Chicks dig scars!

When I sit down to update this blog the words usually flow easily from my fingers...but I've sat down to write a new post several times since leaving the Janeway yesterday and this is the first time I've managed more than 3 words.  It's not that there is bad news - that's not the case, at least not yet.  It's that there is no news.  How do you write a update with nothing to tell?

All I can say for certain is that getting Jake his G-tube is more complicated than we anticipated, and it's frustrating because this is supposed to be the "simple" surgery.  Jake's pacemaker is blocking the path to his stomach, and while there are options for getting around the pacer, none of them are simple options.  Uncomplicated g tube insertion is essentially done with a needle and a very small wound.  In Jake's case we are looking at having him opened up for the procedure, regardless of the route that they take.  The option that I can't get out of my head is the possibility of the surgeon physically moving Jake's stomach to allow for the g tube.  It's actually quite silly that this bothers me given that Jake's heart has been totally reconstructed since his birth - with parts added and parts taken away - but I can't seem to "stomach" this g tube option.  Regardless, Jake is going to a upper GI test at the end of the month and it will be early March before we get an answer from the surgeon.  It figures that when I have myself in a good place mentally to prepare for the g tube, we now don't even know if he can safely have one.  I have to find a way to stop dwelling on it until then, or I'll drive myself nuts.  Once again a lesson in patience from baby Jake. 

Check out these images that were taken while we were in the waiting room yesterday...My boy is beautiful :) 

 Congenital Heart Disease Warrior Jake

Chicks Dig Scars! 

Thanks to Your Vinyl Destination for designing this very fitting shirt!

Jake has been doing well with solids for the last couple of weeks - eating up to 6 tablespoons of food on his best days, but typically 2-3 tablespoons on an average day.  He has discovered a love of puffs - and has eaten up to 25 in one sitting! His little lips munching on that puff is just the sweetest thing you ever did see.  Sweet jaws.  But, no liquids - most days if I can get 5 ml of formula into him that's a good day.  And it's not that he can't do it - it's that he won't do it.  Oh the frustration!

In better news, baby Sara is out of cardiac critical care and doing well with her parents on 4D at SickKids! Her update can be read at www.sarasheartofgold.wordpress.com .  Way to go Super Sara!

Today I had a friend tell me that she doesn't know how I keep it all together, and that if the situations were reversed she may not have made the same decision we did when were offered the option of terminating the pregnancy.  This much I know for sure - my life without Jake in it would not be much of a life at all compared to one I am living now.  It's not easy, and sometimes I just want to be that family that seems to have everything come so easily, but I wouldn't want any of it without Jake.  I've had a day of feeling fustrated and down, but I'm choosing to end the day holding Jake close as I do his late feed and thank God for the struggle - because the struggle brought Jake to me and given the choice, I'd never give that struggle to any one else - Jake is my perfect baby, and I am his perfectly imperfect Mom.