This is a blog for my daughter Scarlett. She was born with a complex congenital heart defect known as Tetralogy of Fallot with Pulmonary Atresia. She is my little hero.

Thursday, November 18, 2010

2 Years Ago Today

I was sitting at my desk at work this morning, when I glanced over at the calendar and saw the date. November 18. It doesn't matter that it is November 18, 2010, because November 18th is all that matters.  November 18th. A day that will live in infamy. A date forever scarred in my heart, mind, memory and the day that changed my life forever. November 18, I get a lump in my throat and tears in my eyes just thinking about that horrible awful day.

What happened on November 18th?

It was a chilly autumn morning in Phoenix Arizona. Those days are usually hard to come by even by November 18th. I woke up, got dressed and headed for a fetal echocardiogram appointment that unfortunately for me, did not end how I thought it would.   I was so unsuspecting. I was so oblivious. I was so vulnerable. and I was so confident that nothing was going to go wrong. So sure of myself, that I went to the appointment all alone.

I thought to myself, everything is gonna be fine, they're finally gonna tell me once and for all that I'm just a worry-wart and my baby is fine. They're gonna tell me to stop worrying and stressing that something's wrong with my baby. They're gonna put all my suspicions to rest and everything is gonna be fine.

Boy was I wrong.

I arrived at the Scott and Laura Eller Congenital Heart Center in Phoenix Arizona at about 8:00 in the morning. First appointment of the day. I was bright eyes and busy tailed not knowing what the future held. I was 6 months pregnant and I had been diagnosed with a single umbilical artery. I had been told for approximately 2 months that everything looked fine. I was having the fetal echocardiogram done just so they could "shut me up". They were willing to do the echo based solely on the Single Umbilical Artery.

I should have known something was wrong when 4 differnt techs/docs/students came to assess the monitor on the ultrasound machine. Yet, I was still convinced that everything was okay with my baby. That I just needed to get this over with.  I was told the ultrasound would take an hour and a half. So I wasn't the least bit concerned when they popped in the DVD "Pirate's of the Carribbean". I watched 3/4ths of the movie before Dr. Alboliras walked in to complete the ultrasound.

I thought it was all routine. I thought nothing of the doctor being in the room. He asked me if anyone had told me that there was something wrong with my baby, and I answered him...no. He said "then why are you here today?", and I answered, "because I want to make doubly, triply sure that my baby's heart is okay because I have a single unbilical artery". He than asked "Are you alone today?", and I thought ~why the heck is he asking that question?~... and I answered "yes". I even breifly thought "WHY?... DO YOU HAVE BAD NEWS TO GIVE ME?", but I didn't voice that concern. I just said "Yeah", when he said "so there's no one  waiting for you in the lobby?"...so knowing I was all by myself, he just said "okay, we're done here, let's go into another room to go over the results"

I wiped the ultrasound goo off my pregnant belly. I grabbed my purse and coat, and walked into a consultation room around the corner. Then began the absolute worst experience ever. and I tear up just thinking about it and reliving it in my memory.

I took a seat. Dr. Alboliras told me "It's a good thing you came in today... because your baby has a complex congenital heart defect and will probably be born blue and will require surgery to allow blood to flow from her heart to her lungs".  I just sat there dumbfounded. Complete disbelief.  Huh? What did you just say?

Then he says how far along are you? and I say 26 weeks, and he says "yes, that's a little bit to far long to consider terminating the pregnancy"... and I'm a complete trainwreck. I was bawling my eyes out. Then I asked him to explain again what was wrong. I heard "big hole in her heart"... (in between Pulmonary Atresia, Tetralogy of Fallot, unoxygenated blood, blah, blah, blah...)... and I just fixated on "hole in the heart"... so between my tears, I said "This is common, right? This happens all the time?". and that's when my world came crashing down around me.  He says "No"...  

"This is extremely rare..."


and the rest is a black cloud blur of heartache, headache, and uncontrollable sobbing. All. Day. Long.

I couldn't even talk on the phone to tell Todd that something was wrong. I couldn't even get the words out I was crying so hard. I was absolutely devastated. I didn't even know that my nightmare was just beginning, and that it actually gets worse from here. I was just absolutely blown away by the news.... and I was all alone. No husband, no sister, no mother there to hug or console me. I was crazed with greif. I was hyperventilating. I was just so taken off guard. I never expected this to happen. I was unprepared.


Yes, November 18 is not a good day for me. It is a day that I look back on with sorrow. It was the day that mourned the loss of a healthy child. It was the day that I fantasized about a little baby, a little toddler, a little girl, a little teenager lying helpless in a hospital bed connected to tubes and wires fighting for her life. Alone and scared. Without her mommy. In pain. Suffering. Praying for survival. Praying for her heart.

I don't even know how I drove home that day. I cried for hours and hours. I don't think I ever stopped crying that day. It was just a complete blubber-fest.  I remember my best friend Kristy came over that night and hugged me and tried to make me feel better. I remember showing her the pictures that Dr. Alboliras drew for me. The picture of a normal heart, then the picture of Scarlett's heart.  I still have those pictures.

November 18. The day I guess I un-officially became a heartmom. A label I never thought I would embrace 2 years later. Yes, this is a day I will never forget as long as I live. I can't even go into that echocardiogram room without getting teary eyed. That's where my world came apart at the seams. That's where a team of 4 cardiologists diagnosed my baby in utero with a severe CHD. The sickest of the sick. The "high risk" CHDs.

 I can't belive how fast the time has flown. It's been two years already. But the pain associated with THAT DAY are still fresh in my mind as if it happened last week. I'm sure all heartmoms have similar stories and they may they also know the exact day that they found out about their child's heart defect. and the feeling of complete helplessness and hopelessness they felt at that precise moment. It is awful. You never forget.  Never.

So today I'm remembering 2 years ago. and I am thankful and grateful that I found out that day. I'm glad I knew what to expect. I'm glad I knew what I was in for. I'm glad that there was a team of doctors ready to care for Scarlett the moment she was born. I am humbled that modern medicine has allowed me to have that knowledge on November 18, 2008. Even tho I still consider it the worst day of my life. I am still grateful that I knew before she was born.