Sunday, November 07, 2010

No News is Good News

Before extubation. Lots of face tape.


The Cin-A-BON belly button. Wow.

For those not accustomed Inpatient Proceedings, not much happens on weekends. No tests, no procedures, mostly just laying around waiting for Monday. So no blog posts since Friday because Lily is hanging out doing well, and we have just been pondering the big decisions this week will likely bring. She was extubated yesterday meaning she didn't need the ventilator anymore, and did just fine. She wore one Utah pink sock during the game which did no good, guess she should have worn both.
Zar and I have are continually discussing our constantly changing and often conflicting feelings about major surgery, palliative care, medical management, etc etc etc, and although it's good and healthy to talk it all out, that's all the good our discussions have done. Tomorrow cardiology will give us their recommendations and options and let us know if they are going to present her at conference on Wednesday. So maybe tomorrow we will have some idea of what is to come, or

we might have nothing decided until Wednesday or beyond.
Lily is still on high flow oxygen but has gone back down a bit on her flow. (good.) She is moving up on her feedings by NJ after her procedure and tolerating it well. (good.) She has terrible veins and is going through IVs like crazy (bad) so hopefully we can get her on full feeds soon and won't have to worry about IV fluids. Until we do surgery. Or not. But she really can't come home without some sort of gastric type surgery (yikes), unless she comes home on NJ feeds, which would be rough, and continuous, and easily pulled out...yikes. There is a lot of think about.
Funny to think how when she was born and did okay I thought SURELY she would be home for Halloween. I can easily see how this hospital stay could stretch on and on and on. Happy 3 week birthday Lily Pie.

6 comments:

Shannon said...

The cinn-a-bon really is great! She is so sweet. I wish that I could do something to ease things for you. You have amazed me with your courage and strength as you have dealt with all of this. You are my hero Erin. You make me want to be a better person. Keeping you in my prayers.

Becky said...

Weekends are the WORST when you're stuck there. UGH. Sorry. Hoping for good answers in the next few days.

TMI Tara said...

She is so big and adorable! Love her cinnabon and Ute socks. Sorry things are slow. Good luck with all these big decisions this week.

Jenny said...

Waiting is never fun...especially when you're waiting for something so important and critical. But it's good to hear that she's making improvements and good to see she's still adorable as ever!:) Praying for the answers you need in order to help you make the decisions you'll be making.

AussieJenn said...

Such a little sweet heart with a very cute belly button! I do hope she is doing better today. She is constantly in my thoughts.

Anonymous said...

That Belly is just so cute! Still praying for all your babies.