Not a very good day

Least you worry, Bella is doing fine.  I try to keep this blog about her, but today my feelings are coming through quite loudly.  She is the same as yesterday.  Same sats, same vent settings, same Nitric level, same everything, except a few more bradies.  She is just ticked about the large OG tube going down her mouth into her stomach.  She really hates that.  She is doing her darnest to figure out how to either chew it off with her toothless gums  or work that tape off with her little hands.  :)  Soon, my little fighter, soon.

 

She likes to rest her hands either on her OG tube or her trach.  I have learned to reattach that thing very quickly!

 

On the left side, she likes to rest her hand on her blue tube.  I can re-attach that one quickly too!  :)  It must be soothing to hold onto something.  I guess she gets tired of holding onto Mama.

Least you worry, her little hands are restrained unless I’m right here.

No, the one having the hard day is me.  On the day of her emergency surgery, I happily signed all the forms.  Yes, you have permission to remove my baby’s small intestines or her large intestines, or do a bowel re-construction, whatever, just fix her.  And they did.  They cut off part of her stomach and removed all the infection – and viola!  She was better.

But now this thing with her eyes has really gotten to me.  One thing I really love about Bella is her eyes.  She stares into my very soul.  She is so intense.  When I look into Bella’s eyes, I see intelligence and strength.  I see depth and insight that I can only glimpse the outside edges of.  When I thought her eyes were just withdrawing from her narcotics, it didn’t bother me.  She’ll be back.  Now what?  I feel stupid today.  I don’t speak eye anatomy or brain anatomy.  I don’t understand everything.  I feel dumb.  I am sad.  I want them to fix it.  Give me back her eyes.  Let me see into my baby’s soul again.  What if they can’t?  Then they can’t and we’ll move forward.  “And thus it is.  Amen.”

On the medical side of things:

We were supposed to have an MRI.  You can’t have an MRI on Nitric.  Nitric and large, powerful magnets don’t mix.  So we’ll have a CT scan in the interim.  We are also supposed to get a PICC line, since she will need IV therapy for longer than 7 days.  Oh!  And so much fun, she remembered all about bradys.  She has been showing off in that department today.  How fun! 

Someone weighed Bella sometime.  Her weight is now 5.4 kg or 11.9 lb.  So in the last month and a half she has gained 0.2 kg! That puts her at the 25% for weight on the DS chart.