My daughter is 2 1/2 months old.
She was born poorly with a condition called chylotorax. Doctors did genetic testing and found out she has Noonan Syndrome.
She recently outgrew NICU and was transferred to our local children hospital’s PICU.
She got an infection and is very poorly. I didn’t realise how sick she was until this morning, one of her doctor’s offered to call the palliative team in case the worse comes to the worse.
He said her situation is very dangerous, and there’s a real risk she might pass away, and it could even be this weekend. She could get better but there’s a serious risk she does not. Her underlying condition is also still present.
Theres so much going on with her, I don’t write it down as it upsets me too much.
I can’t cope!! I don’t know I will cope if I lose her! I’ve never been in so much pain. She’s on the oscillator and sedated. I can’t look at her without breaking down. I am beyond terrified.
We don’t have childcare but my husband’s family is on their way to us. In the meantime I’m in our Ronald McDonald House with my other kids, and my husband is with her.
I am a mess.
How do people do this? Will I be in agony and sad for the rest of my life is she passes?
How do you ever come to term with that? Will any of us ever be happy again?
I want to die if she passes.
All she’s ever known is the hospital rooms and machines, she’s never seen anything beautiful.
I only got to hold her a handful of times. She only got to have my milk or formula a couple times because they stopped feeding her.
She was starting to get so much better and was off respiratory support a couple weeks ago, and now she’s on an oscillatory ventilator!! How is that possible??