Friday, June 1, 2012

Goodbye May...can't say I'll miss you.

I know I don't write often.  I write even less often about our experiences in parenting our medically fragile child, Baby S.  But part of the reason I don't write all that often, is because her care eats up huge tracts of my time.  And most of the time it's boring stuff, kind of like taking care of an infant.  I changed a lot of diapers today.  I fed the baby eight times.  I washed a lot of baby laundry.  I played with the baby.  I was falling asleep in my chair as soon as the baby went to bed.  That sort of thing.

For the most part, we had developed a routine that worked.  Over the course of the last year, baby S had gone from a screaming, inconsolable child to a reasonably contented one.  Her issues with food had resolved.  She had gone from a diet of highly specialized formula, to a diet of pureed, real food.  She gave "growth spurt" new meaning.  Instead of a child living in a pattern of waxing and waning sedation, she was slowly weaning off her huge cocktail of meds.  She was also more aware of her world, which had its good and bad parts.  The good parts meant she could plug in more, and learn more.  The bad parts meant she was more easily overstimulated, irritable, and frustrated.  Overall, we chalked this year up as a good year's work.

Then came surgery.  Baby S had grown so quickly, that it rapidly became evident that her hips were drifting out of joint.  She needed to have her legs and pelvis reconstructed so that they would stay and grow in place.  For the last month we have struggled to care for her.  In the beginning she was clearly in a lot of pain, and everything was a challenge.  But children are great healers, and yesterday we were able to look at x-rays that showed her bones at the time of surgery, and her bones now.  The plates and screws are firmly in place, and new bone growth has filled in all the gaps.  Incisions are clean and clear.  The surgeon was elated.  He pronounced it a success, and expressed his opinion that she should be pain free.  

Which definitely did not explain why she was in the next room, screaming at the top of her lungs, her legs locked into an unlikely pose, vomiting all over the exam table.  

So we moved on to the next appointment of the day, and the next, and the next.  And at each stop she startled everyone with her lung capacity, pained looking positions, and her violent gagging and vomiting.  By all appearances she was a tortured child who needed immediate relief.  And at the end of each stop we were told that she was physically healthy.  Each office full of professionals, and each waiting room full of waiting patients breathed a sigh of relief that the screaming child was leaving...and not going home with them.

We have lost every inch of ground we fought for in the last year, and then some.  Every single one.  Trust and attachment are gone, nowhere to be found.  She rejects nearly all contact.  She rejects the food we put into her stomach.  She prefers to be left in her crib, alone, in a quiet and darkened room.  Everything else is met with vigorous protest.  

It reminds me of when we raised a nest of baby rabbits.  Sure they're cute and fuzzy...but don't go in there.  Don't turn on the light and look at them.  Don't talk or touch them.  Or they'll die.  Just wake up around the clock, hold them enough to get their formula in their bellies, then put them back into quiet seclusion.

It's not fun.  It makes you feel rotten all the time.  There are no good choices.  Every choice you make has negative consequences, and you second guess everything you do.  And you pray that it won't take another year to get your ground back again.  And you pray she won't need another operation when that happens.

4 comments:

Brenda said...

My heart and prayers are with you.

anya* said...

I am glad May is over for you, too. Hopefully June will give more…more of what everyone in your house needs. I don't even know what else to say because as I read this post I get so emotional, for you, for Baby S- and as I know you know, emotions are crap.
xo

QueenB said...

Oh my gosh, Scraps. I apologize for not being in touch and at least offering soothing sounds and a phone hug for you. Wow. Sounds so terribly hard. You are in our prayers constantly. Take care of yourself, and here's to a virtual cup of tea, and a few random laughs.

Lisa S said...

Oh no, poor Baby S. Can't imagine how hard it must be to watch her suffer so much and be able to do so little. My heart goes out to all of you.
Lisa S.