i've been asking myself this question for months now. Chris and i have been faced with very challenging decisions these past 3 months and tomorrow starts another set of bumps to get over. Olivia will be going in to the cath lab around 2pm. there are risks to this and we understand them but they bring up the questions when is enough ...enough?
we want to advocate for Olivia and we want to do as much as possible to give her a great quality at life ...so when these procedures come about these questions and scenarios are present in my mind.... i just want to know as a mom will i know when to say no...to stop... when do you decide to stop... will we have them ever stop...
I want Olivia to grow up... i hate CHDS. i just dont understand why babies have to be born so fucking sick...
tonight Olivia woke up more then they wanted and we had to stand there and try to keep her as calm as possible. she was extremely terrified ... you could see how stressed out she was and on top of her stats dropping and her heart rate going up to high. i did however manage to keep most of her focus on me and talking to her. its very painful to see her in so much pain and to see her struggle so much.
tomorrow we are having a care conference with the staff and to talk to them about our wishes if anything was to happen... and what we need as far as primary care nurses go.
Olivia is still under the goal for weight and is still younger than they wanted for her glen and repair but because of her current condition they have to go fourth with getting her into her surgery and trying to fix what is going on with her broken heart.
once again Chris and i have to place our sweet baby girls life in the hands of the doctors ....and pray that god continues to bless us with her ...im so scared. i want to hold her so bad.