Saturday, March 12, 2011

The Earth Shook...Part II

Friday I woke up to Liam's kicks. He wanted food in a bad way. So did all the other kids. They are little eating machines, I tell you. I don't know how they don't bankrupt us with food costs alone. It took me a minute to remember everything that happened the day before. But as he kicked me, I thought, if you're going to keep fighting, I'll keep fighting too. I knew if there were decisions to be made, I'd already made them.

I spent the day doing the things I was supposed to do, and filling up extra minutes with more online research. From studies, to papers, to Facebook, I was all over it. I'm a studier. I knew what an encephalocele was from a purely anatomical standpoint. I did learn about it in nursing school. But this is something I have no experience with beyond Sarah, and with Sarah it wasn't her primary diagnosis. I was on the hunt for answers.

The doctor's office called earlier than I expected with the initial results of my amnio. No Trisomy 13, 18, or 21. I think I did a happy dance, but I wasn't really surprised. I just didn't feel like that was the issue here. They're still going to do further study to check for less common chromosomal abnormalities. But I'm hopeful they'll be negative, too.

So, here's what I found.  It's worse because it's on the back of his head.  Then again, the brain involvement looks small on ultrasound and that's good.  The larger part of the cele is all CSF, the fluid that surrounds the brain.  But there's no fluid on his brain.  That's good, too.  He doesn't have a Trisomy (we think) which increases his chances of being okay.  And he doesn't have any other abnormalities, which also improves his odds.  Now I'm getting all kinds of Mama Bear protective.  Hang in there kiddo and I'll hang in there too!

I had my MRI in the afternoon which didn't take long, apart from the parking, walking, sitting, and waiting.  I think I've had my fill of waiting and it's not remotely over yet.

After the MRI I asked if I could see the images.  I know the Pediatric Neurosurgeon won't be able to interpret them for me until Monday at the earliest, but I just wanted to see them.  Call it the nurse in me.  So, they walked me down to the print room where they put them on a cd for me.  And you know how it goes.  Things just happen in the most organic way.  I ended up talking to the lady who worked there.  A lovely lady from Africa with a lilting accent that I could have listened to all day long.  I found out that her grand-daughter had been born with a serious heart defect and it had healed itself to the shock of the doctors.  She asked if I believed in prayer, and she prayed with me.

I'll be honest, people.  My faith has not been shaken.  My faith in religion has taken some hard hits.  But I do believe.  And I believe that all things are in God's hands, and that there is a purpose here, a bigger picture I can't see.  I have to believe that.  Because I'm going to be really pissed off if this is all for nothing.  If you believe differently, I can respect that.  But this is where I am.

I took the cd home and began viewing the images.  MRI images are really cool!  I'm not a doctor, so I can't interpret them.  But I definitely got a sense of things from checking them out.  This is my Liam:

This picture isn't the best quality.  I had to take it with my cell phone.  But if you look at his head, you'll see it's all light grey.  Then there's a circle at the back of his head that's also light grey.  That's the encephalocele.  It's encased in a larger, light colored sac that's all fluid.  But doesn't he have a sweet little nose?

So, we'll have to wait and see what the neurologist says, but I'm hopeful.  The brain involvement looks small.  He's got a lot working in his favor and I'm holding on to that.  Friday the news of the Tsunami's from Japan's deadly earthquake were everywhere.  For me, Liam was everywhere.  His diagnosis had crashed over us, but the water was starting to recede.  Maybe with a little more time, I'll be able to take better stock of things.  In the meantime I go minute to minute, trying to hold on to all the little pieces of hope I'm given.  From the blogging Mama who wrote back to me, to my network of friends from real life and the internet, all reaching out with love and concern.  We'll get through it, right?  People do, I'm told.

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1 comment:

  1. I'm so sorry Anne. I will be praying for you and your family and your sweet darling little boy.


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