The MRI and EEG performed on Rose’s brain today were of less concern to the doctors than the post op EEG that they did a few days ago when she started fitting.
There was some evidence of past epileptic activity but it’s been confirmed that nothing catastrophic occurred during her surgery. Rather the seizures are probably a result of the incredible stress the blood transfusions during her operation put her brain under. There may be a smaller brain injury but that may not be discovered until some later stage (2 years was given as a vague example).
The doctors had prepared us for the real possibility that Rose had a catastrophic brain injury so it’s been an intense 48 hours. They assured us that if this was the case they would allow us to let her go peacefully.
I was saying to Andrew that it’s like each horrible possibility once it’s been discounted we should be relieved and happy but there are so many other things I worry about – all the X-rays and MRIs, even head ultrasounds, the drugs and lipids and light and noise and tubes, her prematurity, the operation, everything that’s keeping her alive. What long term consequences these things have for her. I know I should focus on today and Andrew definitely is and everyone in NICU implies it’s the only way to stay sane… but I don’t believe in this world and I’ve never been good at blind faith. It’s just all so surreal and I want to believe everything is going to be okay but it isn’t okay. My baby should be in my tummy. How can anything else possibly compensate for that?!