I have a Maker, He formed my heart...

Jacob holding tight to Momma's hand

Time for a quick update...I'm so bone tired that I can hardly keep my eyes open - but I know there are many people reading this blog waiting for the latest news.  I apologize if my thoughts seem somewhat scattered tonight.    After Jacob's second surgery, which fixed the kink that had developed in his newly reconstructed archway, the doctor's struggled with his blood pressure and oxygen levels for a few days.  These levels are now relatively stable but his blood pressure tends to shoot up when he gets upset with his nurses - which happens pretty much whenever they poke at him, so quite a lot! The good news about his blood pressure is that Jacob is now managing it himself with no medication, and although it might go up high he is able to bring it down himself shortly after.

By Sunday morning, 3 days post-op, Jacob was ready to have his chest closed up but there was an emergency in the CCCU that bumped his procedure to Monday.  By Sunday evening Jacob had developed a fever, from an infection that still has not been identified.  Jacob responded well to the antibiotics and his fever broke and his white blood cell count returned to a normal range by today (Tuesday). When the fever and infection started Jon and I were quite upset - it seems like every step forward is met with another step backwards.  When I expressed my frustration to the surgeon, Dr C. said to me "I told you in our first conversation that there would be setbacks.  And this is not the last time that Jacob will test your patience!"  Oh dear.  If patience is a virtue than after raising this child I might be a saint :)

So, at 10 AM tomorrow Toronto time the doctors are hoping to close Jacob's chest.  Since his Norwood surgery I have been able to watch my son's heart beat inside his chest - his heart has been covered over with only a clear piece of plastic for the last seven days.  It's such a  humbling experience to be able to see his tiny heart beating hard inside his little body.  The experience gives new meaning to the song "I have a Maker, He formed my heart...Before even time began, my life was in His hands."  I'm pretty sure I will never be able to sing that in church again without crying.

There has still been no decision about Jacob's pacemaker.  The plan is to close his chest, take him off the ventilator and most medications and then disconnect his external pacemaker.  The doctors will then track the beating of Jacob's heart over a period of time and use this information to decide if he needs his pacemaker right now, or a few years down the road.  If Jacob had a normally functioning heart, and then developed Complete Heart Block with a stable heartrate in the 80s-90s than he would likely not need a pacemaker until he was in his teens.  With a single ventricle heart though, the surgeon thinks he needs his pacer now.  There is a team of about 30 doctors with various specialities who will meet to make this decision for Jacob.  Another factor to be considered is that we live in NL - and would need to travel by air ambulance if Jacob needed immediate attention.  The heartbreaking part of this process, for me at least, is that if Jacob needs his pacemaker than his little chest will have to be reopened in the operating room.  He needs to be closed up soon regardless to help reduce his likelihood of infection in his chest.

Jon and I are spending long days by Jacob's bedside - talking, singing, reading and trying to comfort him with our touch whenever possible.  It has been 7 days since I last held my baby, and with each passing hour it gets harder and harder.  I still get the urge to grab him and run away - especially when the nurses start poking him and he is crying so hard but is unable to make a sound because of the tube in his throat.  It will be such a sweet sound to hear his cry again.  Tomorrow marks one month in Ontario for myself and Jon - I wonder how much longer we will be away from home?