January 24th, 2018. The date is burned into my head like the day she was born. We woke up on January 24th like any other day. I remember this morning so vividly because I had just put our 2 month old baby in the CUTEST Gymboree corduroys with a purple polar bear onesie – and yes, it even had a matching headband. I got her to take a nap BY HERSELF which was a huge feat for me 2 months post-pardem. Last minute, my mom had decided to come with me to our first ever optomology appointment. Not for any particular reason. We both knew something was off about Olivia’s eye but we expected them to confirm our suspicions she had a really lazy eye and would need glasses. So my mom was really just coming along to give me a hand with the car seat and watch the baby when I needed to fill out paper work. In pure newborn fashion – and this is the reason I remember that gorgeous outfit so vividly on this exact day – Olivia blew out her diaper right as we were walking out the door. My mom and I tag teamed giving her the quickest wipe down, new diaper, outfit change known to man, and got in the car on our way to a seemingly routine appointment. Little did we know, huh?
We went into the doctors office and I sat in the optomologist chair with such a nieve and giant smile on my face as the doctor looked into Olivia’s eyes. All of a sudden, the mood in the room changed from light and bubbly to heavy and stiff. The doctor took a deep breath and told me that she could see that Olivia had a cataract in her affected eye. I remember thinking to myself…WHAT?! Only people over the age of 80 get cataracts?! She explained to me, using a fancy diagram on the wall, that the cataract was like a film over her eye – that was blocking light from coming in. She explained that Olivia was unable to see through where the eye was blocked. She said the cataract was most likely caused by something called Persistent Hyperplastic Primary Vitreous also known as Persistent Fetal Vasculature and that this was extremely rare. The doctor left the room to get whatever pamphlet they had hidden away, covered in dust in the back of a forgotten filing cabiniet because she had never seen a child with this condition in her career.
This is where I thank God my mom had decided to come with me. She is very intuitive and must have known that we would need her on this specific day. My mind went completely black. As the door closed, I broke down into the deepest cry I have ever done. I squeezed my daughter and cried. At some point, my mom came up and took Olivia and I in an embrace I will forever be grateful for because it kept me from falling to the ground. I couldn’t believe what we had thought was a routine appointment had just turned our lives upside down. I called my husband as my mom cradled the baby and told him to get over to the doctors right away. He dropped everything and was there before the doctor returned with the informational packets – he works as a teacher at the school that was conveniently located down the road from this office. When the doctor came back in, she suggested we get a second opinion from one of her colleagues to be sure of the diagnosis. She left us with the next doctor we would be heading to see, a warning that surgery may be necessary and a request for us to come back and tell her how it all goes.
My husband and I hugged our little girl the tightest we ever had before. We thanked God that the little black spot the pediatrician had seen wasn’t cancer and that we finally had answers to why our baby’s eye wouldn’t focus straight on. We were going home with heavy hearts and tear stained faces but a plan moving forward. My mom drove us home and within the hour I had another appointment booked with the cataract specialist – for 2 hours later! My husband pulled into the driveway and jumped into my car to take the hour trek to Stratford. As you know from reading the blog 🙂 the next doctor confirmed that Olivia did indeed have PFV that caused her to develop a cataract in her Nemo eye.
From there, we went home ate so much ice cream (this was pre-dairy allergy), drank some wine and found comfort in each other. Our lives had changed forever. For some reason, the two of us still had hope this was all a nightmare and that when we got to the retina specialist in New York a couple days later, he would say Olivia was all better. We now know that was not what happened, but we found solace in hoping for the best.
Writing about how I felt one year ago has brought back how dark this day was for my family. We had just started our journey as parents and were thrust into a situation that even seasoned parents would be overwhelmed by. Looking back, I am so proud of how we handled this day. For as dark as it was, we never turned our back on each other. We took care of our little girl while also taking care of our marriage. When I started thinking that I caused Olivia to have PFV (as every PFV mom thinks at one point in diagnosis even though its completely ridiculous) my husband was there to remind me that there was no way that could be. When he would crumble and cry at the thought of putting our tiny two month old under anesthesia, I would pick him up and remind him it would be okay. It’s true that you never know how you will react in a crisis until you are dealt one – but ill tell you, I’m proud of who we were, how we dealt with impossible odds and how we lifted each other up.
Despite this dark day, I think about how far we have come. I would NEVER have expected one year ago that Olivia would be thriving the way that she is. I am shocked and impressed every day to see how she is crushing her developmental milestones, patched or not. We have gone through two major eye surgeries, constant three hour trips to New York, three hotel stays, countless hours of patching, multiple different eye drops and too many long nights to count – but we made it out the other side, together. We are only in the beginning of this journey but with these two by my side, and this tribe we have backing us – I know, we will just keep patching.