Friday, 14 December 2012


I am completely numb today.  Hope had a horrible night yesterday and today was not full of great news.  Her lungs are very wet once again and the doctors can not figure out why this continues to happen.  They're pretty sure that although the motility medication is pushing Hope's feeds through, she's not absorbing them properly.  We have a GI issue that remains undiagnosed and no one has a clue how to treat it.  As well we have wet lungs and a low grade fever that won't go away.  As a result, we are no longer just waiting for Hope to eat.

After 3 throw up sessions last night, Hope's feeds were cut back and the TPN was re-started.  I have no idea how she'll ever be able to come off it.  Also, the wet lungs have put Hope back on oxygen!  Thankfully the oxygen is no longer blended, one positive step.

I felt almost no emotion as the doctors were talking to me today.  I just expect these things to happen now and never truly believe we'll get to go home.  It's a way to protect myself, but is still not healthy.  On the other hand, God has reminded us once again that our community is carrying us through.  I am speechless tonight as I think about how wonderful people have been to our family.  I am challenged to be a better person when I see how others step up to walk beside us through this journey.  We finish today discouraged, yet blessed.


  1. I pray that the God of endurance and encouragement would fill your hearts with joy and peace as you trust in Him and that you would overflow with hope by the power of the Holy Spirit. May He grant you restful, restorative and long sleep tonight and spread wings of healing over Hope.

  2. Love you Amy! Praying for you! I understand this numb feeling from my own journey with health and I do pray and lift you up that God will guard your heart and you don't have to be so strong but He will carry you. I continue to speak life and peace and wholeness over Hope's body! The Presence of God be with you all.

  3. Can't begin to imagine what you are all going through but just want you to know though we do not know you personally we do know some of your great friends that walk close beside you. Hope and your family have been a reminder of how we all go but for the grace of God and your little girl has brought so many of us together in a common goal. To pray for a miracle for Hope, healing and strength for you all. Remembering you daily and praying for blessings.