04.22.2015

Eleni’s Eye

Discovering EJ’s hemangioma was scary.

When EJ was about 6 weeks old I was in town at my parents house and my dad said her eyes were “bulgy.”  Of course I just took it as him being critical and called DG later that night complaining about my dad was being mean.  However, I kept staring at her eyes and by the next day I convinced myself that her left eye did bulge more than the right eye.  DG was on the desert so he wasn’t able to confirm or dispel my fears for a couple days, but when he got home he started looking at her closely and agreed that her left eye was bulging.

That Monday I called our family doctor and he (and all the other doctors in his practice) were out of town for training or something.  I felt like it was serious so I made an appointment with a family friend doctor for 11 a.m.  I actually had a court hearing scheduled, but by some stroke of luck we resolved the matter and canceled the hearing, so I was able to take EJ to the doctor myself rather than rely on my MIL.  The doctor’s first words were “this isn’t normal. You need to see a pediatrician immediately.”  She was afraid it was retinoblastoma but didn’t feel comfortable diagnosing a newborn, so she made us an appointment up north a couple hours later that day and sent me on my way.  I had time to pick up DG from the feedlot and we immediately drove to the pediatrician’s office. He was in shitty pants and boots from working cattle all morning and I was in court clothes. We looked like quite a pair.

The pediatrician took one look at EJ’s eye and said he wanted her seen by an eye doctor.  At that time I mentioned to the pediatrician that EJ’s head was starting to get flat.  He said we needed to get her into physical therapy because she has a tight neck, but didn’t say anything more about it and just pushed us out of his office and across the hall to see the eye doctor.

The eye doctor, who is an ocularplastic surgeon, was wonderful.  He immediately told us that we needed an MRI to see what was causing EJ’s eye to protrude forward. He said it could be a cancerous tumor or it could be be a benign mass, but we needed to find out ASAP. Depending on what the mass was, where and the size, we would possibly be going into surgery immediately after the MRI.  EJ went in for an MRI the following morning.  She was sedated so that she’d be completely still during the hour-long MRI, then they kept her partially sedated afterward as we waited for the MRI results.  The sedation team didn’t want to let her get completely awake because then she’d be hungry and we couldn’t let her eat if she was going into surgery.  Seeing EJ sedated and walking down the long hallway to radiology was hard, but the worst part of the day was waiting four hours after the MRI before the doctor came in to give us the results.  We traipsed down to the eye doctor’s office (it was adjacent to the hospital) with our team of four nurses and EJ on a gurney, hoping it would speed up receiving the results, but it didn’t.  While we were traipsing around the doctor’s plaza she saw a retina specialist who said her retina was fine.

Eventually the doctor finally came in and said that EJ has a hemangioma behind her eyeball, taking over the space in the eye socket.  The hemangioma is putting pressure on the optic nerve, so it needs to be treated, but doesn’t require immediate surgery.  It’s NOT cancerous!!  The doctor put her on Timolol eye drops twice a day and said it should hopefully start decreasing the size of the hemangioma.  If that didn’t work the next steps were (1) oral medication, (2) steroids surgically injected into the hemangioma and (3) surgical removal of the hemangioma.  All of those options sounded scary, but we were so thankful to have an answer and a plan, all within 24 hours of seeing the doctor for the first time.

We ended up getting a second opinion at the children’s hospital the following week from a pediatric opthamologist who confirmed that EJ has a hemangioma.  However, he didn’t think the Timolol drops were strong enough to reduce the size of such a large hemangioma that was behind the eye.  He said Timolol drops are more effective on when they are placed directly on the hemangioma (typically hemangiomas are on the body and visible, and topical treatment is possible), so he wanted EJ to get started on the oral medication called Propranolol.  Apparently both of these medicines treat high blood pressure and it was incidentally discovered that they can shrink hemangiomas too.  Anyway, because EJ was so young when we started the Propranolol (only 8 weeks old!), we had to stay overnight in the hospital so they could monitor her vitals and make sure it didn’t cause her blood pressure to go too low.  That hospital stay was less traumatic because there weren’t any IVs involved and all of the doctors who came in to check on EJ were very encouraging and told us how well Propranolol usually works on hemangiomas.

As of today we’ve been on propranolol for 4 weeks.  We went to back to the pediatric ophthalmologist last Friday and he said that EJ’s eyelid still looked swollen and her left eye was still protruding about 2-3 mm forward, but it hadn’t gotten worse.  He looked inside her eyes and said that the optic nerve is still okay too so we’re sticking with Propranolol for another 6 weeks before we go back for another check-up.  I keep thinking her eye does look better, but maybe I’m just biased and full of hope.

IMG_0932

This picture is from the night before we first took EJ to the doctor. You probably wouldn’t notice that her left eye looks bigger if I didn’t tell you and you didn’t stare at it, but it does! Looking back through pictures I can now see how it got ever so slightly bigger over time.

This picture is from today. EJ's left eyelid still looks pretty swollen and there's not much of a difference.

This picture is from today. EJ’s left eyelid still looks pretty swollen and there’s not much of a difference.

Comments

  1. Oh my gosh how scary! Poor thing. {Side note — she is so cute!}

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