ROP

The Eyes Have It

/ bperica / 1 Comment

London’s first ROP (retinopathy of prematurity) exam was around 8 weeks after she was born. From the first time someone mentioned the ROP exam, they made it sound like something that we, as parents, would not want to stick around for. Kate always heeded that advice. I did not.

After London’s eye exams revealed Stage 2 ROP, I knew avoiding them was going to be impossible. They were happening once a week and, as with every other procedure, I decided that I wanted to be with London through it all. I did not want to shield myself from what she was enduring. If I did not watch the exam, I would feel out of touch with her care and progress.

When it was time for London’s next exam, I had just put her back into her isolette. I informed the doctor that I was going to stay. “Okay, stay seated, because I’ve had a dad pass out on me before,” she said.

I stayed in the chair even though I was confident I could stand up and get a better view without passing out and hitting my head on the floor.

The nurse that day gave London some sugar water or “sweeties”, designed to distract London from the imminent eye invasion. When the nurse had an arm on each side of London and her hands holding London’s head firmly in place, the doctor placed the miniature eye speculum. London squirmed right away, but she didn’t start wailing until the doc was looking in her eyes. I had never heard London cry like that.

Now, having watched so many eye exams, the noise London makes when her eyes are being examined is the hardest part of being there. The speculum and the probing with other tools looks quite unpleasant, but I promise you it is the noise that is the worst. It is a traumatic enough burst of screaming that an adult might only make it if they were being slowly stabbed again and again.

It is nearly enough torture for the parent to hear as it is for the baby to endure. Once I heard her scream like that I knew the sound would be with me forever. But, as I sat there and watched eye exam after eye exam, I tried to absorb as much of London’s pain and fright as possible. The eye exams became a unique way for London and I to bond.

As soon as the eye exams were over, the nurse would hand London back to me. She would immediately stop crying, look up at me, and immediately rest her head against my chest.

Last week we endured one last ROP exam together. If London had to have another exam I am not sure how the doc and her assistant would be able to contain London’s thrashing and kicking. One last time I attempted to share in the pain with London by being by her side and one last time I had the privilege of comforting her as soon as the speculum was pulled away.

For Your Eyes Only

/ bperica / 1 Comment

The hospital handout we received on Retinopathy of Prematurity (ROP) after London received the diagnosis describes it this way:

The retina is the inner lining of the eye that receives light and turns it into visual messages that are sent to the brain. If one thinks of the eye as being like a camera, the retina functions as the film. Blood vessels that supply the retina are one of the last structures of the eye to mature; they have barely completed growing when a full-term baby is born. This means that a premature infant’s retina is not yet completely developed. For reasons not yet fully understood, the blood vessels in the immature part of the retina may develop abnormally in some premature infants. This is called ROP.

Every NICU employee did a fabulous job explaining this to us. However, as a parent, this little bit about ROP tends to stick with you more than anything else:

In the most severe cases, the abnormal blood vessels form scar tissues, which pull the retina out of its normal position in the back of the eye. This problem results in severe loss of vision of blindness. Fortunately, this occurs only rarely and laser treatment can often prevent the retina from detaching.

That “fortunately” is so reassuring. If you aren’t catching my drift, I am being sarcastic. Perhaps, if ROP was the only thing we had to worry about while London was in the NICU, the “fortunately” would have been more promising to us, but it was hard to take any comfort in the prognosis of ROP after we were already dealing with chronic lung disease, fluctuating sodium levels, and a brain hemorrhage.

A week or two after London’s ROP diagnosis I wrote an email update to friends and family:

IMG_3145

Shielding her eyes from the bright lights. This photo was taken on the day London decided she no longer wanted to be vented.

Kate and I found out today that London will most likely need glasses throughout her life. There are worse problems to deal with, but I haven’t taken that very well. Glasses are just another thing on her poor face, which has never been truly free of clutter.

We received many responses, but a few stood out. These were the responses that assured us that glasses are not really a big deal and they do not look bad. I know these people were trying to comfort us, but I don’t remember any comfort to be found in their responses. What does stand out about that moment was the realization that these people will never fully understand what London, Kate and I are going through because their babies did not have the same start to life as London. I thought I had made it clear in the email why I did not like the idea of glasses, but let me try again…

As a parent, no matter how long your child is in the NICU, you long for a time when that child won’t need some medical accoutrements to stay alive, to function normally. You crave a purity for your child, the purity many full-term babies get to have, the purity of a perfectly functioning, little body with no attachments, IV lines, or patches on the face. You want your child to experience this and you want to look upon your child when they do. When we heard glasses were a possibility, we were moved further away from that purity. After months in the NICU, something as simple as glasses can be a heavy burden. That’s why I did not take the news well.