The past two days have been discouraging and I have struggled to put my feelings into words. We finally had out baby 'home' and were a family again. 30 hours later we not only went back to the hospital, but back to PICU.
Hope was poked 10 times before they got a successful IV in her head. Blood is now drawn with a 5 inch needle from her femoral vein in her leg. I long to be numb when this happens but can't turn off my heart. I'm exhausted by the end of each day and longing for Hope to get a break from the painful pokes.
There are still no answers for Hope. She continues to not tolerate feeds in her stomach and is now being fed into her intestine through an nj tube. Her belly is now 46.5cm and yet she's too dehydrated to up her diuretics.
I fear she'll be here until her next surgery and fear that surgery will be delayed. I long for answers, restful sleep and my family to be together.
We still need our miracle. Please pray for healing in Hope's body and wisdom for her doctors. Please also pray for Shawn and me as we work to make this crazy life possible for our family.