Cassie Shepherd

October 28, 2015

Lazy Eye: Emily

Strabismus, or more commonly known as - lazy eye. I think the diagnosis would have been stressful either way. But throw in a husband who is never home, Emily's on-going mystery wheezing issues, and the small fact we're building our house - the stress has definitely escalated and it hasn't stopped. I want to talk more about the current, but I need to back track a few months first.

On June 6th, just a week after Emily's wheeze appeared, she woke up with a lazy eye. When I got her from her crib, I was like, what is wrong with your eye? But, by the end of the day I was like WHAT IS WRONG WITH YOUR EYE!? Her right eye kept falling down into the crevice by her nose so I knew something was up. At the time I wasn't sure if it was connected to her viral infection or just a coincidence it appeared when she was ill.

The next Monday we took her into her pediatrician. He told us the two (viral infection and lazy eye) were unrelated and referred us to a pediatric ophthalmologist. He also told us it wasn't a big deal if it took us a few months to get in. But, I'm sorry, that's not what I wanted to hear. When something is wrong, I'm like chop chop, let's get this taken care of. I actually got in touch with another pediatric ophthalmologist that we have a personal relationship with (outside of the state of Utah) and he said, yes! Get her in ASAP. He also had us start patching her good eye for two hours a day. She hated it and it was SO time consuming because I had to sit by her and make sure she didn't pull it off. The first few weeks we easily went through 30+ patches, but by the time our eye appointment came up, she was actually getting used to it and didn't fight me anymore.


The first that even the right abbreviation? (it will be in my posts) she told us we needed to get a MRI to rule out the 5% chance she might have a brain tumor. I wasn't thrilled about it, but she said we should definitely do it within the next 10 days. When the MRI office called to schedule they asked me if Emily had been having any breathing issues (which she had) so I said I'd actually like to take that opportunity and NOT schedule the MRI. I think they were more thinking something like pneumonia but I just really didn't see it necessary to get a scan. She had no other symptoms of a brain tumor and Mitch actually presented with lazy eye at the exact same age, 22 months. And, it's genetic.

That PO ended up leaving the office and had scheduled me with a follow-up with a different doctor so I actually just waited to get a second opinion. Hoping her breathing would improve and also that it wasn't necessary. Well, we LOVED the second doctor. She was amazing. I knew within the first minute that she was exactly who we wanted to work with. And, no, she told us a MRI wasn't necessary. So, no MRI.

However, unfortunately, at this point we'd been patching for 6 weeks and had seen no difference in Emily's lazy eye. If anything, the muscles were getting looser which meant the PO needed to operate.

surgery selfie

The day of Emily's surgery - I was so nervous. We didn't really know what to expect, but I just did my best not to envision Emily in the OR with her eyes peeled back and a doctor's scissors cutting them open (ack!) Mitch had to work and my parents insisted on coming with me. I insisted that they stay home, but in hindsight it was so good to have them there. Guess what? They knew what was best for me even though I'm an adult now. Funny how that works huh?

A friend recommended we bring Emily's favorite bear, her blankie, her cup and binkie so that's exactly what we did. I also got her a new stuffed animal, Nemo, to distract her after the surgery. When they were prepping her for the OR, she was a nervous wreck and wouldn't let anyone look at her and she was clinging to my neck for dear life when I changed her into her hospital gown. We gave her some anti-anxiety meds and within about 15 minutes she was so loooooopy. She was happy and it made me happy and little more relaxed to see her in la la land. They wheeled her away in a little red wagon as she waved and said, 'bye, c-ya.' (Which, if you know Emily, that would NEVER happen without medication.)

when the anesthesia kicked in

I felt so much better about the whole ordeal. The doctor came out about 45 minutes later and said the surgery went fantastic. Yay! What a relief. She did end up having to go in and cut muscles in both of her eyes. Essentially all she does is snip a little bit of the muscle and then stitch it back together to make it tighter.

When I went back to get her in recovery, Emily was screaming bloody murder. And, for the next hour, nothing, and I mean it, nothing, would settle her down. It was hard on her and it was hard on me. I've never seen her so upset. She just kept screaming, home, please, go home. Talk about heart wrenching.

The hospital wouldn't let us go because her oxygen levels kept dropping. But, it was because she'd hold her breath from crying and being so upset. I knew she'd be fine once we could just get her out of the environment so I begged the nurse to please let us go and finally we were able to leave. Sure enough, once we got in the elevator, she was fine. They had a big Dr. Seuss 'who' tree on the first floor and she was riveted by it so we spent a few minutes letting her calm down and see the tree. And, really, she settled right down.

The ride home was uneventful. My mom sat in the back seat with her. She was exhausted and kept her eyes closed, but other than that. She did just fine. When we got home, she was thrilled to see Addie and was even running around within minutes of walking through the door.

Her recovery went as expected. She needed pain meds for the first few days and she was a little fussy. I think I slept with her the first few nights and my parents came both days to help make sure Addie got the attention she needed, but overall it wasn't too bad.

a few days post-op

We avoided swimming the next few weeks and Emily's eye began to heal really well. Her three week follow-up, everything looked awesome. So, I was feeling great about it all. Except one thing. When we went in to Emily's three week follow-up, I said, hey doc, I could be getting paranoid, but I swear sometimes Addie's right eye looks like its drifting a bit. Can you test her and see if you notice any lazy eye? Nope. Nothing to be concerned about. She looked great.

Well, just a few weeks later, Addie woke up with a more than obvious lazy eye - right eye, same as Emily. I knew immediately when I saw it. And, guess what, it was EXACTLY three months to the day from when Emily's appeared. If we'd never DNA tested them to be identical, I think this would've been proof enough.

Over the next few days, I'll post more about Addie's lazy eye, her stressful recovery, Emily's PSTD, and then what ended happened to Emily just days after Addie got the same surgery.

Read about Addie's Surgery here. And, what happens next here.

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