Perspective

In the time since my last post I've been doing some thinking.  Through the thoughts, experiences and conversations with those around me over the course of this trip, I've come to the conclusion that life is all about perspective.  My life is, anyways.  Life has not turned out the way that I wanted it, or had pictured it.  But looking at it with all the perspective that Jacob has given me in his short life I know that it is a better, harder, much  more fulfilled version of the life that I had anticipated.  I'm not going to spend the rest of my life feeling blue because my "plans" are unfulfilled - my life would be so empty without Jacob and Georgia in it! And they are both perfect in their own way.

When I was pregnant and Jacob developed Complete Heart Block in utero, our cardiologist held my hand and told me that Jake might not make it to the next checkup.  And he was born at full term, a bouncing 8 lbs 5 oz and with a loud cry.  Yes, he was blue and needed immediate intervention, but he was alive!  At 5 and 6 days old, Jacob had 2 open heart surgeries - the first of which had a 20% likelihood of death during the procedure.  Then after 56 days at SickKids we got to take Jacob home and spend a wonderful summer with him and our families.  Jacob has now had 3 open heart surgeries, 1 pacemaker implantation surgery, 1 heart cath and more tests/scans and bloodwork than I could keep track of.  Jacob is beautiful, strong and so HAPPY.  The way he views life is inspirational.

Today marks 2 weeks post-Glenn operation for Jacob.  Tomorrow he will be 6 months old.  2 days after that we will be home in Newfoundland.  Sunday is also my Father's birthday, so that's a nice birthday present right there huh, Dad?   There is so much to celebrate!

Jacob's Glenn operation was successful, and in the words of the surgeon "uneventful" and we are so thankful for that.  The repair to his Left Pulmonary Artery was not as successful, unfortunately.  After more tests: a CT scan, x-rays and bloodwork we have been cleared to bring Jacob home but with the knowledge that he may need to return to SickKids for intervention in as little as a month.  Or it could be six months.  Or a year.  Or until his final stage Norwood procedure.  There is no way of knowing.  The doctor's here are fairly comfortable with Jacob coming home, but insist that he be watched very closely when we are home.

So we are bringing our Superbaby home again, I am excited to get back into the routine of our crazy life.  Jacob is coming home with a heart that is much stronger and more stable than it was when we came to Toronto.  His little heart is working half as hard as it was before his Glenn procedure.  This complication with his LPA means that we are coming home with the knowledge that we need to be ready to go again at moment's notice.  That is all the more reason to live a Carpe Diem lifestyle with each day we are given.  I believe that our God has this all under control.

Jacob's improved heart function has already made noticeable improvements in his life.  My ever-vomiting child has only vomited twice since his Glenn procedure,and has been having typical baby spitups instead of full out projectile vomits, and this is because of the improved circulation in his body.  Jacob has also had no blood in his stool since before the Glenn, even though trace amounts of dairy are in the food that I consume daily.  I'm wondering if this is also related to the Glenn, but that's a conversation to have with the cardiologist and dietitian when we get home.

While we were here Jacob's cardiologist, the surgeon and several others on his medical team have commented on his size.  They think he's big! It blows my mind a little, because he looks small to me...but on the day of his post-op checkup at SickKids I took this picture of him with one of our favourite members of Jake's team - the Single Ventricle Nurse Practitioner, Jenny.  In this picture he looks big.  My little six month old...maybe I should reward him with some icing after he eats his cereal tomorrow? :)