Look who sat in the big girl chair today!
She is doing so great on eating!
She struggles with other things, though, like she isn’t rolling over anymore, and she stopped trying to crawl, and doesn’t reach for things. She prefers her right side, and can’t hold things or move her left hand or leg. Her left arm hangs usually, though it does move sometimes, but her hand stays clenched up and when they do her hamstring stretches, her left foot curls in sideways. Even with oxygen, her heart is working too hard.
They think she is just having too work too hard to breathe, and that it is using too much energy. They are talking now about a trach (which will require suctioning every 20 minutes 25/7) and also a g tube (in her belly instead of her nose), so she can keep trying to eat but also get more calories – she is almost six months old and not yet three pounds more than her birthweight.
Plus they say they can’t tell for sure what is cerebral palsy happening, with her red face and pale color and lacey skin and dusky hands, and what is just not having enough energy (oxygen and calories) to move and play and try, even though she wants to do so many things.
She has a new pulmologist, a new cardiologist, and I hope they will help. The others are telling us to be prepared for hospice.
I am not ready to give up on this baby.
Obviously the medical issues are significant, and awful, and hard, but there is help for those things.
If they will help those things, other things will fall into place.
There is hope. There has to be.
She is still brilliant.
She is still gorgeous.
She is still fighting so hard to live.
So we wait, wait and pray, wait and pray and hope for help, one breath at a time.