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.


  1. Praise God for Hope's amazing progress! I have been following your updates and am just in awe of the healing work that God is doing in her little body! Oh how I pray that this disease would be conquered and that Jesus would reveal His amazing plan for Hope! May Christ continue to be your Refuge. May you feel His presence —even now—as your unfailing Savior, you ever-present help in time of need. I pray that you would know His sufficient grace and stamina to be more than conquers each day. That His peace and love would brim over in your hearts. That His presence would be tangible even in your hospital room today. That His Holy Spirit would fill you with a supernatural comfort and joy that would astound everyone you meet, like it has astounded me. That His mercies would be new each and every morning. And that our Sovereign Savior would work all of this for your good and His glory… These are promises of God that will never fail.

    The same God who loved you so much that He gave His only Son to die and be raised for you, is the SAME God that will carry you this this terrible storm. As hard as this trial is... we pray that you would continue to open up your heart to Jesus and let His loving arms enfold you…

    I've never met you... but I believe in a God of miracles. I believe in the power of prayer. Therefore I commit to praying fervently for healing, peace, comfort and eternal hope.

    Please know that we care deeply for you... we are crying out to Jesus on your family’s behalf...

    With the deepest love,

  2. Just wanted to thank you for documenting her journey. I am a pharmacy student and with an interest in pediatrics I have learned so much about how things are "in real life" from your blog and Facebook page, and wanted you to know that by doing this you are not just sharing your story but also shaping the next generation of healthcare professionals. I am very happy to see that Hope is doing well, and it makes me ecstatic to see parents who are so involved and caring despite the hurdles. Thank You.