Quickly catching all of my non-facebook followers up on some last minute details before tomorrow…. and adding a few that you might have missed due to absurd algorithms for business pages even if you do follow us over there!

Lucie is all ready to go swimming with grandma, she says the heck with the rest of this nonsense!

Monday we toured the NICU, Intermediate Care Nursery, and met with the “funny-situation” coordinator nurse.  That’s what I’ve taken to calling her since she does a lot more than just palliative care, including cases like ours that have so many odd twists and turns.  She seems pretty good at rolling with the punches and acting calm when strange things come up.  She is also really good at organizing things behind the scenes and making sure that everyone knows exactly what we want.  (And when needed, just telling people that we are going to do it a certain way!).   She also happens to be Catholic and is very understanding of some of our less expected requests.   She was going to even personally call the priest who is coming tomorrow to give him instructions so we don’t have to!

We also heard for the first time that this Intermediate Care Nursery is actually something that could maybe happen for Siena, at least in the short term.  If she doesn’t need a ventilator (even if she does need oxygen with/without a CPAP), she may be able to stay onsite in the ISCU where they have fully private rooms with pull out beds for parents.   The NICU is much less private but if thats were we go, we know they will take good care of us.  We actually met with the child life specialist and chatted about the kids and she said no matter what happens tomorrow she can be there to talk to the kids and answer their questions as needed.

Siena was playing during her BPP and NST.  We *almost* got an ultrasound picture of her face, but we were able to watch her playing with her arm for a bit instead.

Hand by her face.  So hard to see with no fluid, but these are some of the better pictures we have gotten.

Monday we also got a special delivery in the mail from my friend Deanna who made us a collection of #SienaStrong buttons.

Her daughter, Lilly put a heart on the back of each button for Siena!!

Last week, I asked my readers to help spread the word about Siena and to share her story.  Last week on Facebook, over 10,000 people saw our posts (a normal week is a few hundred) and that was seriously thanks to all of your generosity in asking for prayers from your friends and family.  We can’t thank you enough and we know that those prayers will help sustain us no matter what happens next!

Monday at our appointment, Tim mentioned that his Knights of Columbus rosary had gone missing.  He was obviously kind of bummed about this, but was hoping he had forgotten it in another coat and it wasn’t gone for good.   Tuesday morning, as I was repacking the diaper bag, I found it in the bottom!  No idea how or when it got there, but I know we were both glad it was found.

Cake from a box, half naked toddler…story of my life these days!