Friday, August 26, 2011

Decisions, Decisions

Dave and I at our baby shower, after surgery but before we knew about Harper's stroke.

20 weeks.  That's how long I was able to enjoy my pregnancy before everything came crashing down.  20 weeks of excitement about having twins.  20 weeks of smiling and enjoying my growing belly.  20 weeks of being out in the world as a pregnant woman, proud of the babies growing inside me.

Then, the quiet ultrasound technician with a worried look.  The doctor telling us it was Twin to Twin Transfusion Syndrome, stage IV.  Packing for Houston.  The woman from Texas Children's Hospital telling me, "We can't make any promises, but we can give you hope."  The long, long night on the hard hotel bed, knowing it could be the last night with my babies.

The next morning, a flurry of ultrasounds, more doctors, surgeons and then, everything stopped for a moment while we made our decision.

The options, unthinkable:
- Terminate the entire pregnancy.
- Eliminate one twin (the sicker baby, which was Harper).  This would give Eliza an 80% chance of survival.
- Have a Placental Laser Ablation surgery, providing a 10% chance that both babies would survive.

Dave and I sit in a conference room looking at the floor, holding hands.  I know I should be thinking of what might happen, even if both babies survive.  The chances of heart problems from the hydrops or possible neurological issues for either of them.  But, my focus is singular:  keep both babies alive. 
"I just can't make the decision to eliminate a baby," I tell Dave.
"Then let's have the surgery," he says.

And that was it.  The moment that would change our lives forever. 

Of course we didn't know it at the time.  So much more would happen over the next two days.  The Chaplin came to pray with us before I went into surgery and it was then that I finally lost control and the tears came quick and fast.  It finally sunk in that the chances of my twins making it to their nursery was very, very small.  But, something about the way Harper had been moving and kicking me all day was impossible to ignore.  Was she suggesting I should have hope?  I decided yes and I held onto that hope through the surgery.  I was awake for the whole thing - a cruel necessity of the procedure - and I tried to remember Harper's message while they were separating my placenta.  In my hospital bed afterward, I could feel Harper moving all night, letting me know she was holding on.  The next morning, when the doctor arrived with the portable ultrasound machine to look for the babies' heartbeats, he only confirmed what I already knew - my girls were still there. Ten percent chance be damned!

The rest is history.  Both of my sweet girls made it through and are here with us today.  The pregnancy was long and every minute after that surgery was scary as hell.  Later came the NICU and the "routine" head CT that they "didn't expect to turn up anything."  But, turn up something it did - my biggest fear - a stroke during the Twin to Twin Transfusion Syndrome that had caused Harper's right brain to form abnormally.

...and the implications of our decision 15 weeks earlier came crashing down with the force of an anvil...

Which brings us to today - the therapists, the seizures, the visual impairment, the emotional outbursts, the strain on our marriage, the exhaustion.  My sweet, sweet Harper Jo and Eliza Scott.

Dave likes to consider what *might* have been, to wonder aloud if we made the right decision.  He is analytical in that way - turning things over in his head to see each side, shiny or dull.  He follows the decision tree down and over, through endless possibilities, examining our lives and offspring in each scenario.  It comforts him, I think.

I am the exact opposite.  It's just too emotional to let myself go there.  I force myself to stay in the present so as not to get carried away by the future or past.

But it wouldn't matter anyway.  Every time I do let myself think back to that day, reviewing the options we were given, I make the same choice, even knowing what I know now.  It was the only choice, really, because it never mattered what medical issues they may have.  In my eyes, they are perfect because they are here with me, against all odds, right where they should be.

Wednesday, August 17, 2011

Thursday, August 11, 2011

Uncensored Truth

A picture never tells the whole story.

Things have been difficult here at Twingate Central.

Harper started having seizures a few months ago and things have spiraled out of control since then.  Her seizures are more like full body spasms.  They cause her left arm to flail up and her body to lurch forward.  Often she hits her head on whatever she is sitting behind.  It is very hard to watch.  Furthermore, we have been cycling through various medications to try and control her seizures.  They cause side effects which Harper cannot tell me about so she mostly whines and is upset all day.

Eliza is crawling.  I am so proud of her and, yet, it only serves as a reminder of all that Harper could be doing.

Eliza sleeps through the night.  Harper wakes up once or twice most nights, her sleep interrupted by a seizure.  I'm still exhausted.  I drink a lot of caffeine.

Eliza babbles all day and says several words, including "bear" and "daddy".  Harper screams.

Harper now has 5 therapists helping her with various areas of development.  There is a therapist at our house at least once, sometimes twice, a day.  I'm always in my pajamas.  Her seizures have halted her progress and the hours of therapy we endure feel like slogging through mud.  It's a full time job coordinating our therapy appointments and doctor visits.

It's too freaking hot to even think about going outside.  We are going stir crazy in the house.  Many days, I just load the girls in the car and drive up and down Shoal Creek for 45 minutes so I can have a few minutes to myself.  Sometimes I listen to NPR, but most of the time, the news just depresses me  more.

After the girls go to bed, I zonk out on the couch and watch TV for a couple of hours before I pass out.  We eat take-out more than I would like to admit.

I wonder what Harper will be like in 20 years.  I'm afraid I will never experience empty nest syndrome because she will be dependent on us forever.  It is extremely hard for me to admit this.

That, dear readers, is the uncensored truth.  I haven't posted lately because I have been finding it hard to be positive and I'm too frustrated to be hopeful.  I'm embarrassed about this.  I know Harper and Eliza need me to be upbeat and do everything I can to create an environment where they can be successful.  I truly feel like I am doing that.  But only through my actions.  My emotion is elsewhere.  In a dank, dark space, far from the exersaucer and play mat.

Parenting is a marathon, not a sprint.  I'm sure this is just a rocky time and we will pull out of it and move on to happier things.  But, until then, this is a tough place to be.