Your Stories: Measure twice, cut once

Julie wrote previously about bifocals for young kids.  Here, she shares her story of her daughter’s strabismus and surgeries.  Her story is not yet finished, but I’m very grateful to Julie for sharing the story so far.  You can read more of Julie’s writings at her blog, BalancingMama.com. – Ann Z

Measure twice, cut once.

This is a common mantra of crafters and handymen. In those fields, an inch is an inch, a millimeter is a millimeter. You measure, you cut, and as long as you keep a steady hand, it all works out in the end.

Many of us would be a lot more relaxed right now if this were the case for strabismus surgery. With eye muscle surgery, you never quite know the outcome until post-op, often many weeks later. The physician performs surgery with the best measures possible, but there is absolutely no way to know for sure how the brain will react. Consequently, parents have no certainty of surgery success until the waiting game has come to an end.

In our case, strabismus surgery flipped our world around and left us worried, guilty, and still waiting (almost one year later) for answers.  Our sweet Amelia was diagnosed with intermittent exotropia last Fall. We noticed her eye(s) turning out when she was tired. She could keep her eyes straight while alert, but the natural placement of those baby blues was actually a bit outward. Outside of our home, the world could not tell she had an eye condition. We were left with a decision: Do we move forward with surgery to move the muscles or leave it alone and wait it out?

Initially, we decided to wait it out. But a couple weeks after that first appointment, our then three-year-old daughter cried out and threw herself on the ground while watching a movie. Shocked and worried, I ran over to her to find out what was happening. She screamed at me, “Mommy, I want my eye to stop moving!”

It was the first steep plunge on our roller coaster ride.

We scheduled her first eye muscle surgery for January 12th, 2012. The surgery was quick and recovery was fairly painless. But her eyes were crossed. We held our breath and waited… three weeks for the post op… a few more weeks until the official 8-week healing period. And unfortunately, those eyes never straightened. They were drastically worse than ever before. Crossed in instead of out, visible to most everyone for the majority of the day. By March, the ophthalmologist insisted on a second surgery.  The plan was to put the first muscles back where they started and to move the oblique muscles instead.  We were confident. We were ready to put an end to this journey.

Surgery #2 took place on March 29, 2012. Almost immediately, we saw a difference in her eyes. They were red and puffy from surgery, but appeared to be straight. We breathed an enormous sigh of relief.  That wasn’t so bad! It was all worth it. A few weeks post-op, the physician was thrilled with the results.  We scheduled a follow up for two months later, and had every indication that we would then move on to a simple annual check up. I blogged about my happiness on April 19th in a post titled A Promise.

The joy was short-lived. In May, six weeks to the day of surgery #2, I saw her eye turn in. The color drained from my face and an enormous lump formed in my throat. I begged God to say my own eyes were simply playing tricks on me.

Time would snap me back into reality.  As months have passed since May, Amelia’s eyes are back to turning in frequently. Most everyone notices. We are battling an intense parental guilt. Her eyes turned out before. They were not this bad!

What did we do?!?

As of today, she is in glasses. Her now esotropia is inconsistent. Unlike her initial exotropia that occurred every time her eye relaxed (a muscle issue), the crossing now happens when she focuses. It happens when she looks down, drinks through a straw, or looks at something sideways. We are giving bifocal glasses a 9-week test run to see if she responds favorably to them. Surgery #3 may be very likely, but we owe it to our little girl to try this instead. November 9th is the big day, the nine-week follow up after getting bifocals for the first time.

I do not write our story to scare anyone. 80% is still a pretty strong success rate. There is absolutely no way to predict a strabismus surgery outcome. Surgery was the right choice at the time, but it does not hurt any less when your sweet child falls into the 20%. It is no less heartbreaking to hear from a physician’s lips, “she is one of those rare cases”. It is not easy to let go of guilt when your own decision to move forward with surgery seemingly made her worse. There are so many unknowns when it comes to strabismus and eye muscle surgery. It is an anxiety-ridden waiting game.

Measure twice – or more.

Cut once – hopefully.

Then wait. Hope. Pray.

Our story is not over; we will continue to wait and fight for our baby girl to be comfortable with her vision again. Our tale has a happy ending somewhere. We just need to grasp on to some patience until it arrives.

“Everything will be alright in the end. If it is not right, it is not the end.”

— Julie is a part-time working mom, mother to 4-year-old Amelia, and the blogger behind BalancingMama.com.

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2 responses to “Your Stories: Measure twice, cut once

  1. Pingback: Your stories: Pick a Doctor « little four eyes·

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