Tuesday, September 30, 2014

Facebook Updates

I started a Facebook Page


I have been updating that a lot more regularly.

Please follow our journey there.  I will try to update this blog with the past few weeks, but for now I have been updating Facebook.

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.

Thursday, July 24, 2014

New Heart Prayers

Hope May Have A Heart

Dr. Stewart says preliminary reports are good.  We will know more about 2am then possible OR at 6am with transplant sometime later in the morning.  They will have to start trying to get through scar tissue before they even see the donor heart, so please pray that it is a perfect heart.

I know I am asking for a lot of prayers, but please say extra prayers for the donor family.  They are grieving a profound loss and through it have made the ultimate gift.  We will not know who they are unless they want to know our family, but I have been writing to them since the day Hope was listed.  I pray they will find peace in knowing their heart is beating in our beautiful daughter.  We will cherish this heart forever and pray for the family daily.

I will update as often as possible.  We will know more in the early morning hours, but nothing certain until later tomorrow.

Please continue to be in prayer.