Friday, November 18, 2011

Thank You Rocks

Since about two weeks after we got baby girl's diagnosis, I have had a small grey rock sitting on my nightstand. Several times, as my husband was helping me clean our bedroom, he would pick up the rock and ask me, "Can I get rid of this?" or "This isn't important, is it?"

He knew the answers to those questions were, "no you can't" and "yes it is" respectively, but he was hoping that with the forgetfulness of pregnancy, those same hormones that made me try to use a can opener on a pot and set an unopened can on the hot burner, would wipe from my memory what I intended for that little stone. He never got that lucky. 

That rock, at least in my mind, was very significant. It's destiny was to adorn the pinnacle of my "thank you" rock pile. Humor me please, while I give you the back story.

Once upon a time, when the people of the desert wanted to create a memory, they would stack up rocks into tall piles. That way whenever anybody passed by they'd be all like "why are those rocks stacked up like that?". Then somebody would say, "oh, that's because King so-and-so won a great battle here" and they would tell the story. And the story would pass down for generations and be remembered.  From a cognitive psychological point of view it was (and still is) a brilliant mnemonic strategy.

Well, anyway, one day as I was thinking of my baby and her future, I looked down and saw this rock. I picked it up, put it in my pocket and kept on walking. (I should probably take this opportunity to apologize here to my mother who found all sorts of strange things in my pockets over the years. Sorry, ma!) Anyway, I played with the rock, turning it over in my hand as I walked and I thought of those ancient rock piles. I thought, "you know, I may just need one of those!"  Something to make people ask me why rocks are stacked up on my lawn. And I can tell them, "Oh! Those rocks are there because a miracle happened in our family!" Following up with details about how God gave us a whole series of victories. And Evangeline would one day tell her own children. And so on.  It would be my thank you memorial to God for helping me through. Anyway, I admit to being emotional during my pregnancy. And forgetful. And yes, passionate about this new little person growing inside me. At any rate, that rock came to represent my hope for her.  So it sat there, a promise of a rock pile, a splinter of a miracle.

Now my tiny rock has a bigger friend. When Bj realized that even after her birth, I had no intention of ridding myself of my newly acquired pet rock, he asked me if I still intended to build a thank you pile.

"Sure!" I said, "It will go in our yard one day. In the garden."
"So, we've got time then to gather the rocks. You know, since we don't have a house or a yard or a garden."
"Yup. Plenty of time to find rocks to stack!" That's really why I've been in no rush.
"Still, we should get started."
I agreed with his assessment. And I genuinely love how he supports me in whatever quirky thing I'm currently trying to accomplish.  He's game for anything, my husband is! So, this is how we have both begun looking for rocks.

Just recently, I spotted a whole area full of them outside Baptist hospital. After pointing them out to hubby, he agreed that for symbolic purposes we surely needed one from that place where she was born.  I'm not really sure if those rocks were part of the landscaping or were just there randomly, but either way, I have just appropriated one for my collection. Its actually a thrill to have  the beginnings of my future rock tower bumping around in the back of our truck!

Over the next year or so, I hope to find more smooth, flat rocks for stacking. So, you know, this season where everybody is being thankful, if you see a suitable "thank you" rock, think of me! And then call me and tell me where you saw it- my rocks need more friends!!!

Tuesday, November 15, 2011

You keep using that word.....

I do not thin' it means what you thin' in means....

So we avoided the shunt for another 6 weeks.  We go back then for a follow up and another MRI. Basically the doctor said that the last MRI did show mild to moderately enlarged vents and that going by the MRI picture alone a shunt may be warranted. However, the clinical picture she presents is a whole other sort of Rembrandt. Her fonts (soft spots) have sunk back in. He was pleased that the spaces between her skull plates are closer together. All in all, he says she looks good. 

Inconceivable!!!  lol

Its been a roller coaster.  It really has.  But thank God, she is doing well without surgical intervention needed to relieve inter-cranial pressure!!!

Tuesday, November 8, 2011

The call....

So last week was busy.  We had our urodynamics test and follow up appointment.  Turns out she has normal bladder pressure (a good thing) but she doesn't void completely (not so good). However, right now there is no indication that we need to use a catheter to help her go pee-pee.

She went to the pediatrician and got her two months shots.  She's 23 inches and 13lbs now.  Her head circumference went down from the 75th percentile to the 68th, something I took to mean that perhaps her vents weren't continuing to enlarge with fluid. (well, that, along with the fact that the plates that had separated in her skull were not so far apart anymore)

Then, Friday after office hours came the call. I had the baby in my hands and a baa in the bottle warmer when I scrambled over to answer a number I didn't recognize. It was Dr. Aldana, her neurosurgeon. As soon as I heard his voice it was all I could do to keep from saying "Oh, crap!" I mean, its not like he'd call just to say hello or to tell me good news. Good news can always wait.

