Day 5 (Post Norwood day 2)

Today was another good day.  The plan for the entire day was to ween Stella's cardiac support medications so that when they close her chest, they have medicines they can go back to that can help her without going to extreme doses. The goal was to stop the Vasopressin and to cut the Epinephrine by a little over 1/3.  Stella said challenge accepted!  She hit her goals in less than 10 hours while maintaining relatively steady cardiac values.  We are hoping for another peaceful night for our little heart warrior as they continue to slowly take enough fluid off her body so that they can close her chest (milestone # 2), hopefully on Monday.

We also got to see her little eyes for a brief moment again today.  She responded well to not being on the paralytic, so she has been off of it all day.  It is nice to see our baby girl be able to move, if ever so slightly.  They are keeping her comfortable with pain medication and knowing that she is able to move and provide even more information to the care team here (by how her face and body reacts to stimuli) is another valuable piece of the puzzle.

We cannot say enough about how amazing and kind all of the nurses and doctors are.  As some of you know, we went to Boston Children's Hospital for a second opinion (not to confirm the diagnosis, we knew what it was) to make sure we were making the best decisions about where to treat Stella.  At the end of that trip, the Lord made it abundantly clear that St. Louis Children's was the best place for our little girl's care and every minute of every day we are here, the people keeping our little girl alive continue to reaffirm our decision. The nurses from the day she was born even stop in to tell us they are praying for Stella - God shows Himself in so many places here. 

Some have asked about visitation.  We appreciate the amount of love, support and prayers that we have received and are still receiving.  While Stella would love to meet those who have been helping us through this difficult time, the world is full of scary germs that her body cannot handle right now, so visitation is limited to family only.

Please continue to keep our little girl in your prayers.  They have started to prepare us for our next milestone (when they close her chest) and the fact that we may have some rocky days ahead.

Finally, one of the highlights of Kate's day was when a nurse put a little bow on our girl...