Encamped

There are women who spend months on end with their babies in NICU and progressive care wards. I admire them. In just two weeks, I've slipped a cog. Seriously. I'd like to introduce you to Charlie. He's helping me on my quest.

Charlie works for the hospital, you see, but he's on my side. And please, don't mention how strongly he resembles Charlie Chaplin. It only embarrasses him.  At any rate, its been a tough week for both Charlie and myself. When my hubby came by last night to take me off property for a bit, I was very hesitant to leave. He had tried unsuccessfully for the last three nights to take me out to dinner somewhere other than the hospital cafeteria. Last night he was more determined than ever to help me escape. But how can you escape from a place you choose to be? I think sometimes as a woman its hard to explain an emotion to a man- an emotion that goes waaaaay beyond logic and reason but is so strong it's more true than either of those other concepts- as tangible as matter itself. And last night every fiber of my most primitive being screamed- CAN NOT GO.  No logic. No reason. Just clear, simple, brute force of will spurred on by a set of emotions that will forever defy a name.  Finally, I decided to explain it to him like this:
Him: It will do you good, princess. You have been cooped up here too long.
Me: I can't. I'm encamped.
Him: Encamped?
Me: Yeah, you know. You play video games. You watch war movies. I'm encamped. I'm laying siege to their fortress. You don't just up an leave an encampment, do you?
Him: *thoughtful for a moment* It's just that you know, I heard a rumor that there are still such things as trees and fresh air outside.
Me: That's not what my spies tell me.
Him: You have spies?
Me: Sure. You don't think I'm encamped by myself do you? Can't lay a proper siege without troops. I have an army. Very loyal. They obey without question.
Him: *Looking around at my invisible troops.* I would imagine. You likely execute dissenters.
Me: Yup. It maintains order.
Him: Well, how bout you just place some troops on guard or something while you and I go make a supply run?
Me: Well, actually I've already got snipers strategically positioned on the look out for invading shunts, but the snipers are an unusual sort. Require constant supervision.
Him: Yet you give them guns?
Me: Of course, they're the best shunt-killers around. Besides their weapons only kill medical equipment. Specially designed.
Him: *sigh*

Now before you worry too much, my spouse is at least as stubborn as I am crazy and he did manage to talk me into a short excursion. And it did help.  Its a been a real roller-coaster ride these past few days and leaving did give me some perspective on the situation and I think I'm a better general for it. As a matter of fact, we may be winning the siege. The opposing generals, er, I mean, hospital staff tell me that I may be going home in the next day or two- WITH my faithful lieutenant Evangeline in tow. We never, ever, leave an officer behind!  Also, we have officially won the battle of the cathing. She has proven to them she can go pee-pee on her own and so the catheter is no longer needed!

At the moment, the fluid build-up in her back is stable. They tell me that its a small leak from her spinal cord sack where it was stitched back together during the repair. Since the fluid buildup is not growing, they feel that it will heal on its own and the leak will stop given time. Of course, then the issue becomes, if the excess isn't draining off through the small leak in her back, will the body begin to absorb it as it should, or will it back up and begin to collect in the brain necessitating a shunt? At the moment, that answer is unclear. I have alerted the shunt-snipers to be ready.

All kidding aside, I am glad that I'm not fighting this battle alone. I take orders from a great General and I believe with all my heart that He has a plan and a strategy that He would have us follow. It may not be what I envision, but until He tells me otherwise, I will believe for the best outcome I can dream of. There is an old hymn called "Faith is the Victory" that goes like this:

Encamped along the hills of light,

Ye Christian soldiers, rise.
And press the battle ere the night
Shall veil the glowing skies.
Against the foe in vales below
Let all our strength be hurled.
Faith is the victory, we know,
That overcomes the world.

So that's the update folks. More "wait and see" Bottom line: I know not where we march from here, but I know that Victory will be ever in our sights!

A strange planet...

You know that scene in Toy Story where Buzz arrives in Andy's room and can't figure out what's happened to him? I kinda feel like that.

Last night I finally spent my first night with my new family- all three of us together! It was wonderful in ways that words could never capture. At the same time it was...otherworldly in many ways. For one, I'm a new mom and I am baffled by the sheer amount of time she sleeps, and the frequency with which she eats and poops. I'd heard the rumors. I know now they are all true. ;)

But that isn't why I find this so surreal. What I struggle with is how I'm doing things, where I'm doing them, and maybe even sometimes why I'm doing them. That pretty much covers the full gamut that confusion can run. So on one hand I'm happy, confident. On another I'm just spacey, going through the motions with a genuine smile, pleased to have the opportunity to be with my family, but still lost in the fog of incomprehension. I feel a little guilty about that...like I should somehow just be able to see this all logically without my emotions (anger, frustration, sadness, etc.) interfering. After all, I knew this whole hospital stay was coming, didn't I?  But like a child, there are moments I want God to fix it now. I want the stress to be over.

Yesterday when we moved from NICU to 2 West, I was hoping that things would somehow feel more normal, but somehow I only just managed to realize how not normal they really are at the moment. As I was walking from NICU to her new room (with bed and pull out chair to accommodate both mommy and daddy) I couldn't think of how pleasant it was that they had Lego boards and other toys stuck to the wall in the corridor. All I could think is "I just really don't want to be here." I guess sometimes it doesn't matter how nice something is..or how dismal. You will feel what you feel anyway.

Of course, I do find it amusing that our ward is located in the old part of the hospital, tucked away behind a security door. Outside our window is a construction lot for the new children's hospital they are building. It's full of rebar. Beyond that is the scenic vista of the parking garage. Yet somehow after settling in, none of that seems as gloomy as it did just yesterday. I adore the staff. They have been so helpful to me in getting settled in and feeling as normal as I can here in wonderland. Plus, I really do appreciate the fact that she has doctors monitoring her right now with all that's going on.

And God is here. I feel Him with me, despite it all. When I think about it, the Almighty must have a pretty good idea about what it's like to leave the familiar to come someplace where everything is foreign. I mean, Its what Jesus did for me. How many time did he look around and go, "This is soooooo messed up!" I guess that's why He can give me such good comfort now. As of this evening, the swelling in her back has decreased some and they are now cathing every 12 hours instead of every 8. They are getting very little urine out during the cathing and her diapers are wet. The VCUG showed no reflux. On Monday the attending pediatrician will be checking with urology to find out what's up. More waiting. But I can handle it. I named her "good news" for a reason. My little Evangeline is a miracle in process.

Romans 8:31-32 "What, then, shall we say in response to these things? If God is for us, who can be against us? ³ He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things?"