Running on Hope and Coffee

Back in the hospital we are.  Regardless of our best efforts, the girls were losing weight.  The cold they have had is back and may have moved to the lungs.  Let me tell you this is hard to take.  We thought we had it right but it is very disappointing to realize that it is beyond our control.  Both Johanne  and  I are having difficulty with this situation.  This being said, I would not turn back time and I would walk the same road again.   It is hard not to become depressed and lost in your own emotions.  Not to sound like some super hero but we can't afford to do this.  We need to focus.  We made this beautiful mess and it is our fault we are here so we must carry-on, which we are doing with a lot of help from some very strong family and friends who are doing what they can and chose not to judge us.  If there are any heroes, they  are our other seven children who are doing everything in their power to maintain a normal life and support mommy and daddy.  They are each very strong,  and we  get a lot of energy from each one of them.

The girls are hooked on NG feeding tubes and the pumps are on overnight for 800 ml of Peptamen.  Those pumps will become 2 more pieces of furniture in our home when they come out of the hospital.  There are talks of moving up the liver biopsy and we will request that g-tubes be installed while they are under surgery.  G-tubes are permanent but reversible.  Unlike NG tubes, they do not need to be taped to their face and changed every 9 days.  We are asked to try to make them each drink 3 x 125 ml of Peptamen orally during the daytime while continuing the purees at meals.  The girls are pretty much refusing to eat: thrush or sore throat because the cause?  Unfortunately, they do not speak...

Johanne does the day shifts while I cover the night shifts.  We need to figure ourselves out for next week as far as the 3 younger boys go.  The idea is that Johanne spends the days at the hospital so I can still continue to work without taking additional leave.  We need to put them somewhere...!  Spending the whole time at the hospital would be too much for them.

We need to be trained with the pumps for the night feedings and we need to make sure our generator is up and ready to run.

So this is it for now, hopefully we will get more answers once the work week resumes on Monday morning for everyone on the floor.