I am so blessed.

Today was Jake's latest sedated echo...and the report was good.  Jake is fine for the time being, with no further narrowing of his left pulmonary artery and nothing else to cause concern.  In 3 weeks we go back for another sedated echo just days before Christmas.  Leading up to the appointment this morning my stomach was all nervous, butterflies and sleep interruptions.  My fear was that the LPA would be narrowed and we would be told that we had to spend Christmas in Toronto.  But thankfully...it was only irrational fear inside my head.  I am fairly confident that we are spending Christmas at home.

Our biggest battle at the moment is feeding.  Jake is eating solids well - meats, veggies, fruits and cereals.  I've discovered that if I combine anything with carrot he will eat it.  That boy loves him some carrots :) I get a lot of satisfaction from the process of making baby food for him.  I often feel that I am unable to do anything to help Jake because he is so complex...but I can make wholesome, natural food for him to eat.  That's something, at least.  I can't seem to make any progress with Jake's liquid feeding - there has been no progression for months now.  I bought a special bottle for babies with oral feeding issues, and at it's first use today Jake drank a pitiful 4 mls.  I have no idea which way to go with getting him to drink.  We will soon be facing the issue of a permanent feeding tube in his stomach - the G tube.  I want so badly to spare Jake another surgery but I don't have any idea how to prevent it.  One day at a time, one day at a time.  Maybe we'll get a miracle.  On the positive side, and it is a HUGE positive - Jon and I now sleep through the night as Jake will tolerate larger feeds in the day to make up for omitting the middle of the night feed.   The last feed of Jake's day is at midnight, so we are usually in bed by 1 am.  And it's lovely...so very lovely :)

With the cold and flu season also comes RSV season (Respitory Syncytial Virus) - a very common infection of the lungs and breathing passages.  For a baby with a heart like Jake's this very common and easily treated virus could be fatal.  Fatal.  My heart stopped for a beat when our cardiologist told me this.  So beginning in December Jake will be recieving Synagis shots each month, which contain antibodies to help him fight the RSV virus if he gets it.  It's not a vaccination, because there is no vaccination for RSV, but it will help in the event that Jake gets infected.  The five months worth of shots will cost $35,000 just for Jacob.  Seriously, I kid you not.  I am so thankful for our Canadian healthcare system because Jon and I do not have $35,000 to give away!  Only babies who meet strict criteria receive these shots, and heart babies are among them.

We had our Christmas pictures done with Pretty Pictures...look how beautiful my children are.  I am so blessed.  Thank you, Lord!

Baby Sara is still at SickKids, but I just got a message from Danielle saying that she moved from Cardiac Critical Care to 4D today.  Way to go, Superbaby Sara!  Please continue to pray for Sara and her parents.  It's a long, hard road that we know all too well.  Sara now has a blog at www.sarasheartofgold.wordpress.com , please have a visit to her site too!