May 15, 2014: The beginning of seeing...

May 15, 2014: The beginning to seeing...

Raeya was scheduled for her first cornea transplant. For the days and weeks that led up to her surgery we couldn't help but feel scared about the rejection possibilities, anxious about what her response would be and excited for her to finally be able to really see. 

She was scheduled to go into the OR at 2:00 pm. She was unable to eat or drink anything until she had come out of surgery.   Now for anyone else this would be a nuisance.  Your stomach begins to make those recognizable gurgling noises...you notice the people sitting near you nibble on a snack and licking and smacking their lips together...
For our four year old...this must have been unbearable...
On an everyday basis if she does not get that snack that she insist on that very second she feels she may shrivel up and die. But on this day, our four year old only questioned once why she was unable to eat. After explaining to her the side effects, just as I would any patient I would take care of, she appeared satisfied with the explanation and never asked again. 
My husband and I made sure that we did not eat without her. Which I think was more difficult on my part; being two months pregnant and dealing with the oh-so-wonderful "morning" sickness. We kept her and ourselves entertained while we watched others get ready to go into their procedures...

 Finally at 4:00 p.m., Raeya was brought into the prep room where she was gowned, vitals assessed, monitors applied and excited about the rubber gloves that the nurses had given her. She appeared pretty relaxed as if this was all something she had done before. My husband on the other hand questioned every click on the monitor, every rate being taken, and his patience was wearing thin. We both had a hard time waiting...
The hospital staff was amazing though and extremely accommodating. The anesthesiologist sat at her bedside asking her questions about home and showing her pictures on his iPhone from his recent medical trip to Peru. I think he was her favorite. It was not until 5:00 p.m. that she was taken into the OR. I was gowned up and rode along with her down her speedy race to her room. There they had set up an air pillow for her comfort. She never got nervous, or at least she never showed it. 
I believe that children have a greater sense at knowing people and she could tell by my watery eyes, and shaky voice that I was a little nervous. I held her a little tighter and a little longer...I think she knew how we were feeling and didn't let it show that  she was just as nervous as we were. I laid her on the table, sang her a lullaby...only a minute later was she fast asleep and ready for what was next. 

We were initially told that her surgery would last an hour without complications. The plan was to hopefully only remove a few layers of her cornea and do a partial transplant instead of a full transplant. Unfortunately we waited a little over two hours before she came out of surgery. Those were the longest two hours of our lives. The nauseous nagging feeling at your stomach was horrid. Nobody coming out to tell you whether everything was ok. We were the only ones left in the waiting room. 
The scarring had been so extensive that they had to remove the full cornea. Raeya was still fast asleep on the stretcher as we followed her down the hallway to the recovery room. The IV was still in place in her left hand with normal saline running to keep her little being hydrated. She had a patch placed over her right eye with gauze wrapped carefully around her head. Her surgery had been complete. We would find out within days how well it would work. 
We were just excited to see her face, to see the rise and fall of her chest. 
An hour later in the recovery room, she finally started to wake up. The first thing she wanted was some popcorn. Kids will be kids, and she was hungry! It was now 8:15 p.m. She drank a small juice from the kitchen and practically inhaled a lemon Italian ice; she probably didn't even know what flavor it was. 
After getting her cleaned up and into her pajamas, we carried her out to the vehicle to head back to the hotel room. She was exhausted but extremely hungry. We gave her some snacks, but within a half hour of being back in our room and in bed she was fast asleep. 

 Early the next morning was her first of many follow-up appointments. She never once pulled at her bandages or asked to take them off.   She waited patiently between the two of us in her seat taking pictures of herself with my phone so she could see what she looked like.  A little unsure...a little goofy...her normal inquisitive self. We were asked to take the bandages off before she went into the back private room. A couple pulls of some tape and there she was with her husky eyes...one that deep dark mysterious brown and the other a hazy ashy blue from the fresh new cornea. Not a word was said. She just glanced...everywhere...
We knew that results would not be immediate but her speechless reaction was just enough. The visit with the doctor told us that everything went well, her cornea looked perfect, and that her vision was already improved from 20/800 to 20/600.  It was a small step, but a step never the less in the right direction. 

 It has been three months since Raeya's surgery. her vision has improved from 20/800 to 20/80. We could not be happier with her results and with the surgeon, Dr. Zaidman. He is an amazing doctor, who has given our little girl another chance to see the world again. It is the first of two surgeries that will completely change her life. We are not aware of who the donor was or will be but we are extremely grateful for the gift of sight that was given to Raeya.

As a parent it is amazing to see the slow transformation that has occurred for our daughter. During Pre-K if we had asked her to color a picture, it would have been scribbles and all over the page. Her name would have been large enough to cover a majority of the paper...and now...
She can color in the lines and write her name at a mostly average size. I know this seems like something small, but to someone who has watched her suffer in pain, hating to color or write and wanting to wear her sunglasses indoors as well as out this is a tremendous achievement. 
As the end of September comes close, Raeya will go under general anesthesia again to get her stitches out of her right eye. We will follow up appointments, more medications, and another eyeglass prescription. But all this work, all this tiring traveling and fast food eating will all be worth it in the end!! She has come so far, and her journey is not quite over. 
Much love to all who support us and encourage us in our journey for our little Raeya "Sunshine".