i will praise You in this storm

Now, I'm all about being positive and stuff, but this really sucks!

I did get to hold her and cuddle her and kiss her round head - for 3 hours straight during the night.
They just can't get Adeline's pain under control. 
She is miserable. She has cried and cried and cried, her voice hoarse from being intubated.  My arms fell asleep from holding her so tight.
If she isn't being held, someone has to stand by her crib to keep her from thrashing around, we pat her tummy and tell her everything is alright.
Her 15 tubes became a tangled mess as she tossed and turned and kicked.
Shes had a double dose of morphine, some tylenol, darvocet, lortab, ativan and benadryl...and the pain finally stopped...for 45 minutes.
We both slept for just 45 minutes when I woke up to 5 nurses in the room. she had pulled out her iv and arterial lines and there was blood everywhere
Her hemogloben dropped down to 5. She had to have a blood transfusion. She would have needed one even if she hadn't pulled her line out, but it certainly didn't help.
She has had a fever.
She itches terribly from all of the morphine, so she keeps rubbing her splinted hands in her eyes.
Her face is swollen, and she can barely see.

We have had at least 6 doctors in here and they all say the same thing,  This is all normal after cranial vault reconstruction and it will get better with time.  She has a unimaginable headache, she can't see, she is in a strange place with strange things coming out of her body. She's tired but she can't sleep. She hates the nasal cannula. She is constipated - her belly is distended. Her whole body itches but she can't scratch.  And she doesn't understand why. So she cries. And I cry.

But it will get better.