That ten minute ride to the children’s hospital felt like days going by. All the thoughts racing through my head, trying not to cry, trying to be strong for Jim. We parked in the parking garage and headed inside.
Once we arrived on the correct floor, we checked in and were instructed to wait. More sitting and waiting. Not that we had any magical powers that would make Scarlett better but neither of us do well with not being able to at least touch her. Just let her know she was not alone. I’m sure it is the same with any parent in a similar situation. Finally, our name was called. We were taken back through a maze of clear, plastic bubble looking bassinets. All these little bodies were hooked up to all kinds of monitors. I was mentally preparing myself for the worst, even though Scarlett was stable when she left to be transported. In the very back of the critical NICU, was a tiny side room where Scarlett was. She was just fine. They still had her hooked up to the same kind of monitors. They explained that they were going to do another chest x-ray, monitor her and go from there. The doctor also informed us that they would be getting a pediatric ophthalmologist to come in and look at her eye. We were assured that she was in good hands and that it would be a while for them to get all the tests done that they had ordered. We made the decision to go home, eat and try to rest. When we got home, I collapsed into bed but was restless.
A few hours later, off we went back to the hospital. We get to the check in window and let them know our last name. That’s when the lady says, “Are you sure you are in the right place?” We look at her completely confused and promptly ask where our baby is, if she is not where we left her. It did not take her long to find out that Scarlett had been moved to the non-critical NICU in the adjoining hospital affiliated with the children’s hospital. They moved our child without notifying us at all. I was infuriated as we quickly made our way to where Scarlett was. When we checked into the family center, we let the receptionist know as politely as we could, that we wanted a supervisor to come talk to Jim due to the situation at hand. I was so angry that they had not even called us that I did not want to be the one to talk to them. I just wanted to see our child with my own eyes. They sent out a nurse to walk us through the scrub in procedures that had to be followed in the unit and led the way to yet another nursery full of tiny babies.
Once again, Scarlett was placed in my arms and everything else melted away. Until a lady walked up and introduced herself as nursing manager. I wanted to yell and tell this lady what an absolute lack of concern they had… but I was in a NICU full of little, sick babies. So I listened to her apologize and her story behind it. Now it’s neither here nor there, but when a more critical case needed a spot in the critical nursery, they moved Scarlett as she was the most stable baby in there. We were informed that it would be at least one day before we would see the ophthalmologist. The next two days were much of the same. Watching, waiting, and loving on our baby girl.
We got up early that Tuesday morning so that we could be sure that we were there when the ophthalmologist came in. They couldn’t give us an exact time. To us, since Scarlett was pretty stable at this point, was the most important thing that we needed to get done. At last, a pretty Indian woman came in with a student and introduced herself as Dr. Rama. She proceeded to look Scarlett over and used these tiny forcep looking things to hold Scarlett’s eye lids open so that she could do a proper exam. Even though we were both squeamish, I had to watch even though I could not see very well over all the people around Scarlett’s bassinet. When she was done, Dr. Rama informed us that she would be back in a little bit as she needed to get an ultrasound of the eye to check a few things. I have to say Dr. Rama has a good poker face or maybe I was just too tired to see any signs of concern at the time. Dr. Rama came back an hour or so later, entourage still in hand. She had the tiniest little wand that she was using for the ultrasound. She looked at a few different things. She saved a few screenshots. The next moment is one I will never forget.
She turned to Jim and I and explained that Scarlett has some congenital conditions. She explained that they were Persistent Hyperplastic Primary Vitreous, Micropthalmia, and a cataract. She then turned to us, with a look of compassion, as she explained that what she was checking for with the ultrasound confirmed her suspicion. Due to the PHPV and the way the cataract was placed, Scarlett was going to be blind in that eye with no chance of vision. My heart stopped and even though I was trying my best I began to cry. Jim was holding onto my shoulders from behind. The next thing I know, Scarlett’s nurse’s hand is on my arm and Dr Rama has my hand. She looked me right in the eye and said, “This will not stop her from doing anything she wants. The only things that she will not be able to do are fly planes or drive a bus. Your baby will be just fine.” Dr. Rama also explained that there was one additional thing she was looking for on the ultrasound. Thankfully, it was not there. There is a cancer that is common with these conditions and she wanted to make sure she could give us an answer on that before informing us of Scarlett’s conditions. She also said that Scarlett would require a prosthetic eye.
Scarlett was released the very next day. We got to take our baby home on her one week birthday. We were full of uncertainty, not sure what next steps to take. All we knew was that we had a beautiful baby with an extra tiny eye that could not see.