If you read the About Us page of this blog, you may have thought to yourself, “Wow, she’s got the right attitude and perspective about all of this!”
Well…the purpose of this blog is to be authentic and real and I can’t truly help someone else in a similar situation if I fast forward to the good parts and gloss over or ignore the bad ones. So I promise I won’t do that now nor in the future. The truth is there were a lot of REALLY rough days in the weeks and months after Finn’s non-diagnosis (more about the “non” to come in future posts). And I’m not naive enough to believe that there aren’t many more to come ahead – he is only 10 months old at this point, after all. We haven’t even started navigating the world of mobility, explaining to him his condition, or attempting to socialize in a world ripe with bullies, or goodness knows what else. I can only guess at this point as to the challenges for him and us ahead, but I do feel confident today that we are equipped to handle it. We have to be, right?
So, I’ll start by backing up and start from the beginning…
Finn was born on September 21st 2017, the day after my birthday. It was and always will be the greatest birthday gift I’ll ever receive. My pregnancy was boring — no complications and seamless as far as 10 months of growing a human inside of you is concerned (yes, it’s 10 months, not this ridiculous fallacy of 9!). My delivery and the days that followed made up for all of that. I was in labor for 12 hours (I’ll spare you those details) when my blood pressure spiked. I thought I was facing a C-section at that point, but in the nick of time Finn blessed us with his presence. However, the umbilical cord was wrapped around his neck twice. There was no cry. Well, other than mine. He was whisked away by a flurry of nurses and taken to the NICU for several hours. Patrick was white and I remember our doctor making sure he was not about to faint. Those several hours were excruciating and much of a blur. I only know that they were the scariest of my life. We got little information during this time and we were panicked. We finally got word about three hours later that he was breathing on his own and a rush of relief washed over us both – I think I began breathing again in that moment myself. Finally he was brought to us in our room and we were ready to set off on the journey of parenthood thinking everything was just fine. That is, until two days later when the pediatrician on call came by and said, “has anyone talked to you about Finn’s eyes?”
We had no idea what she was talking about and honestly didn’t think much of it. The way it was presented to us at the last minute (we were due to go home at any time we thought) was so flippant and nonchalant. She told us there was some blood behind the eyes, most likely from the complications from delivery and it would probably clear up on its own. What probably should have raised a red flag for us, though, was that they were not allowing us to leave the hospital because of this. They wanted to have another pediatrician take a look the next day and we would need to stay an extra night. At this point I was so ready to take my baby home, to sleep in my own bed and to just recover. So we pushed back and asked to be released anyway. They allowed us to leave late that night, but only under the condition that we’d see a specialist at Vanderbilt in a few days. Again, this also should have been a red flag but it really wasn’t for us. Our pediatrician got us in to see a specialist the following Monday. Finn was five days old.
I remember this appointment but it was also such a blur. My postpartum mind and body were a mess and I just wanted them to fix the issue with his eyes and go home. This doctor was a pediatric ophthalmologist and told us that the blood would likely dissipate on its own in a few weeks or months and to bring Finn in every week for the next few weeks for a check up. This seemed simple enough – easy peasy! But, he also wanted us to see another specialist in the meantime. Red flag number 3? Yep, ignored that one too. We came back two days later to see the second specialist, another ophthalmologist who specialized in retinal detachment. Finn was now one week old.
His eyes were dilated and pried open as I sat in the corner in shock and in a daze and eventually in tears. Thank goodness for my husband who showed nothing but strength on the outside when I had none and for my mother who held me while I sobbed and told me it would all be ok. This doctor told us that Finn had a detached retina in one eye but that the other appeared to be attached. He would likely need surgery on the one eye and we would need to see a third specialist, a retinal surgeon who specialized in retinal genetic disorders. He was apparently “THE guy” for newborns with detached retinas and renowned not just in Nashville, but with patients around the country. We needed to see him as soon as possible. This is where I think it finally began to sink in that this was not a minor issue. It took four red flags, but I was catching on. We saw the surgeon, we’ll call him Dr. S since he is sure to make many appearances in this blog, a man who would become a major part of our lives and my cell phone text history, two days later when Finn was just 9 days old.
Again, dilation, prying, screaming (him), sobbing (me). Did I mention how thankful I am for my husband and his strength? He held Finn down while I cowered in the corner and closed my eyes because I just did not want to see (ironic, huh?). Dr. S, in his calm, soothing voice delivered us the blow. Finn had bilateral retinal detachment (both eyes, not one as we previously thought) and only a 50/50 chance with surgery of ever seeing even just shadows or light. I remember sitting there motionless and him saying, “Mom, are you ok? Do you hear me?” For a moment I didn’t know he was talking to me. I’d only been a mom for less than two weeks at this point and most of it had been spent in the hospital or a doctor’s office as opposed to snuggled up bonding with my new son. I hardly identified with the word “mom.”
