Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon


The way is not in the sky. The way is in the heart.

-Buddha




Friday, November 11, 2011

All together..for now.


Xavier was born on a Saturday.  At the start of our CHOP journey his surgeon was going to be Dr. Spray.  We found out when I went into labor that Dr. Spray was going to be on vacation, so Dr. Gaynor was going to be his surgeon.  We were at the best hospital in the world for these surgeries.  I didn't care who fixed his heart, as long as it was fixed.  The tentative date was Thursday, June 2nd.  The morning of May 31st I was sitting on the bridge that connects the CICU and CCU talking with my mom when Nate came out and said there has been a change of plans.  Of course my heart fell to my feet.  Then he told us that they were going to do the Norwood the next day.  Xavier was ready and Dr. Gaynor had an opening.  X would be the first case of the day.  He would leave for his pre-op MRI at 6:00 am.  I had mixed emotions.  I knew he needed this to live, but I was scared.  I kept picturing what they were going to do to him and it broke me into pieces.  Looking back, I am glad they did it on Wednesday.  It was less time to sit around and think.  So we just spent the rest of the day and night with X.  We got a sleep room so that we could spend a few hours with him in the am. We signed Xavier up for some research so they came by the day before for consent.  It was nice to be together...just the three of us.  I tried to remember every second.








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