Prosthetic Eye, Here We Come
Life with a baby is hectic. I would love to say it is so amazing and wonderful all the time… but that’s not the truth. It has its moments of wonder, love, and warm fuzzy feelings. It also has dirty diapers, mountains of laundry and, if you have a child with a special need, lots of appointments. We love sharing our journey and wanted to give you all an update on what exactly Scarlett has been up to!
In March, we had her exam under anesthesia where we learned that everything is going well with her left eye. She does need a little prescription but Dr Rama expects her to grow out of it. Dr Rama also confirmed that her micro eye is indeed getting smaller. This is something she told us to expect. She has told us that Scarlett’s condition is one of the most severe she has seen. This was one of the most stressful mornings I have had since she was in the NICU. To hand her over, was hard. I have major, major respect for the moms and dads who have had their little one go through eye surgery (or any surgery). I could not imagine after just getting a teeny taste of what it could be like handing your baby over for hours.
In April, we began the steps that would lead us to Scarlett’s first painted prosthetic eye. This is a process that we did not anticipate starting until August. It was a very welcome surprise. Our first appointment, April 12th, Scarlett received her next size conformer. In addition to Kathy, our ocularist, we see her son, Zach. It is very much a family business. Since we have mostly seen Kathy, she had us give Zach the background on Scarlett. This was basically a normal appointment for us. In and out in 30-40 minutes. We got to schedule two more appointments over the next four weeks. I should explain here that our ocularist is based out of Indianapolis and comes to Louisville every other week. If we lived closer, this process would take less time.
It is now April 25th, we are back with Kathy. This time she is seeing just how Scarlett’s current conformer is fitting. She then takes her conformer out and starts to draw the basic shape of the iris onto the conformer. I have become so used to seeing my baby with her clear conformer that it is strange to me. This is the point where I get emotional. I realize that I love her just as she is with her clear shell. I quickly remind myself that, ultimately, this is what is best for her. This will be our new normal. About this time, Kathy starts to build it up the conformer with a waxy type material. Adding a stem where the iris will be. While I am all in my mom feelings, Kathy is making sure that the placement of the iris is exactly where it will need to be on the finished prosthetic. She brings in Zach to have him look as well. Once they agree, Zach takes a quick mold of the conformer with the build up and stem. Once Scarlett’s conformer is all cleaned off, back in it goes. For the next two weeks, I struggle with going from being excited to not wanting her to have anything but a clear shell.
Finally, delivery day is here. Our appointment is not until two in the afternoon. I am on pins and needles. So excited for this change. Scarlett and I arrive almost an hour early. I meet another mom who’s three-year old had a prosthetic. It was so nice to talk with someone face to face who understands what you are going through. It also helped to pass the time. Finally, Zach is in the waiting area telling me to come on back. To say I was nervous was an understatement… however, I was equally excited.
Here is where I learn just how long the process takes. First, Kathy places the glossy top shell onto the shell with the iris and checks the fit. It goes in and out like a glove. A snug glove but that is what we want. Now, comes the color match game. Initially, it was too dark, so Kathy went to working her magic to lighten it up. She would paint, hold it up to Scarlett, and then repeat. Finally, she was happy with the color and we got an hour break. Thank goodness! I was starving. With everything going on, I had not had anything to eat all day. We were to be back at 4:30. I sent Jim a text and let him know to come see us on his way home. He was upset that he had not been able to take off work to join our adventure. By the time he arrived, we were just going back. I held Scarlett while Kathy placed her prosthetic eye. Once it was in and Kathy was satisfied. I turned Scarlett toward Jim. His smile said it all. I finally turned her around so that I could see her. This was my baby, not the way I had come to know her, but she was still my girl. Just over three and a half hours and we were finally done.
I would be lying if I said that this was a truly happy day. We had some bumps in the road due to our insurance company and did not get to go home with the prosthetic. However, many calls were made between Jim and our insurance, Kathy’s office and our insurance, and Kathy’s office and us. This is a story for another day, but know we were able to get her prosthetic first thing the next morning. We are grateful to have such an amazing ocularist who will go to bat just as hard as we do with the insurance company.
Also, I am still not over my momma feels. I miss being able to see her micro eye and cataract. Call me crazy but I love looking at her lucky eye (think Nemo’s lucky fin). To me, it is beautiful and shows me how much of a fighter she is. I find myself cleaning her prosthetic once a week just to see it.