"For you created my inmost being;

you knit me together in my mother’s womb.

I praise you because I am fearfully and wonderfully made;

your works are wonderful, I know that full well.

My frame was not hidden from you when I was made

in the secret place, when I was woven together

in the depths of the earth. Your eyes saw my

unformed body; all the days ordained for me

were written in your book

before one of them came to be."

Psalm 139: 13-16

Saturday, August 4, 2012

The Tap Dance

The last two weeks I have felt like we are on a crazy hydro roller coaster. When we got home from the hospital, Meghan was doing great apart from pain after her surgery. However, her shunt was working so well that she drained very quickly and we soon found ourselves in the Neurosurgeons office turning up the shunt setting. After that, we had a few of the best days we've ever had with Meghan- the real Meghan- when she feels good. Over the few days, her fontanelle continued to sink and we thought we were ok. Then overnight, it had raised back up, the swelling around the valve (the external part of the shunt) increased to the point where it was worse than it was before her surgery, and once again, she seemed a little off. At our 2 week follow up after surgery, our surgeon decided to tap the shunt again- this involves taking some fluid from inside the shunt through her skin. Since only one of the cultures from the operating room had come back positive, initially they thought it was contamination. Now with her symptoms, we decided to rule out infection as a cause of the swelling. She also decided to drain the excess fluid from around the valve, and wrap her head to see if we could get the swelling to stay down. A brain ultrasound, a couple needles, and a sweaty baby later, we headed home with our head wrapped Meghan in tow.

48 hours later, Meghan's cultures are still negative (thank you God!). Our surgeon called us today and after we talked for awhile, we decided that the plan for now is to turn her shunt back down again on Monday, and see if that resolves her behavior issues, and hopefully the swelling around the shunt. If not, we may end up back in surgery to replace the valve with a different kind that might help seal off the hole in her skull a little better. At this point, we aren't sure why this keeps happening, and it may have something to do with the fact that apart from her hydrocephalus, it appears that we may be dealing with another type of brain malformation as well, causing the pressures to be different than they would be with straightforward hydrocephalus.

I can honestly say the only thing holding me together right now is my family, my dear friends, and a lot of prayer. Even our doctor said we need to take things one day at a time. There is a significant amount of uncertainty that builds when for many babies, this is a "once and done" procedure- at least for a while- and we just want to get to a place where she feels good enough to start making some serious developmental strides! Since the surgery, she has learned to grab her toes- despite the fact that she cannot roll over, or even hold her head up on her own yet. We know this little girl is fighting through this, and we want so badly for her to continue to progress to whatever her capabilities will be. The back and forth can be a little discouraging at times.

Joe and I were talking on the way to the hospital the other day, speculating how different our lives would be if Meghan were like typical babies. We both agreed that while we wish every child could be born healthy, we feel our lives are different, but indeed so much better because of Meghan. She adds a certain weight to life. The kind that puts sorrows and hardships into perspective, gives us a great compassion for children (and their parents) with special needs, and makes us appreciate every day in a way we otherwise would not. It also means that when we feel joy, we feel it times a thousand- so much so that as they say, you are able to dance in the rain. We have hope because we serve an awesome God. So despite the uncertainty, we wait, and put our hope in the one who is writing her story, and ours.

We wait in hope for the Lord;he is our help and our shield. In him our hearts rejoice, for we trust in his holy name.  
May your unfailing love be with us, Lord, even as we put our hope in you.  
Psalm 33:20-22


Working on my reach...

This is what pitiful looks like. 

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