R is only three weeks old and will soon be in surgery.
R was born in early July. As soon as both of R's eyes opened I knew something was different. The right eye had a strange white circle reflection. It almost shone in the dim light. When we moved from the birthing room to the recovery room and the reflection remained, I began googling what it could mean. I flagged down a nurse immediately and the pediatrician was asked to to check R's eyes in the morning.
From there we had a flurry of urgent appointments. We discovered R has Persistent Fetal Vasculature (PFV) in both eyes. The parts that were supposed to whither after building R's eyes, did not. The doctor said having it in both eyes is like being struck by lightning twice. The right eye is significantly worse off with fewer structures dissolved. It is smaller than the left eye by a medically significant amount and has a thick white cataract obscuring the back of R's eye. Surgery is needed urgently in order to keep the right eye in communication with the brain so that vision may be saved. After surgery R will no longer have a lens in the right eye so R will have to wear a contact. To encourage the brain to keep in communication with the eye that cannot see as clearly, R will need to do patch therapy for hours every day. This is going to be a lifetime process but hopefully it gives R useful vision.
R will only be 4 weeks old at the time of surgery (which happens in the first week of August). The surgery will last about three hours. Because R is so little we will have to stay for observation after the surgery is complete. I cannot imagine passing off a baby so small to be taken to surgery, but this is our best chance at saving some eyesight.
Cases like this often requires multiple surgeries, and Danny and Kate (who returned to substitute teaching in the spring) will both have to miss work in order to be there for the surgery and some of the trainings and therapy techniques. These funds will help make up for the lost work, help provide easy meals when things are hectic, and cover some of the medical costs that insurance and such cannot or will not cover.
Doctors say that the long view of things look really good for R but admit that this is going to take a lot of active hands-on care and hard work. We are very fortunate to have a great medical team behind us and a truly incredible network of family and friends. We appreciate everyone who has checked in on us and asked about the kids and the baby.
If you have the urge and ability to help financially, please consider donating or sharing. You can go through here or reach out to Danny and Kate directly. All help, thoughts, prayers, and "thinking of you"s are greatly appreciated.