This is probably going to be a little tough for me to write - and I thought about NOT acknowledging this day, but something is making me want to do this. To put it on "paper." To remember and be thankful. So, here goes nothing...
Two years ago today - February 20, 2007 - Lee and I were on our way to see Dr. Edwards in Savannah for my 20-week ultrasound. We had so much going on - Lee was actually planning to leave straight from the appointment to go to
Tifton...he had interviewed, gotten and accepted a job (the job he has now), and was starting that very day. He was going to be staying with my parents in
Tifton until we sold our house in Savannah and we were able to buy something there...which I found kind of hilarious. I mean, who wants to live with their in-laws?? But he was totally fine with it, and (this really is true) my parents are the coolest...so I was happy about the arrangement.
Anyway, our appointment was at 8:50 that Tuesday morning - it was cold, foggy, and just kind of miserable outside. We took separate cars so that Lee could get on the road after the appointment and I could drive on to work. I was nervous, but that was to be expected. I was mostly just excited - and I was POSITIVE that we were going to find out that we were having a little boy. I just knew it. And Lee was just as positive that we were having a little girl... so we had a little friendly competition going on.
We made our way into the ultrasound room with our tech, Angie. She asked us if we wanted to know the sex of the baby - a resounding "YES!" to that question. Then she got me all settled,
gell'd me up and got to work. We found out within seconds that we were having a little girl (Lee won), and she was showing us the head, arms, feet, toes, etc. etc. Then, Angie got really quiet. Too quiet. I immediately panicked and asked what was going on. That was the moment that changed our lives forever.
"Guys, I hate to tell you this...but
something's not right with her heart."
To be honest, I don't remember too much after that. It's extremely blurry and comes in bits and pieces. I completely lost it - I do remember that - and Angie mentioned some things to Lee (I did catch something about "left side not developing" - that piece of information stuck), and then she shuffled us out the building and into the back door of my
ob's office. This, I figured out later, was to keep us from upsetting the other patients. I get that - I do -
no one who is pregnant wants to see another pregnant woman bawling about something she just saw on an ultrasound. You're talking contagious panic - coupled with hormones; that can't happen at an ob/
gyn's office.
So, there we were, in tears, sitting in one of Dr. Edwards' patient rooms listening to him tell us that he "...wishes he could tell us it would be
ok. blah blah blah blah..." It was excruciating. And I wanted to know what to do next. He called over to the Savannah
Perinatologists' office to try to get us an appointment. No dice. He told us it might be a few days before they could see us. A few days?! How are you supposed to deal with that kind of information - which basically is NO information - for a few days? But, we had no choice.
Lee called his new boss and briefly explained the situation. I got into my car - called my mother first. One of the hardest phrases I've ever uttered was, "Mama, there's something wrong with her heart..." Then I fell apart. I was just so helpless. I called my best friend, Beth, next - said the same thing to her...fell apart again.
Lee and I both drove to our house in Savannah - we were panicked. I have never truly understood the meaning of having someone pull the rug out from under you until that moment. I was a wreck. I didn't have the strength to call work, so I sent an email. I just couldn't bear talking to them, even though many of them were close friends. Lee and I talked - trying to piece together what we could remember from the nightmare at Dr. Edwards' office...I thought I remembered the word "syndrome" - Lee was devastated at that because it meant the problem was probably not isolated. His devastation threw me into a deeper panic...it was a truly terrible few hours.
We called Dr. Edwards again - trying to clarify if we indeed heard "syndrome," trying to get more information, trying - in vain - to get some peace of mind. All we got was more confusion - and Dr. Edwards told me that whatever I did, do NOT get on the
Internet and start searching for things. He said I would only make myself crazy. Yeah, right. Like I didn't jump right into that
brier patch.
Our appointment with the
perinatologist was not until about 3 days later - we could not just sit there. It was truly torture. So I decided that we should both go to
Tifton - Lee could go ahead and start work the next day, and we could still be together, and I could get a little added support from my parents. It was a wonderful decision. I have never needed family so much in my life.
The next few days were pure, unadulterated Hell. The "why us" - the "what did I do wrong?" - the "what could I have done differently?"...the questions you ask yourself over and over and over that can never truly be answered.
Heading back to Savannah was tough. It was like going back to the belly of the beast and asking for more. My mom came back with us so that she could stay with me in Savannah when Lee had to go back to
Tifton. The doctor's appointment was more stressful than anything I could have ever imagined - so many people told us (before that appointment and afterward) about similar experiences that just "fixed themselves" - it was so tempting to hope for an outcome like that...but so dangerous to lull yourself into that false place.
Anyway, the fetal
echo cardiogram did show underdevelopment on the left side of the heart. When we went in to talk to the doctor about the "diagnosis," he brought up
Hypoplastic Left Heart Syndrome. I already knew. I had been on the computer constantly -
unbeknownst to Lee - digging into every heart defect website I could find. That was the "syndrome" that I found that dealt with the left side of the heart...and it was, apparently, the most serious heart defect that an infant can have. It requires 3 surgeries - all open heart and all extremely complicated and dangerous. I even knew the year of the first successful three surgeries (1978)...I knew more than I should have known. And more than I wanted to know.
I spent a lot of time by myself those first few months - Lee was in
Tifton working, and even though my parents tried to share time with me in Savannah, that was not an easy arrangement. I am not sure how I got through...I found strength I didn't know I had. I found something called "Heart Mommies" online, and I read voraciously about their plights and their ups and downs. I educated myself - prepared myself for the worst - prayed, cried, watched American Idol, went to work, ate, cried some more...it was a painful and frightening time.
We officially moved to
Tifton on April 2
nd, 2007. I had somewhat come to peace with our situation at that point...not totally, but I was trying. We moved into our new house, we ordered our crib and baby furniture; we did things that were very, very hard to do without knowing what lay ahead. But we did it - and that point in time made us a stronger couple (and family). On April 25, 2007, Lee, myself and my parents headed up to Atlanta for our first appointment with the doctors at Sibley Heart Center with the Children's
Healthcare of Atlanta.
That was a very long day - we had several appointments. Met with the pediatric cardiologist, Dr. Nanci
Stauffer, met with our
perinatologist at
Northside Hospital (where I gave birth), and my brand new OB, Dr. Richard Robbins.
To bring this chapter of our very long story to an end, we found out that day that our diagnosis was no longer
HLHS...it had been officially changed to
Coarctation of the Aorta. You would have thought someone gave us a winning Lotto ticket. By this point, I had read about every
CHD there was, and I knew the significant difference between
HLHS and
CoA - and it was huge. There would still be surgery - that was almost guaranteed - but our little one was probably going to be
ok.
Man, I could go on forever - and this is the first time I've actually written about all of this...wasn't sure how it would go or how much I had forgotten. Not much, apparently. How could I, really? Anyway, we are a very, very lucky family - with an amazing, beautiful, smart, healthy little girl. I will follow this entry up with her birth and surgery when the spirit moves me, but for now I will look back on this day - exactly two years ago - and be thankful for what I have and what we have been through.
Wow.
