in a great mood.  We walked, we laughed, we enjoyed one another's company. 

I've also bought a yoga mat for our room (even though I have two at home already). So this morning, I woke up, did some yoga, had my (iced) coffee and then stepped outside to a day that was disguised as spring. 

And I was here for it.  

We got to the NICU to see a pretty cranky baby girl. But once she was changed and sitting up in mommy's lap, she smiled wide for the first time since her tongue surgery. To see that baby girl smile again...it was the best thing I could ever imagine. 

Her smile didn't last very long, as ENT came in quickly to rescope her. The last time she had a nasal endoscopy they noticed her intense edema, which was blocking her airway. The last time she had a nasal endoscopy, they intubated her a few hours later. 

This time, there was less swelling, no tongue obstruction and her vocal cords looked good. She is healing. 

After these great results, they decided to wean her respiratory to 4 liters of high flow. She is off Heliox and they are going to try to get her to 2 liters soon so she can PO (feed by mouth) again! 

Today was a good day.

I started off this post by saying how different it can be day by day. I said this because not even 40 hours ago, Nikko and I were rushing back to the hospital at 11 pm, after it was brought to our attention Gracie's color was off in a recent photo and she was turning blue in her face. 

As you can imagine, the concern and panic we felt. Is our baby ok? Is she breathing? In distress? Will she need to be reintubated? 

All of our concerns were subsided when we arrived at the hospital to find her pink and peacefully sleeping. All of her stats were good- I even made them recheck her vitals. She had also just gotten a full blood workup that morning with all her numbers being great. 

So why is she turning blue? Well, it turns out she may have poor venous insufficiency due to swelling around her face. Essentially, blood is pumping from her heart to her head, but not emptying back to her heart quickly enough- which is giving her a blue tinge.  She is also superbly pale skinned, so you can see it easier. The thought is that as the swelling continues to subside and she get bigger, she should no longer be turning shades of anything but pink. 

There is a reason why they call this journey the NICU rollercoaster. I'd like to get off this ride now if you don't mind.