Today, we took our 7th trip to Great Neck, New York with our little warrior! Olivia HATES the car – I know, what baby hates the car?! – but we take the three hour drive every three months because our retina surgeon is the best doctor we have ever met. He alone is worth the screaming baby, Moana soundtrack on repeat and endless amounts of gas. When we first went to this office back in January of this year, we were crushed. This was the place where we found out our little, beautiful girl would need to go under anesthesia. We were told that Olivia’s retina had detached – yes its as scary as it sounds! Like many others with Olivia’s condition, children with PFV run at a very high risk for retinal detachment due to the ‘stalk’ that was not severed in utero. He looked at our tear soaked, terrified faces and explained that he would put Olivia under, go into her tiny eye and sever the stalk and reattach the retina. This was the scariest information we had been told but I am going to be really honest, our doctor was so un-phased, calm and confident, we left the appointment with a sense of confidence ourselves.
By the time surgery day came, we trusted this doctor with our most precious cargo and he did not disappoint. Not only did our doctor successfully remove the stalk and begin the process of reattaching her retina, he removed the cataract that was blocking her vision and left what he called a ‘capsule’ making Olivia a candidate to one day receive an Intra Ocular Lens (this would be a contact lens that is surgically implanted). Not only did he give us our daughter back in the condition that we left her but rather, he went above and beyond!
So needless to say, we take the three-hour drive, every three months to see the man that saved our daughter’s eye. We wait in the waiting room for the chance to see our favorite doctor for five minutes – just enough time for him to check out Olivia’s little nemo eye and give us the latest on how its doing. And the most amazing thing about these appointments is Olivia’s demeanor with this doctor. With others, Olivia is a bit fussy – who wouldn’t be with a bright light shining in their eye? – She gets irritated snuggles into my arms to avoid the doctor poking at her eye. With this doctor, Olivia sits on my lap, still and silent, looking into the eyes of this amazing man. She doesn’t move but rather listens to the direction of his voice and moves her gaze in the way the doctor intends. We are in and out of that room in record time because just like us, Olivia feels most comfortable with this amazing doctor.
Today we went to New York for a retina check up before Olivia’s strabismus surgery next week. Not only was Olivia cleared for her surgery, but we were informed that her retina has FULLY reattached! Her eye is healthy and pressures were in the normal range. With the year we’ve had, this good news couldn’t have come at a better time. We will still be driving up to see our favorite doctor (now every four months – yay!) but for now, we will just keep patching.
The day we had been waiting for was finally here! Today was the day Olivia would have her retina re-attached and the stalk caused by her PFV would be clipped. The doctor would also check to see how big Olivia’s cataract was in order to determine whether to remove it during this procedure or to wait and do that at a later date.
For babies as young as Olivia (3 months at the time) they are not allowed to eat 5 hours before the procedure. Of course as a new momma that is nursing her baby, I was extremely anxious that Olivia would not only be scared to be in a new place with a bunch of doctors but that she would also be so hungry with no way to soothe. So I ended up setting my alarm for 2:30am in order to get her one last feeding before her 8am appointment. It worked out really well and there were no last minute hungry cries to be heard J. We also had to continue our vigorous drops schedule for Olivia’s eye.
When we arrived at the hospital, they led us into waiting room after waiting room until we were ushered into her final patient room. She was given the cutest little hospital gown that she swam in – but that only increased her adorable factor. We stood in that room and hugged our baby girl tighter than we ever had before. My husband and I were each other’s rock when our minds would wonder to that negative headspace. Our biggest fear – as it is whenever anesthesia is present – was what if she doesn’t wake up? We were afraid of a number of complications we were told could arise when doing such a precise surgery on a very small eyeball. We read horror stories but to every one-horror story were five success stories and that’s what we tried to remember. So we kept hugging our baby, sending each other reassuring smiles and playing a singing Pooh bear her favorite song over and over and over again.
