Saturday, September 19, 2009

Sort of normal today

Today seemed sort of like a normal day.  Of course we visited Hope at the hospital which was wonderful, but then decided to take some time and go to Anthony's birthday party.  It has been a few weeks since we have done anything that seems 'normal' that it was kind of strange. 

Some good news from the visit today...Hope is finally going to be able to eat.  I have asked several times if I should pump and was basically told that she would not be able to eat until after her surgery.  I got to the hospital today and they asked if I had been pumping.  I have pumped a few times and stored it in the freezer, but it really hasn't been too much.  I was kind of thinking that I might try to stop my breast milk from coming in because I didn't want to throw it away.  I am glad I saved it and I found out that I can pump during the day at the Reinberger Family Center.  It is a great place where we take the boys and let them play.  Now I can go there and pump too.

Nicole (Hope's nurse) told me that the nephrology team came through on rounds today to discuss Hope's kidneys.  I guess both of them are pretty small...I thought only the left one was small, but from what I learned they are both pretty small.  The nephrology team will be making rounds on Monday at 8:00am along with the cardiology team to discuss how the lower kidney function may impact the outcome of Hope's surgery.  I plan to be there for rounds on Monday so I can hear everything the teams have to say about her kidneys and the surgery.  Maybe they will know more about a date for the surgery.  So far they don't believe her kidney function will impact the surgery because the labs they have been running (BUN and Creatinine) show that the kidneys are clearing out the blood.

John and Mia came by to visit and brought Hope some onesies and a cute blanket.  It was great seeing them and having people visit with Hope.  I know it is hard for everyone to see her in the oxygen tent, but I know she hears the voices and knows that everyone is visiting her.

Jerry and I really appreciate all of the support we have received from everyone.  We know how stressful this is for our family and understand how stressful it is for everyone else.  We truly hope that everyone understands that we may be short sometimes and our stress may get out of control.  For anyone that has been on the receiving end of our stress...we are truly sorry.  We don't mean to take our stress out on anyone around us...especially with as supportive and helpful everyone has been.


  1. Girl, you are going through a lot right now with your precious little warrior, I am sure everyone understands if you're a little short here and there. Still praying hard for all of you, and especially Hope. Such a fitting name!!
    ~Mary (BBC Heart Board)

  2. I'm so glad to read that Hope is progressing in the right direction. As for the stress, please there's no need to apologize; this is why we're here for, many of us (from BBC Heart Board) have been there. It's inspiring that you're able to write about your journey so soon, it takes a lot of courage. I'm keeping you in my prayers.