Just over three pounds, and counting.
Today Avie had her first eye exam. When we arrived at the hospital, somewhat earlier than usual as we had to take Maddie to school and therefore were already fairly close to the hospital, we saw that there was a bright yellow blanket draped over her isolette. Robin and I both went into defensive mode, slightly afraid that she had been moved again, but the sign on the monitor was the same and so we smiled. Lifting the blanket we noticed that there was a new blanket inside as well. It was soon evident to us who her nurse for the day was-a wonderful, caring soul who tries to make our NICU experience more similar to real life.
But then we saw the eye shields. For those who have never witnessed the spectacle that is the NICU, imagine a piece of foam that is cut to the rough shape of glasses with a velcro strap that fastens in the back of the head-eye shields. We had not seen these on Avie since right after her eyes opened and the phototherapy lights were removed from her isolette. We were obviously confused. It was then explained to us that Avie was going to have her first eye exam and that drops had been administered to dilate her pupils. For anyone that has never had their pupils dilated, it makes one’s eyes very sensitive to light so the shields were put in place to help comfort her. Before long it was Avery’s turn. I threw everything that I had (verbally) at the doctor who was going to conduct the exam. (I could have found a great many things to throw physically, and thought of doing so, but feared the repercussions of such, perceivably, hostile actions.)
“I’ve already done it and she is 20/20,” I was trying to stop him.
“That’s not what we’re looking for,” he replied with a somewhat Steve Buscemi looking smile. He then told me that they were checking for R.O.P. I’ll have to learn more about this one myself, but I then said, “I already checked for that, too. She’s good.” They weren’t buying it at all and asked if we wanted to stay to witness the exam. We couldn’t stand to watch, so Robin and I made our way to the waiting area.
Within minutes we were advised by the receptionist that the exam was over and we could go back in. At the isolette we were told that Avie appeared to be okay. She of course was unhappy with having her eyes forced open, and fought the nurse’s hands, but most importantly her eyes seemed to be okay for the time being. As is the world with preemies, this can all change tomorrow, but for now we’re going to run with what we’ve received.
While visiting with Avery, though, we heard the cries of the other babies that were going through the exams, including another baby girl who is right next to Avie, who also has a butterfly next to her name. As was mentioned by one of the readers of this blog who also lost a twin during their stay in the same NICU, a butterfly is a symbol of the loss and is placed on the bed or door of the baby that has lost a sibling. Butterflies have taken a new meaning for us. These cries became too much for us to handle so we decided to leave.
While we were at home I received a phone call from a true warrior, a mother of twins who experienced many of the same things that Robin did with pre-term labor and thus had her twins delivered early. This family spent time in a NICU and has gone through many of the same worst case scenario discussions that we have. But on top of that she, as I learned today, broke her leg at fourteen weeks of gestation and didn’t even know until then that she was having twins, then spent time on bed rest for the leg injury before being placed back on bed rest after learning that she was in pre-term labor. For many people all of this bed rest would seem wonderful, but for an active duty fighter pilot who, based on her career, has to keep her self in shape all of the time I’m sure it was absolute torture. Suddenly my hand being re-casted for another two weeks seems insignificant.
This super-woman explained to me that she had taken part in the remembrance of a young boy, a twin, who was lost to cancer and that during the ceremony which spanned the globe, blue and gold balloons were sent to the skies with a note attached so that people who found the balloons would also be able to find the story of the young boy by the website his family had created. In honor of Sienna Grace this wonderful soul also released a pink balloon, with our website attached, to the sky. I am honored that she would be so thoughtful as to do such a thing and then send me pictures of the event.
As Avery Rose continues to fight her way through these tough times I ask that all of you who read this not only continue to pray for her but also for all of the other babies who are in the fights of (for) their lives. Francessca, Andrew, Andrey, Isaiah, Nathaniel, Star-Lilly, Donovan, Layla, and Riley are just a few names that come to mind. In our NICU alone there are approximately ninety-five others. And please continue to pray for the families of these babies, families who go through the worst of times all the while trying to maintain some semblance of normalcy. Finally I ask that all of you with healthy children never take the lives of your babies for granted and that those of you who continue to fight in the NICU never quit.
Avery is now just over three pounds and counting. She continues her fight.