On Sunday the 28th, the Pediatrician came by to do her final check-up to discharge us from the hospital when she noticed that she wasn't getting the red reflex in either of Presley's eyes. She said it could be congenital cataracts or her eyes could still just be swollen from the delivery. She gave us the information of an opthamologist to get checked the next day. After having a healthy pregnancy with no signs of anything wrong and then a smooth and easy delivery, we honestly were no where near prepared for the news we were about to get.

We were sent home from the hospital that afternoon and then at 10am the next morning, we went to see an opthamologist. She told us that Presley had cataracts in both eyes and wanted us to see a Specialist at Children's immediately. When a doctor tells you that they are going to go call a Specialist to get you in right away, you know it is not good. She left the room, and we both started bawling. When she came back in, she gave us the Specialist's information and told us best case scenario was that Presley would have cataract surgery in both eyes. Michael then asked what the worst case was. She got uncomfortable and said worst case is she cannot see. Our hearts sunk.

We then headed to Children's in Plano which I will spare you the details of this visit because the doctor had the worst bedside manner e v e r. We could not get out of there fast enough. To sum up this visit, we were told Presley's eyes were severely damaged, and she either had late stage Retinoblastoma, a dangerous cancer to the eyes, or a rare disease known as PHPV which causes blindness and has little to no treatment. She then referred us to see a Retina Specialist, but she couldn't get us into one for ten days. That was not acceptable to us, but I was so over this woman that I just wanted to get out of there.

Enter my sister, Brittany, to save the day. We texted our families on the way home from Children's that the next step was to see a Retina Specialist to look more closely at the back of her eyes to try and figure out a diagnosis and rule out cancer. Brittany works at Scottish Rite and texted me within minutes that she was reaching out to doctors there to see if they knew of any Retina Specialists. Before we even got home, a doctor at Scottish Rite had reached out to his friend, Dr. Spencer, who is a Retina Specialist in Dallas. He was more than willing to see us, however, he was out of town that week but said he could get us in to see his partner the next morning. I'm no eye expert...well now I am...but after looking at the ultrasound at Cruella's office, I knew that was not even close to what eyes were supposed to look like. Getting in to see someone so quickly was a huge relief. We just needed answers. We are forever grateful to my sister and these strangers for doing whatever they could to help us. So many good people...except Cruella of course.

First thing on Tuesday the 30th, we headed to Texas Retina in Dallas to see Dr. Abbey. Having been told your daughter could be blind to being told your daughter may have a late stage cancer, your emotions are all over the place. We were crying and praying in the waiting room that she just didn't have cancer. We knew nothing about blindness nor did we know anyone that was blind, but we could handle that. Just please don't let it be cancer. We could not lose her.

Enter Dr. Abbey. Picture early 30s, easy on the eyes, very muscular man. Oh and boy was he sharp. Within 30 seconds of looking at her eyes, he said she did not have cataracts and that he believed she had a very rare genetic disease called Familial Exudative Vitreoretinopathy (say that five times fast) also known as F.E.V.R. He did not think it was Retinoblastoma. The ultrasound then confirmed we were not facing cancer. Hallelujah. He told us that he could operate on her, but he personally did not feel comfortable given how little she was. He referred us to a Pediatric Retina Specialist in Austin who he called directly so we could get in as soon as possible. I cannot say enough good things about Dr. Abbey. He is brilliant, confident, and was good in a crisis. I felt weirdly at peace leaving his office. After having the worst experience the day before, he was the right man to deliver the news to us that Presley was in fact blind, however, he also did not want us to give up hope. God is good.

Enter Dr. Harper. We drove down to Austin the following morning, the 31st, and met with Dr. Harper. My older sister, Lauren, insisted on riding with us to help with logistics and make sure I was getting enough food and water since I did just give birth a few days before and was nursing. Sisters are something special. Dr. Harper looked at Presley's eyes and was very straight forward with us that the prognosis was not good. He agreed with Dr. Abbey that this was likely Stage 5B (the most severe) F.E.V.R. He wanted to look at her eyes under general anesthesia to see if he recommended doing surgery but was very honest with us that the chance of getting her even light perception was not good. He was extremely empathetic and even gave Michael his cell phone number to call him anytime if we had questions. He answered every time we called or quickly called us back no matter the time of day or where he was. Like I said earlier, so many good people. We scheduled the procedure for two days later on that Friday. Leaving this appointment was probably our lowest point: confirmation that she was completely blind and that the odds were not in our favor. This was such a cruel diagnosis. We were completely hopeless and heartbroken. Lauren picked us up, and we all just sat in the parking lot and cried before we gathered ourselves and headed back to Dallas.

Michael and I drove back down to Austin the following afternoon to spend the night because we had to be at the hospital at 5:45am on Friday morning. The procedure took about 30 minutes. Dr. Harper took us back into a room and told us that both retinas were completely detached in the front and back of the eyes and folded over like tissue paper. He believed this took place during my first trimester due to a bad gene. We were completely shocked and somewhat in disbelief to hear that we carried a gene capable of this. More on the genetic diagnosis to come. Given the damage, he was adamant that surgery was not a good option and he wouldn't operate on her. We were told her eyes would not grow so they would always be small and because she was the most severe case, there would be no further damage to the eyes. Hearing he did not recommend surgery broke our hearts all over again, but we trusted this man and agreed we didn't want to put our baby through trauma for no outcome. Both our parents and my sister, Brittany, came down to be with us that day in Austin as we had to stay overnight at the hospital for Presley to be monitored because she was so little. Our families have been incredible throughout this whole experience, and we really don't know how we would have made it through without them.

On Saturday, we loaded up our one week old baby and headed home to start our new normal. It had been a roller coaster of emotions, but we were ready to accept this, or so we thought...

To Be Continued