What do you do when you can't fix your baby? When just a kiss and a hug can't make it all better. We started this journey on Ellie's second birthday with what we thought was a stomach bug, from there it has been a whirl wind of Dr appointments, ER visits, and diagnosis. Almost every diagnosis along the way made sense and they treated what they saw.
So here we sit tonight...or technically this morning...(I'm losing track) in the PICU at UVA waiting on her second MRI. We told Monday evening that my sweet girl has a mass in her brain that is blocking the fluid in her brain from draining. She was taken to surgery very quickly to have a drain placed to relieve the pressure and her first MRI done. As a girl and a mom, my mind went straight to her hair. The wonderful people here, tried their best to not shave her hair and even saved me some of her hair, her first haircut...what a way right! We got her back a few hours later, with her new hat....definitely not mommy crochet grade...I'm still trying to convince them to let me add a flower! They gave her monkey a hat too (which also needs a flower).
We got to see the MRI pics of this perfect little head with, with that ball right in the middle. A very surreal moment...so that little thing is what has taken my baby from crazy two year old to a cranky lump. Something so little is changing our entire lives.
More wonderful people have swept in to love my child, bathe her, steal applesauce for her, read her books, bring her presents and take care of us.
I'm more overwhelmed at the amount of love we have received from our friends and family. There are so many people praying for my daughter. I know my God is awesome, but he continues to amaze me. He has given me such peace during this insane time. I am so grateful for that. He's given me my girl back. Over the past
24 hours she has laughed, played, cried but best of all smiled. Oh how I have missed that smile. She is having a horrible time sleeping, but she continues to be as sweet as she can be....considering!
So today, Valentine's Day, a day filled with love, my love will have surgery again. They will biopsy the mass, make a hole to help her fluid drain (there is some big fancy word for the procedure...but I'm too tired to find where I wrote it down...or lazy). The doctor will also attempt to reduce the size of her mass. Once they are done, we wait for results. I can't say I'm excited about living in the hospital for a week, but I am praising God for this hospital and all those on it! (I'd really be excited for a room with a bathroom...this waddling down the hall is getting old!)
I know lots of friends and family have only gotten bits and pieces, so I hope this helps...I know its helping me.
Lots have asked what they can do for us, please just pray for my family. My I haven't seen my son since Monday and I miss him so much. I have an amazing support system helping me with him bit I miss him. My husband is heartbroken because he can't fix his princess. And me... My prayer has always been that in time of a crisis I would still be faithful and still praise my God. I'm doing good, just gotta keep it up.
One last request. If you know Ellie or me, you know she always has a hairbow in for every holiday...well today she can't wear hers. Wear one for Ellie today if you can...she loves pink and there's no better day for pink then today! Hug your babies and thank God for them.
I will not proof read this...so forgive me...plus I gotta go waddle down the hall!
Thank you all,