Monday, December 20, 2010

Here We Go Again

It was midnight and the house was quiet.  All the children were asleep - or nearly all.  One sweet baby woke up just as I was slipping into bed, and the tired little tyke fought sleep for a long time.  I held him and reached for a notebook to jot down my thoughts, planning on typing it out later.  He'd grin at me, a bright toothless smile, then collapse on my shoulder to rub his eyes.  He might fall asleep again, but I didn't know if I could.

At church Daddy was holding Angelee.  He stroked the side of her head, fuzzy with regrowing hair.  With concern in his eyes, he signed a quick message to me.  Balancing a fussy baby, I couldn't see clearly, but it looked like he was worried about how bumpy her head was.  It does seem like her nice, hard skull has gotten a few more lumps.  Would a comb or brush scrape or catch on the uneven topography?

Later in the day, Daddy went to wake Angelee from a long but started-too-late nap.  He came out chuckling, telling me that she was sound asleep - with her eyes wide open.  He went back down the hall to her room, but didn't come out very quickly.  It didn't take long for that nasty "what if" monster to grab me.  What if she's quiet for so long, and has her eyes open... because she is... gone?  What if today was the last day we got to keep out little girl?  I'm not paranoid very often.  But sometimes it just happens.  He reappeared with a sleep-groggy girl in his arms, and I started to breathe again.  Stupid monster.

I snuggled Angelee as she slowly woke up.  I wrapped my arms warmly around her, and she nestled into me, trying to go back to sleep.  I rubbed her soft cheeks, her silky hair, and then I felt it - the soft spot in her skull that he was trying to tell me about at church.  In the middle of her once-smooth-and-hard-but-now-lumpy bone flap was a not-supposed-to-be-squishy spot.  I felt sick.  After a few moments, I gently probed the area.  Yes, it was real, and soft, and slightly pulsating with Angelee's heartbeats.  I was feeling Angelee's brain again, where there used to be hard, protective skull.  What happened?

I got on the computer and did some research.  It looks like it's not uncommon for a reinserted bone flap to get absorbed by the body.  The chances of this happening are as high as 50% in some studies!  There is a better chance of this happening with young patients (check), and when you have a larger flap (check).  Why did they not tell us this?  I hate it when a medical procedure is touted as being all great and wonderful without any mention whatsoever of negative outcomes or chance of failure or possible side effects.  It's just not honest!  It's not like having that knowledge would change what appears to be happening right now, but at least you could be prepared for a different possibility.  I am angry, and afraid.

I am scared that my little girl will have to go through surgery again.  I don't want her to have to go through all that.  And what will they put back in to cover her new hole?  Something artificial?  Will her body reject it, too?  Will it have to be replaced as she gets older and her head grows?  "Replaced" sounds like such a dull, ordinary word to describe "cut open your head and mess around with your skull."  I really don't know that I'm up to doing all this again.

I should be counting my blessings, feeling grateful that we have such an amazing miracle as simply still having our daughter alive.  But as the dark winter storm outside pounds on my window with wind and rain, I can't help but cry a little bit.  I'll have to let go of the "happily ever after."  Again.

The baby is finally asleep, his rhythmic breathing calming my worried heart somewhat.  I should rest, too.  I don't know if I can.

1 comment:

  1. Oh no! I'm so sorry Janette. Go ahead and cry. It's the normal, natural thing to do. I'm really sorry.