He proceeded to write two potential genetic disorders on a piece of paper that he was sure Finn had: Familial Exudative Vitreo Retinopathy (FEVR) or Persistent Fetal Vasculature Syndrome. To make matters worse, he said that often with these disorders there are other central nervous system issues that arise – hearing loss, lack of motor skills, delayed brain development. We would have to watch Finn closely for his first year for any signs of delays or other problems and we may not know until symptoms presented themselves. In the meantime, he recommended an MRI to rule out cancer, tumors or issues with brain development and blood work to rule out any blood disorders. I took the piece of paper in one hand and my tiny little baby in the other and left, defeated and broken.
I remember the drive home from that appointment so vividly — the three of us (me, my mom and Patrick) just sitting in complete silence, all hope gone. I didn’t even bother to Google or research the disorders in those first days. My son couldn’t see and that’s all that went through my head. My son is blind. My son may be disabled. My son will never see my face. He’ll never…you name it. The “he’ll nevers” started to take over and I was, in all honesty, devastated. The bad news and fears just kept coming. Every appointment was worse than the last and I was a wreck – I felt hopeless, guilty and empty at a time I had expected to feel hopeful, proud and complete.
We went the next day for the blood work. For any parents out there who’ve ever had to have their newborn’s blood drawn, you know how excruciating this is – I wish it upon no one. Their tiny little arm is squeezed so tight and to find a vein large enough is no easy task. We attempted this first at our pediatrician’s office and the lab tech was unable to get a vein. Instead we had to go the next day to a specialist at the hospital to do it all over again — are you detecting a trend here? I could never hear the word specialist again and it would be too soon.
I had to leave the room and in the waiting room I sobbed again. I’ll never forget the kindness of strangers. An older woman in the waiting room for her own blood draw, for who knows what reason, brought me a box of tissues, and one of the nurses came out and just gave me a huge, long hug. I won’t forget them.
The next week we took Finn for the MRI at Children’s Hospital at Vanderbilt. Finn was two weeks old now. He, by some small miracle, did not have to be put under anesthesia for this though we were told he would. I was not ready for that — not yet. I waited outside while Patrick stayed with Finn – they would only allow for one of us which was just fine with me. I felt like a coward instead of the strong mother I wanted to be, but I did not have it in me to see his tiny body inside of that large, cold, noisy machine. An hour later they came out and Patrick was completely white, but he said everything went fine. Looking back I am just so astonished by his bravery and strength for us both. I was a complete and utter wreck and I am sure he was too, but he never showed it. He held our family together. I remember at one point him rubbing my back as I cried outside in our backyard and he said, “honey, our job doesn’t change. No matter what, we just have to be the best parents we can for Finn. We just have to love, support and take care of him. That was the plan before all this and that’s still the plan. He’s going to be ok because he’s got us.” This is why I chose Patrick as my life and parenting partner – he was exactly right and that was exactly what I needed to hear to keep going.
We went back to see the Dr. S a few days later to discuss the results in person. Blood work: normal. MRI: normal. This was the first good news we’d received since Finn came into the world.* He told us that Finn needed two surgeries, what’s called a vitrectomy, in both eyes if he had any hope of light and dark perception. The process is, in my very technical terms, where a gel is inserted into the eye to try to reattach the retina to the back of the eye kind of like gluing wallpaper to a wall (I hope no doctors are reading this). Finn, at only 7lbs, needed to gain some weight before he could do the first surgery because he had to be put under anesthesia. We scheduled the first surgery for when Finn would turn 8 weeks old.
For the next four weeks I could take my baby home and just be a mom – just love him, cuddle him and pretend for a minute that everything was ok. No hospitals. No doctor’s offices. No tests. No poking and prodding. Four weeks of blissful denial. And that’s exactly what I did.
*I’d like to take a minute here at the end of this post to recognize all of the parents out there who may have gone though something like this and not gotten those normal test results. The truth is that we still don’t know what the future holds for Finn in terms of his development and whether or not other issues will arise, but for us this was a pivotal point as it ruled out all of those other serious issues our doctor had mentioned — blood disorders, tumors, cancer, and brain abnormalities. It restored some hope and began to turn the tide for me from thinking “oh my god, my son is blind” to “thank god my son is likely ONLY blind”. Perspective is everything. But it is not lost on me that we were lucky in many regards and for these other parents who aren’t dealing with “only blindness” this all may seem easy. I don’t ever want to discount the struggles they go through and how much harder it would be to be faced with multiple disabilities or health issues instead of just the one we currently know Finn has. But, again, this blog is about authenticity and vulnerability, and for me, even though this was good news, at that time I was still grieving and terrified for Finn’s future.