Wednesday, May 27, 2009

Wednesday

I have never written this down before, so I thought I'd do it here.

It was early evening when we took her to the ER. I was freaking out because she wasn't looking at me. She wouldn't follow her favorite toy that I was dangling in front of her face. She wouldn't grab at it. She always tried to grab it. She had been sick for a few days and the pediatrician said it was probably a bug. That's what we figured. But Wednesday was different and we felt like she needed to be seen again.

The nurse came in and asked for symptoms...again. These were different from the ones we gave the pediatrician two days before: bulging eyes, won't focus, acts like she can't see us or anything we put in front of her. They decided she needed a CAT Scan because they thought it could be hydrocephalus. Soon after, they wheeled us down to X-ray, swaddled her in a lead sheet and took a picture of her brain-little did I know it would be the first of many.

Back in the room, the nurses and Doctor were in and out checking, writing, tilting their heads and smiling sadly at our lethargic baby. The resident that was assigned our case came in again, but this time she wasn't alone. I noted to myself that she had an attending with her. Years of ER and Grey's Anatomy had taught me that this wasn't a particularly good sign. They told us that they were right about the hydrocephalus, but that wasn't all. There was also a tumor in her brain roughly the size of a golf ball. The attending then said something I will never forget: "There's nothing more we can do for her here".

They called Duke and UNC to take over and Duke called back first. This whole time Lila wasn't screaming or crying or freaking out. I kind-of wish she were. She laid there just staring and every once in a while she would let out a little whimper. When the Life Flight crew from Duke showed up, it took me off guard a bit. Again, my only understanding of this was from T.V. and when they used Life Flight it was serious. Critical.

They carefully packed up my child into a car seat and strapped it to a stretcher. It was decided that I go with Lila and Ben would go with his parents and meet us at Duke. The Life Flight was an ambulance and I sat up front with the driver. I remember the guy being very nice, trying his best to make small talk-probably in hopes that I wouldn't lose it while he was driving.

When we got to Duke, she went straight to the Pediatric Intensive Care Unit and we went straight to the waiting room until they told us we could go see her. When they finally did let us back into the PICU, Ben and I were met by a team of doctors and nurses. I remember exactly how I felt when we went into the room--I can't describe it, but I certainly remember it. I do remember the way that they looked at us. They knew so much more than we did and they knew that they knew so much more than we did. I had never felt quite so insignificant in my life. They put an EVD (external ventricular drain) into her severely swollen 4th ventricle to drain out the extra CSF (cerebrospinal fluid) that was causing the hydrocephalus that was caused by the tumor. Although they said she could breathe on her own, they sedated her and they needed to intubate. She was "stable" with a heart rate hanging out around 40. I later found out that normal is 80-120 for a child her age. Sometimes ignorance is bliss. So, we sat at her bedside, completely helpless. When we couldn't take anymore of that, we tried to sleep in the tiny waiting room on beds made from chair cushions.


This is what I was doing exactly one year ago. Do you remember what you were doing?

My friend, Valerie asked me some questions about this experience. To read it go here

14 comments:

Shiloh said...

oh annie, i remember what we were doing. we were recovering from chucky cheese, missing you guys, crying with and for you, and most of all praying for you. crazy year huh.

Holly said...

Thanks for posting this, Annie.

Jaggers Brain said...

Annie... you're family is such an inspiration. I remember when I saw Val and James at Brant & Jen's sealing, they told Chalise, Ella, and I... and we all joined in the fast during the first surgery. You're little girl is an amazing fighter!

skumar said...

Sobbing...then and now. Thanks, sister

Diana said...

We were (or I was) pregnant with Jakob and on bed rest. Worried about little Lila and not knowing if we would ever see her again. I am so glad that prayers are answered and that Lila is one of Heavenly Father's many angels!

Janey said...

I cry just reading it--you guys are all amazing, and I'm seriously glad that this story has such a happy ending!

Kresta said...

Amazing. We have so much to be thankful for every single day. Tears...lots of tears and a heart full of gratitude. Love you.

SmithFamily06 said...

Annie, I'm so glad you shared this, thanks so much for the example you are to all of us. I love hearing stories and seeing pictures of Lila!
misty

rachelle said...

so i just cried. ahhh!

lila is adorable. kelly and i think she is so cute and looks like ben!

lindsey said...

You guys are SO brave and amazing. Here's to a year that just keeps getting better and better.

Amanda Henderson said...
This comment has been removed by a blog administrator.
Anonymous said...

One year ago, I was alone on the road in a terrible rainstorm and you called and I cried a lot and called you dad who had to talk to me all the way home. Then I called your siblings and your grandma and aunts and we all cried and prayed. Your father was in B'ham and he had to fly all night so that we could get on a plane the next am. We were so scared. And now a year later, we look at this amazing angel( who looks like her TuTu grandma, not Ben )and thank our Father in Heaven for keeping her safe thru this horrendous year. You and Ben are the most amazing couple I have ever known and I love you all....MOM

Tara said...

Annie - I am speechless! Nothing I can say would even compare to what you, Ben, Jack and Lila have been through in the last year. I am so thankful that she is doing good and one of Gods little and most precious miracles.

Shara said...

Annie, you and Ben are amazing. I cry every time I read something about Lila because I think of my baby girls and it breaks my heart. Thank you for sharing your experience. I have often thought lately to get on my knees and thank my Heavenly Father for my family's good health. I get caught up in the stress of bills and such when I really need to focus on what I am blessed with. So thank you! We are so happy for your family.