Our friends the Dekorne’s are still at the hospital with their baby girl. The EEG and the MRI look good. Here is the latest:
Kaiya is getting nutrition now through the NJ tube, so pray that her system will correctly process the food. They wonder if she had a little stroke, which is causing the eye problems. Please continue to pray for that left eye...Also for her breathing, that as they think about taking her off the ventilator in a few days-her body will be able to respirate properly.(this won't be too soon...but proactive prayer, right?) And of course very importantly, the fluid on her brain.
Their circumstances are different from ours but all tests have been the same and it hits too close to home for me. I tossed and turned last night thinking of them. I can feel the hospital; smell that weird hospital smell and hospital food. I know what it feels like to have tons of doctors circling around you and your baby trying to decide what to do. I know what it feels like to kiss your baby goodbye as they wheel them off to yet another test. I know what it feels like to sit and wait for each test, the EEGs, MRIs, blood work, on and on. Seeing your baby hooked up to more machines with tubes and wires than you ever imagined could be put on such a little body.
All of that boils down to two things: waiting and waiting to see if they can fix my baby.
For most of my life when someone is sick, we went to doctor or hospital. Then the doctor would prescribe some sort of treatment and we got better. Then came Brayden; we sit in countless doctor offices and hospitals. Lots of tests and tons of waiting (as I mentioned before, waiting in a hospital is like dog years, one day feels like seven).
So many times I sit there crying in my head “Fix my baby! I don’t care what we need to do, just tell us and we will do it. Just fix my baby!”
Crying out to God; “Fix my baby!”
It is such a powerless feeling, when you have to wait and see what will happen. We always have to wait for the test results to come in. I can remember each conversation with each doctor after each test. Most of them list the things wrong but we always need to wait and see what will happen as he grows. Brayden’s wait and see plan pretty much entails his entire life. Will he see? Wait and see. Will he sit up? Wait and see. Will he ever be off the feeding tube? Wait and see. Will he always have seizures? Wait and see. Will he always be on so many medications? Wait and see. I could go on but you get the point.
Can anyone fix my baby?
My heart aches for the Dekornes, I want their baby to be fixed.
“I waited patiently for the Lord, he turned to me and heard my cry.” Psalm 40:1