Day 4: Edmonton

Monday, February 18th

Every morning we wake up and a feeling of anxiousness overwhelms us.  It's just an odd feeling, not having your baby with you... not quite natural.  We have started a morning routine that gets us out of our suite pretty early so we can spend the most amount of time with her.

When we arrived this morning we found Ellie still on the respirator.  In fact the lowered rates that they had begun last night had been reversed.  From the morning X-ray they found out that a lot of fluid had built up in her lungs over night due to her congestive heart failure.  Her heart was still incredibly fragile and they didn't want her to have to work too hard to breath yet.

Since the removal of the epinephrine, Ellie's heart rate had decreased to under 60 beats/min... which is crazy low.  After much debate amongst the professionals, they decided that they would give her a dose of a drug that is supposed to increase her heart rate drastically.  They then proceeded to hook her up to an ECG to record the results.  The good news is that her heart responded "normally".  One small success. 
 
After the new drugs were administered we met the "Heart Failure Specialist".  All I could think of was "worst title ever"... was he serious? It was around this time that I started to feel really small and incredibly overwhelmed.  I had to leave.  With my small knowledge of medical terms and functions, I was understanding a little too much of the doctor "speak" around us.  The full weight of the situation fell swiftly on my head and I just had to escape.  I forced Dan to go for walk/lunch to try and process everything, which seems to be a never ending task.

While we were gone, the cardiac physicians conducted another ECHO which lasted a good hour. 

In the afternoon our wonderful nurse put in a feeding tube that goes in through the nose and down into her intestine.  This way there is no risk of vomiting and yet she gets all of the benefits of the nutrients.  Her food is at a rate of 2 mL/hr, not a lot but at least it's a start.  We were also informed that she was taken off of the ECMO alert.  What a relief! I'm hoping with this news that the constant fear of her dying decreases.

At this point she is on two  powerful heart medications.  All of her vitals seem to be stable for now.  After this roller coaster of a day we were exhausted and ready for bed.