When the doctor came in to take Olivia in for surgery he made sure we understood everything that was about to happen and what his expected result was. He also informed us that he would be measuring her cataract once he was in her eye. If the cataract exceeded a certain number, then he would attempt to remove it. This would mean removing her lens but would give her the best chance to gain vision in her nemo eye. There are few moments in life that are burned into your memory. The second the nurse took my baby back for surgery and I had to walk away and into the waiting room was the hardest moment of my entire life. We waited in the center of the hospital for what felt like an eternity. About 2 hours later, the doctor came out and gave us the news – Olivia was a ROCKSTAR. She did amazing! She took the anesthesia really well and he was able to sever the stalk in order to reattach her retina and ended up removing the cataract and lens without complication. After taking a couple huge deep breaths and signs of relief, we walked back to see our gorgeous girl wake up.
As soon as Olivia woke up, I was able to hold and nurse her. She had lots of bandages on her eye and a shield to protect it. She kept both eyes closed the majority of the time but I would feel her squeeze me ever so often as if to remind my husband and I that she was okay. We were released from the hospital and headed back to the hotel for some much needed rest. For anyone going through a similar situation, don’t panic if your baby doesn’t open their good eye right away. We were terrified and so confused as to why she wouldn’t open her good eye after surgery. In fact, it took her about 5 hours to open her good eye while the nemo was guarded. Looking back, it makes sense that she was tired, her eyes were most likely sore and it was probably odd to be unable to open one of her eyes and easier to just keep both of them closed. We stayed over night one more time because after surgery the patient is required to be seen in post op by the surgeon the next day to be sure that everything looks good! We got through the night with Olivia on my chest and very little sleep but received a clean bill of health the next morning. We made it through the hardest day of our lives, together. I couldn’t have gotten through this without my amazing, supportive husband and strong warrior of a daughter. This experience showed me how strong we truly are. We had no idea that new eye adventure we were about to embark on but after getting through this, we knew we could take on anything.
When we left the retina specialist, our hearts were in our throats. As soon as we got home, we took a few – or a little more than a few – deep breaths and hugged our beautiful girl as tight as we could. We were in complete shock that our 3-month-old daughter would have to undergo a complicated eye surgery in a few short weeks. We didn’t realize it then, but the time between the diagnosis appointment and when we found out a surgery date, was the best time we spent together. We both knew that the surgery was coming, but without a set date, it didn’t seem entirely real or set in stone. When I got the call a week later with a surgery date, my stomach dropped and all of a sudden, the reality of what was to come finally hit home. We had to come to terms with the fact that everything was about to change.
The surgery coordinator set up all of the details for us regarding the surgery itself over the phone. She informed us that babies are usually put on the schedule first thing in the morning due to the fact that she is not allowed to eat for 5 hours before she went into surgery. During this call, we made the pre-surgical appointment and set the surgery date. A few days later, we headed up to NY for the pre surgery appointment. This appointment was not as scary as we made it out to be in our heads. The nurses did a basic check up on Olivia to be sure she was healthy and ready to under go the anesthesia within the week. They checked all of her vitals and prepped us regarding what to expect. Olivia was cleared and ready for her surgery in a few days.
The day before Olivia’s surgery we started a diligent eye drop schedule. This was the first time we had ever had to put eye drops into her eyes and there was a definite learning curve. For any parent out there reading this, please know that putting eye drops in a baby’s eye is so hard! You are not the only one struggling – it is near impossible! Lucky for that baby, we as parents are determined to get those drops in their eyes no matter what. We found putting the drop in the inner corner of Olivia’s eye and then massaging the bottom of her eye to get her to blink the drops in was the best way to get the medicine in there. When she blinks, we could see the drop disappear into her eye and now we know from experience, her eye got everything it needed going this route.
Since we live 3 hours away from the surgeon, we decided as a family to get a hotel up near the hospital. This worked out really well for us because the surgery was scheduled so early in the morning and the surgeon already scheduled a follow up appointment the next day at his office. We also found it very reassuring to be near the hospital just in case we had any questions or concerns post op. That night in the hotel was the longest night of my life. We sat in bed watching Beat Bobby Flay on the Food Network, trying to distract our minds from what was to come.