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



Tuesday, February 14, 2012

Going to CHOP is like going home..

Happy Valentine's Day...Happy Congenital Heart Defect Awareness Day.  What a difference a year makes!!  February of 2011 we were in a bad place.  And we were visiting CHOP for the first time.  I have never felt so small in all my life.  There we were...at 7 am..driving up to this HUGE hospital..We had no idea what was about to happen.  I wish I could go back to my pregnant self and tell her..its all going to be okay.  You are in the right place.  I guess as a parent that is our struggle..am I doing the right thing for my child.  We had already been to Columbia..and although I am sure they are great at what they do..It just didn't fit for us.  What if that happened again...I can't believe this is happening.  We sat in the waiting area at the SDU. Finally this sweet lady called my name to register me.  She shook my hand and said welcome..I remember thinking "that was nice".  She did all the usual stuff, gave me a patient bracelet and said "we are all here to help you, please let me know what I can do". That was the second that I know..we were home.

We went back to CHOP yesterday.  Xavier is part of a program that follows kids with single ventricle and monitors their development and their well being.  Now we know that hospital like the back of our hands.  It was a different feeling walking in there yesterday.  We met with hematology and then cardiology.  To get to the cardiac center from hematology, you have to walk past the SDU.  My heart just broke for all the people waiting, I just wanted to run up to them and say.."It will be ok".

We saw lots of familiar faces yesterday.  They all had wonderful things to say about X.  They were happy with how well he was doing.  Dr. Wenovsky isn't overly worried about his leak.  He feels like the ECHO makes the leak look worse then it is.  He used the analogy of putting your thumb over a garden hose..a small stream of water squirts out around you finger.  It isn't much water, but it makes a loud noise.  To be sure, we are getting an MRI in April.  This was something we were going to have to do to monitor his brain, so they will just do his heart as well.  That will give him a number to put with the leak.  If is becomes a problem them will fix it during his next surgery.  He said he is not worried about any of this.  We are staying on the Lovenox for now.  It was an overall great appointment.  Speech is happy,  his fine motor skills have caught up, we are just behind in gross motor and we knew that.  We have someone who comes to the house once a week to work on that.

We got to see some old friend yesterday and show Xavier off.  I just love it when people stop us to tell us how cute he is.  A woman actually ran after me as I was taking him back to get his vital's and said he is just beautiful!!  We are so blessed.  Blessed to have each other, blessed to have so much support from all of you, blessed to have our heart community friends, blessed to have CHOP!  Going to CHOP for us now is like getting a recharged.  They care about all of us.  Every specialist that see us asked how are you all doing..not just X.  His interstage case manager actually came and spent an hour visiting with us.  She has become a friend and someone that I still call with questions.  His social worker came to visit and she is so helpful with issues.  She just wants what is best for all of us.  CHOP is amazing with treating children, but they also treat the family.  It is there goal to make sure we all live happy, healthy lives.  Going to CHOP is really like going HOME.


This is Xavier's cardiologist at CHOP, Dr. Gil Wernovsky.  He is kinda a big deal!!


A huge part of our Heart Family..Tommy, Stacie and Kellen Jackley.  They had a clinic visit as well.  We met at CHOP in June and have been dear friends every since.  We are looking forward to the warmer months so we can hang out and do fun things!!  Love you guys!!


Amazing things happened in PA yesterday..newborn screening will now include screening for CHD's including pulse ox screening..Way to go PA!!

During our visit yesterday we were interviewed by the Philadelphia Inquirer.  They are doing an article for CHD Awareness.  They took tons of pictures of X.  We will let everyone know when it is going to run.  Happy Heart Day everyone!  Please tell someone Xavier's story today.

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