Thirty

I had a GREAT birthday today. Thank you for the love!!

ruby's nurse made this for me 

Mark made crepes with nutella and strawberries..mmmm... We went for a walk (well, I walk, mark skates and the girls ride bikes) around the neighborhood. I spent the afternoon with Ruby and then Mark and I went back tonight while Liz watched the girls (and sadly Janie threw up while we were gone :(   Oh how I wish I could snuggle up and sleep next to my Ruby Jane and Siri!  I am very much looking forward to when Siri and Jane can meet their sister. 17 days old and they've still never seen her in real life.



While I was at the hospital this afternoon Dr.Grimmer came to visit. We unwrapped Ruby's gauze turban so he could see the tumor. His only news was that Ruby has stumped every doctor! ...and that we are still waiting to hear back from the pathologist. It may be later this week (as opposed to today or tomorrow like we thought).

The long story short is that it will be best if she can wait to have surgery. Ideally we will take her home for 6 months or so until she can grow. She may have to have a carbed instead of a carseat, we will have to give her her heart medication and know how to check her heart for signs of SVT, and will care for and change the dressing on her tumor 2x/day. But that will be so much better than having her live at the hospital!!!
If she's older for surgery she will have more blood volume and more neck muscle.  I learned 2 things today that I didn't realize before.
1-during her biopsy she lost 25% of her blood volume (I thought it was 15%...still a lot either way)
2-they will have to remove most (if not all?) of her neck muscle because the tumor has grown into it. But if they wait until she is older she will most likely have more muscle that can be preserved. I haven't yet asked what the consequences and solutions are when take out that much of her neck muscle.

As for now we are trying hard to get her to take all her feedings by mouth (either nursing or bottle). She can't go home until she can do this. Its hard because they have her eat 2oz every 3 hours. No exceptions. If she doesn't eat by mouth they put it in her ng tube. Whereas if she were home with me, I'd nurse her every 3 hours (sometimes babies eat more one time and less another but it all evens out) and I would let her sleep as long as she wants at night. In turn I think she'd eat more during the day and still gain weight....but we have to do what the hospital says.

Thank you for bearing the burden with us during these crazy weeks of waiting. I have felt so much comfort and love.We feel very positive about things and are optimistic that whatever is decided, Ruby will be fine.