Monday, June 20, 2011

June 20, 2011 - Day #16

The doctors ended up respecting my wishes in regards to formula in my breastmilk. I think that they actually agreed that the formula might be too harsh for her tummy. At this point they are giving her 1 ounce of my milk every 4 hours through a nasal gastric (NG) tube. This is far less than she needs so she's also getting total parenteral nutrition (TPN) through an IV. Once we get her calories where they need to be she'll be on breastmilk only.
Today, it was time for them to change out her NG tube. Since I was there to breastfeed, I requested that they leave the tube out while I was there. Suprisingly enough, the doctor agreed! It felt great to have her feed with no tubes or wires coming out of her face :) Unfortunately, since she refuses to take a bottle from the nurses, the tube had to go back in after I left the hospital. I wish I could be there to feed her all the time!
The genetic testing came back today, too. Turns out she had no chromosomal abnormalites - good or bad. Among other things, we were looking to see if she had the FLT 3 gene (very bad) or cells with Trisomy 21 (very good). Since she didn't have any, the course of treatment that we started continues to be her best chance.
Her doctors say she looks great and is a pleasant, beautiful baby. At this point, she continues to do as well as they could hope for this stage of her treatment. They look far more hopeful than they did when they gave us the prognosis less than 2 weeks ago.


  1. i am glad she is doing better. i wish the best for you all. my prayers will go out for you and hope to see riker soon. if you need anything just ask me or amanda. remember we're right here and will do anything to help you through this tough time. i know we just started renting from you and you don't know us all that well yet but just know that all you have to do is ask and we'll do whatever we can to help.

  2. thanks for the words of encouragement Roger. We knew you guys would be a good fit.