Monday, April 28, 2014

Pre-op (day 2)

We got to the hospital a little after 7, and signed in what I call "home base".  I guess the room is called Cardiology pre-op, but you dont actually do any pre-op stuff in there. There's a team of coordinators behind a lot of glass.   They get each family on their own schedule, getting all of the necessary tests and consults done as quickly as possible.  "Home base" runs like a well oiled machine.  You always return to them after each test, until they tell you you're all finished up.
First, they sent us to Radiology for a chest Xray.   Next, Cecilia had her height, weight, blood pressure, and oxygen saturation checked.   Then, she had an EKG.    We went down a floor to get labs done.  That was pretty crowded, but the wait wasnt so bad.  Cecilia was very  upset after this, until her Child Life friend, Liz came back to play.  Liz played with Cecilia several times throughout the day.  At this particular time, she brought Cecilia stickers, and Cecilia was instantly happy again.  Cecilia was next examined by the NP.  Afterwards, we went over the cardiac cath consent with a Cardiology Fellow.   And lastly we touched base with Cecilia's Cardiologist.  
After we left, we had lunch.  We stopped by the park and had a blast until Cecilia fell and scraped her face. :(
The best part of the day was when Elizabeth arrived.  Elizabeth is an important part of our heart journey and we are so grateful that she came all this way to stay by our side for Cecilia's cath tomorrow,  and her open heart surgery on  Thursday.  Elizabeth used to take care of Cecilia at the bedside.  She helped me hold Cecilia for the very first time, a moment I will never forget.  Even when she didnt take care of Cecilia, she would catch up with me before or after her shift.  After we left that hospital, she visited us in the new one.  She still loved Cecilia.  She supported and understood our decision.  She visits us at home often.  She is family to Cecilia, and we can't imagine our journey without her love, because it definitely was the bright spot in a lot of bad times. 

Sunday, April 27, 2014

Arrived (day 1)

It's been a long road to get to the Fontan, so not sure how we got here so fast.  But, we arrived. 
Somehow I'm holding it together.  That may not have been true the day before. 
It's very hard to say goodbye to my other daughters and my husband when I don't know how long we'll be gone.  But, this is the choice we made because we believe it's what Cecilia deserves. 
Onto the happy stuff:  Cecilia and I had some fun together today.  She got to do a couple of her favorite things, plus discover new favorites.  Chasing ducks happens to be one of those new favorites. 
Tomorrow is pre-op and Elizabeth arrives! 
Some pictures from today: