Friday, March 20, 2009

The Heartbreaking News

The day after Emily was born started off just as I expected, routine post-natal care and an early morning visit with my new baby to feed her and bond with her. As the day progressed nurses, doctors and visitors came and went. But that day was far from routine. No one could have prepared us for what we were about to experience.

Dr. Chiang is a Pediatric Ophthalmologist from Columbia University in NYC who was asked to come and examine Emily. We were waiting all day for him to arrive and finally around 5:00 or so he arrived. The nurses wheeled her out of the room in her cute little bassinet so that he could examine her. When he was done, he came and talked to us. Our families were there, so they heard the news first hand.

He was very matter of fact about it, he showed no emotion and didn't sugar coat it. Which kind of didn't settle well with me. There was something about him that I just didn't like and it had nothing to do with what he said. But none the less it was the words he did say that still ring so clearly in my mind. Emily's corneas' were cloudy, but she had responded to light during the exam, which meant she had at least some vision. But the extent to which she would be able to see well or see at all could not be determined. He could not tell us exactly what was wrong with her, but suspected it was something called Sclerocornea, which meant the white parts of her eyes have grown over the clear cornea. He could not see through her corneas to the inside of her eye to determine whether or not her retina's were formed properly, which meant she could probably not see out even if they were. She was blind.

I asked what treatment was available for her condition, what would enable her to see. The answer was not easy to hear...She would need a cornea transplant...and soon. The quicker the transplant is done, the better chance she will have at developing vision. He referred us to a cornea specialist that he works with at Columbia, Dr. Florakis, and said that we should meet with him as soon as possible. He even suggested that we be discharged from the hospital early so that we could take her right away. He gave us his card and Dr. Florakis' phone number and left.

I was frozen, paralyzed in every way possible. There were no words at that moment, only tears and heartbreaking thoughts of our brand new baby girl needing surgery and possibly being blind for her entire life. The only thing I could do was cling to Jason as hard as I could and cry. I cried harder than I have ever cried before. I remember shortly after Dr. Chiang left, Jason's brothers family came to visit. I couldn't even begin to tell them what we had just heard, so I asked someone to explain to them what was going on, they must have gone out in the hall to talk because I don't remember hearing what was said. The emotions that ran through me that day are indescribable. I would never wish for anyone to ever feel the pain that I felt that day. Suddenly the joy and excitement of our new little girl's arrival, turned to fear, anxiety and sadness. Our life was turned upside down in that moment, and it would never be the same again.

Our baby's life had just begun and was already filled with so much uncertainty.

We felt helpless and heartbroken.

Monday, March 16, 2009

October 25th, 2007

The morning started out with great excitement...we were going to have a baby today! I was scheduled for a c-section at 9:30 am. We arrived at the hospital and the nurses began their pre-op monitoring and procedures. I was actually having contractions, I could see them on the monitor, but they were small ones, not enough to be painful but just enough to be uncomfortable. The surgery started just about on time, which is ironic in hindsight. Everyone had bets on what time the baby would be born, but my heart was set on 10:13...after all there had to be a 13 in there somewhere right?

Just as Dr. Weidman came in a got started with the surgery, a nurse asked him if he wanted music on and he said yes. It was not a radio, it was a CD. I remember that because there were no commercials in between songs. I have no idea what the first song was, but when it ended and I heard the beginning notes of the next song I immediately looked at Jason and began to cry. When I was pregnant with Matthew, I made a mix of songs that I wanted to play while I was in labor. Ideally I wanted this one song to be played right after Matthew was born. It's called "I could not ask for more" by Sarah Evans. The words are just so powerful and emotional. Sadly, I ended up with a c-section and never got to play the song. But on that day, in that OR on that CD...I finally did get to hear it. I couldn't believe it, of all the songs in the world...that song just happens to be on the playlist that day? I cried through the entire was like we had come full circle...our last child enters our lives in a way we had hoped to welcome our first.

As Dr. Weidman prepared to pull the baby out, Jason was watching the 10:13 am...Emily Elizabeth was born! It's a GIRL! We were so surprised and couldn't believe it. Jason's first words to me were "We did it baby, we did it...It's a girl". We had a daughter and it felt amazing! I couldn't stop crying, we were both so happy. After she was cleaned off and wrapped up, they brought her over to us and handed her to Jason. He was so proud, he had a little girl now and it made us both feel so complete.

But I saw it right away. There was something not quite right about her eyes. I didn't question it at first because I figured it was because of the ointment that they put in a babys eyes right after birth. They looked foggy to me, but I was so completely in love with her that I dismissed it and was just enjoying the new thoughts of having some pink in the house!

After they wheeled me into my room, Jason eventually made his way to find me. He had been in the nursery with Emily watching her get a bath and having some routine tests done. He came and told me that he heard one of the nurses say to the others in the room, "come and look at how beautiful her eyes are". I remember saying that "she must have the most beautiful eyes they've ever seen". I guess I was right...they never had seen eyes quite like hers before...neither did we.

Later when they brought her to me, a nurse came in and said that they tested her eyes and she is responding to light which is good, but since her eyes look cloudy they called in a pediatric opthalmologist to come and examine her the following day. No-one really told us how serious this was. We were scared. The first thing that crossed my mind was that she was blind, but I couldn't bring myself to say it. I immediately went into new mommy mode and just started to take care of her and teach her to nurse and tried to put some of the scary thoughts in the back of my mind until we knew what was wrong with her. After all, today was her birthday and we were all just enjoying the fact that she was a girl!

It's been 507 days

It has taken me more than 16 months to sit down and write about Emily's condition. Up until now, I have only talked about my feelings with some close friends and my husband. I need to do this, I need to get these feelings out onto a screen and out of my head. I think the sooner I can do that, the sooner I can start to heal. I blogged throughout my entire pregnancy and my last post was the day before Emily was born, 507 days ago. I had planned on blogging about her birth, our new family and the new life that we were bringing into this world. But in the days, weeks and months following her birth...I couldn't. In fact for the first month of Emily's life I was in shock, in disbelief and overwhelmed with heartache for my little girl. I couldn't do much more than cry. I didn't want to talk to friends or family about it because I couldn't bring myself to actually say the words that needed to be said.

Emily was born blind.

But today I am stronger than I was then. I have come to terms with Emily's condition and accepted that it is now part of my life, our lives. It has been a long and hard 16 months, and the next few months don't look much brighter. But we will make it through, one day at a time. I want to go back to the beginning and write about how we got to where we are today. So that is where I will start...

Her Eyes...

Her eyes, that's where hope lies.
That's where blue skies
Meet the sunrise.
Her eyes, that's where I go
When I go home.

...She got the kinda strength that every man wishes he had.

...She doesn't know the word 'impossible'
Don't care where I've been and doesn't care where we're goin' to...

...She's beautiful. So beautiful.

(Words by Pat Monahan..."Her Eyes")