After discovering Arthur’s condition and existing cataract, the next step was to schedule his lensectomy. We discussed the process and unknowns before going in, which involved a lengthy appointment and dilated examination.
I’ve never had a dilated exam to compare, but doing the process with a small month-old infant was probably easier than examining a toddler. The ophthalmologist had an exam table to lay him flat and swaddles to keep him contained. It still wasn’t easy and I ended up having to leave the room, tearing up, while my husband stayed with Arthur. I took everything the hardest with the loud baby cries—he wasn’t in pain—but the combination of postpartum hormones and hearing my little newborn cry just did me in. In fact, 6 months later, I still leave the room at each examination. Don’t be embarrassed if you need to, too.
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| Calming down during an appointment after an examination |
After the examination we discussed the surgery details and met the retina specialist that our ophthalmologist wanted to keep on call through the duration of the surgery. With such a large and dense cataract, the doctor couldn’t get any look at the retina. Since she didn’t know exactly what she was dealing with until she could get inside the eye, she made sure to explain the chance of pulling in the retina specialist to tend to any abnormalities or detached retina. We also discussed the common conditions of PHPV/PFV in that the stalk in the eye may still be fully formed and need to be removed. There was a lot of unknown, but the one thing we did know was that surgery was imperative between 6 and 8 weeks of age in order to create the brain connection to the eye to establish vision. We trusted our ophthalmologist, did extensive research, and planned for tentative surgery.
We never had previous experience with surgery scheduling, and that process struck us by surprise. I ended up calling the office to check on the decision weekly. The month of waiting for surgery took me back to my time during late-pregnancy—pacing around and nesting, making sure every little detail was as prepared as possible. Once we finally had a date confirmed (it took long to coordinate between our ophthalmologist and retina specialist) we found out that it’s standard with surgery scheduling to not know the operating time until the day before surgery. The youngest babies usually are operated on first in the morning. We didn’t get in until mid-day.
Surgery preparation involved bathing the night before and 4 hours of fasting—a long time for a little baby trying to pack on the pounds and earn his Michelin Man rolls. The scheduler asked us to arrive two hours earlier than the scheduled operation time and we were dreading the idea of waking and fussing with a fasting newborn. It was only a small fraction of what we weren’t looking forward to, though.
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| Waiting with our fasting baby before surgery |
Despite all of the preparations, conversations, and appointments, nothing makes you feel ready to send your child off to surgery. There was a long debate over if it was worth doing anything at all—we didn’t want to put him under anesthesia and cause him any pain. After a few long-winded, late-night conversations, we made the individual choice that we felt we needed to give Arthur every chance we could to establish his vision. We were going to fight for his sight.