10/27/10 - 2:30 pm

Today is Riley's due date. 

We started our morning off at Northside loving on Riley and waiting to hear about her transport to Egleston.  Finally we got the call that they were on their way and would be to us in about 45 minutes.  They arrived looking like the SWAT version of hospital transportation people.  Mark, David, Julie & Jason got Riley untethered from her cords and wires and moved into a warm & cozy isolete for her big move.  Today, after 20 days in Northside, Riley would be going outside for the first time.  I got to ride along in the ambulance while Josh gathered all of the stuff we'd accumulated during our stay in N4 so that he could drive over and meet us at Egleston.

The ride over went nice and smooth ... Riley slept through the whole thing!  We arrived at the hospital and made our way to the Cardiac Intensive Care Unit (CICU) where Riley will be staying during her time here at Egleston.  I left her to the care of her nurses and went down to Admissions where I had to sign some new paperwork. I've lost count of how many forms I have signed in the last few weeks.  We had to sit around and wait while they got Riley settled in.  This place is Huge!  There are so many facilities for the families ... work out room, library, office centers, you name it.  As nice as Egleston is, and I'm sure we'll be happy here when heart surgery time comes around, I think Josh & I are both already missing the comfort of the familiarity of Northside SCN.  After 3 weeks, we know exactly what to do there.  We know the doctors that have been taking care of our girl.  We know the nurses and their routines.  We know where to find everything and had settled in nicely to our semi-private space there.  Here, we are strangers in a strange land.  While a lot of things are the same, the overall feel is completely foreign.

We meet with Amar, who will be on the surgical team with Dr. Wulkan tomorrow.  Amar went through the process of inserting the g-tube, and what it will look on her skin.  He explained the Fundiflication (not sure if I spelled that correctly or not).  Basically what will happen is that they will actually fold over the top part of Riley's stomach and wrap it around the bottom of her esophogus to create a tighter area which will help to reduce the reflux.  This will be done lapriscopically (again, not sure if the spelling is correct), so Riley will only have 3 tiny incisions.  They feel that infants actually heal faster than adults ... I can only hope that is accurate information.  The surgery should take about 1 hour and 15 minutes for both procedures.  We are still not sure what time the surgery will be, but have been assured that we will know by the end of the day.

Right now we are waiting again to be able to see Riley. When ever a surgical patient is being transported, parents must vacate the CICU.  Again that is one the downsides here.  They close the CICU during shift changes, and Zoey won't be able to visit her sister here either