It's like a knife went through my heart!

This will be probably one of the most difficult blogs that I will have to write. A part of me is numb, the other part of my mind is going 100mph and trying to bring Hope to this situation. However, since they could not isolate where the bleed came from the hematologist highly suspects her bone marrow is not working anymore and even the transfusions will only last for 3 weeks at a time. When he told me this it was like a knife went through my heart. He told me like I knew this was a commonly known fact and I should have known this and in some ways that was even more difficult for me to take. Kourtney was in the room sleeping so I was the only one who absorbed this information. We also learned that Kourtney's nutritional status is not good. She is not making use of all the feed we are giving her. Not sure why, but once again it seems like Kourtney's body is so overwhelmed that she is starting to shutdown. At this point it will be "wait and see" how Kourtney handles this transfusion. If she holds on to it then we will have more Hope that this was an acute blip with EB. If she doesn't hold on to it then it will be clear in our minds that we will have many decisions to make regarding her care. This was a blindside for me and not something I was prepared for. Please pray for strength wisdom and a whole lot of HOPE. WE are exhausted, scared, but also feel that although we are walking through the dark valley we know and feel that it is so out of our realm of control. Thanks for your prayers!