Turns out he had just finished reading the results from her latest MRI (something else we got done last week) and he didn't like what he saw. Her vents were slightly larger.  He said it was time we considered treating the problem; he wanted to chat more fully when he saw me at her next appointment.  I hung up the phone and remained pretty calm. There was a time when "shunt" was a bigger swear word than the one that started with F that my mom assured me was the worst possible word you could say and I should never, never, repeat it regardless of the frequency with with the neighbor boy sang it out while playing in his yard. But Friday "shunt" didn't hit me with the smack it usually did.  Why? because I'd been reading about the work Dr. Warf had been doing with a procedure called ETV/CPC.  In infants under a year old with spina bifida, ETV/CPC is 75% effective in treating hydrocephalus.  A shunt is 100% effective, but depending on how you look at it, it also has a 100% failure rate. They all stop working sooner or later. Such is the nature of a mechanical device.

I have been working pretty steadily to get Evangeline seen at Miami Children's by a doctor there who does the ETV/CPC procedure. I hope to hear back from them by tomorrow. I also want Dr. Aldana's opinion on the matter. I have been reading research and praying like crazy, wracking my brains trying to figure out how to make the best decision for her.

Then tonight it hit me. I just don't want to deal with this. Its a pretty natural feeling I think. Natural to look at the options for treating hydrocephalus, finding slight flaws with all of them, and thinking how much better it would be if she didn't need either option. Can't we just return this whole hydrocephalus package to whatever store it came from? How about trying to give back spina bifida while we're at it?  It doesn't fit. Its the wrong size. Its the wrong style. It has a broken zipper. Whatever they need to hear is what we will say if only they will let us send it back.

But things don't  work that way and I am happy to know that given the severity of what could happen without treatment, I do have options to choose for her. The alternative is too frightening to contemplate. But tonight please excuse me if I pray, pray like the night I found out about her diagnosis, pray until I feel God soothe me to sleep, pray until I know he's heard clearly exactly how much I don't want Evangeline to have hydrocephalus. Then, you will have to excuse me again for believing right up to the last minute that He will intervene and we won't need either option. The vents will go back down. The fluid will begin to reabsorb.

I remember thinking that it would be a long shot if we made it out of the hospital without a shunt because of the leak in her back. (That whole situation started with a call too...) I prayed and praise God, we made it out. With everything else I've done these past few days to try and find her treatment- looking in every medical journal abstract- calling my insurance company to get waivers to see another doctor who does another procedure- how can I forget the most important thing?  This whole weekend, how could I have forgotten to pray? Its a situation I must remedy. How God will answer me I cannot say. I only know that he answers every time. And from the beginning, he has told me that she is going to be fine.

I will close by remembering a story from my childhood when I went to Sunday school and the teacher told us Bible stories with little illustrated people she stuck to a flannel board. One of my favorite stories was  of Rack, Shack and Benny (found in Daniel chapter 3). I loved to hear about how, when the three of them displeased the king, they were sentenced to be thrown into the firey furnace. When their sentence was carried out, instead of just the three of them in the fire, onlookers could see a fourth man walking around in the flames. God had joined them and He protected them. They walked out unscathed.  I guess SB is kinda like our fiery furnace. No, I know SB won't kill anybody like white hot flames will. But it can sure seem scary to stare it in the face.  Rack Shack and Benny weren't sure what was going to happen to them either. They prayed. Then they waited. Maybe they hoped somehow the ropes would miraculously  fall off their hands and they could karate chop the guards and make a break for it. Maybe they hoped God would douse the fire with some holy water before they got too close. I bet they hoped for anything but actually getting tossed in. Most people would say that before you get thrown in, you can expect a miracle. But expecting to be delivered after you've gotten tossed in...well, not only are you crispy, you're also crazy! 

In spite of that, those three friends told the king, "Your threat means nothing to us. If you throw us in the fire, the God we serve can rescue us from your roaring furnace and anything else you might cook up, O king. But even if he doesn't, it wouldn't make a bit of difference, O king. We still wouldn't serve your gods or worship the gold statue you set up." (Daniel 3:16-18 MSG) 

Like Rack, Shack and Benny, I know God may not rescue us from the situation I currently fear (the hydrocephalus) the way I hope he will... but I do know he will walk through it will us. He will forever be that fourth man in the fire. The one who seems to show up late, but somehow gets there just in time. So, based on that, I reserve the right to believe that anything could happen between now and surgery day.