Saturday, August 9, 2014


Hope today after getting her hair done.
I know I totally left everyone hanging.  I have been updating Facebook  during the last couple of weeks, but I have completely left out updating this blog.  I am going to give a brief timeline of events to catch everyone up and include some pictures as well.

July 25th - Hope is in the OR at 8:21 pm waiting for her new heart to arrive

July 26th - Hope's new heart arrives at 12:21 am

July 26th - We get to see Hope for a few minutes at 9:06 am.  They have not been able to regulate her blood pressure and we were told to go get some sleep.

July 26th - Hope coded and Dr. Stewart had to manually compress her heart for over an hour.  She was taken back to the OR at 10:39 am and she is definitely going to be on ECMO (life support).

July 26th - We finally get to see Hope again at 3:39 pm.  She is super swollen and on ECMO.  They are pretty sure her brain has been affected as she arrested for over an hour.

July 27th - Hope has continuous seizure activity.  Neurology tells us this is definitely a sign of moderate to severe brain damage.

July 27th - Hope starts dialysis to give her kidneys a rest.

July 28th - Community prayers begin at 9:00 pm EST.  They definitely work!!!

July 29th - Dr. Stewart cleans out her chest, puts in a pacer, and clamps off the ECMO cannula from her right atrium.

July 30th - Everyone feels like the heart is working perfectly.  They are still scaring us with head issues.  Mommy paints princesses toenails.

July 31st - ECMO settings continue to be lowered and Hope is holding her own without any issues. Hope also gets some cool new boots.

August 1st - Hope is off life support!

August 2nd - Hope is doing pretty good.  Still some blood pressure issues, but not bad.

August 3rd - Hope is extremely sensitive to stimulus so dad and mom are sleeping at home.

August 4th - Hope's chest is closed!

August 5th - Hope moves and is starting to wake up more often.  Pacer is turned off.

August 6th - Hope is waking up and opening her eyes.  She is able to move everything other than her left arm on command.

August 7th - Hope is stable and not much planned for the day.

August 8th - They are working on vent settings.