Wednesday, September 29, 2010

& the storm begins..

In April of 2010, my fiance, Scott, and I found out we were expecting our first child together. I have a four year old daughter from a previous marriage as well. We were definitely not trying to conceive, and it was very hard to cope with for me. Scott was of course ecstatic. It was a rough pregnancy from the very beginning; morning sickness and severe headaches until the 18 week mark. When I first felt the baby move, I was instantly in love. I no longer resented the pregnancy and instead began to embrace it. We went for our 20 week ultrasound and found out our baby was a little boy! I had really wanted a girl, but as long as he was healthy I didn't care. The ultrasound tech spent a long time looking at the baby's heart and finally said she "wasn't able to see something she needed to see" and was going to recommend another ultrasound, but it would have to be approved by the DR first. We didn't think anything about it at the time and never received a phone call from the DR to review the ultrasound or schedule another one. We assumed everything was fine. Scott & I decided to name our little man Evan Scott. He has been extremely active since the first day I felt him move. About a week or so ago, we decided we wanted to have a 4D ultrasound done so we could have a DVD of Evan kicking and squirming around. Our appointment was scheduled for 9/27. Monday came and we went into the OB office for our u/s appt and were overjoyed with the video of Evan moving and kicking. He wasn't cooperating and wouldn't let us see his whole face at one time, but from what we did see he was adorable! Immediately I felt closer to my little man.. We left the OB office with our DVDs and headed out to do some shopping. About 30 minutes after we had left, we got a phone call asking for us to call back the OB nurse immediately. I thought it was about the GD test. The nurse tells me she made an appointment for us at FSU Health in Tampa for the next morning at 9AM. I ask why and she just says there might be something wrong with the heart. Immediately my mind is running wild and I am terrified there is something wrong. Scott and I try to stay calm and prepare for what's going to happen at the next appointment. We arrived at FSU Health at 830 am and once we are back in a room with a nurse, I ask her if she can tell us why we are there. She says my paperwork says there's a possible heart defect. We are taken back to do an ultrasound and the tech takes a lot of time getting images for the DR. We are then called back into the DR's office and he starts off telling us Evan is basically perfect; he's developing great and everything is where it should be. Then we get to the heart. He tells us Evan does indeed have a very serious heart defect, and I immediately burst into tears. The rest of the conversation went in one ear and out the other. This DR tells us the baby has Hypoplastic Left Heart Syndrome and will require 3 open heart surgeries to survive. How are you suppose to handle that kind of news? One day your out buying the last little things you need for the nursery, preparing to bring your little man home in 10 weeks, and the next day you're being told he may not even come home. We waited at the office while the nurses scheduled an amniocentesis and fetal echo at the hospital next door. The rest of the day was a complete blur. The amniocentesis was extremely painful, and I am still in fear of what the results will say. The fetal echo felt like it took forever. When the pediatric cardiologist, Dr. Nardell, arrived, we finally got some answers. She confirmed the diagnosis and let us know we would need to deliver the baby at All Children's hospital in St. Petersburg. She also gave us our first sign of hope; an 85% survival rate for the first of the three surgeries. We still have tons of questions to ask, and don't meet with her again until next Tuesday.

It's amazing how your life can turn upside down in a matter of minutes. I feel so lost, and I feel like I have no where to turn for help. There are so many things to figure out and I don't know where to begin. What will I do about my job? How will we still be able to support ourselves with a baby who's going to need 3 costly surgeries and an unknown amount of hospitalization? How will we care for our almost 5 year old? Who will watch the baby while we are at work? It's all so overwhelming and I can't stop feeling helpless. I believe in miracles and I know I will pray every second I can for a miracle for my Evan. I will not give up on him or his fight, we will make whatever sacrifices we can to save him. I just don't understand why he won't be okay, I FEEL him move, I can HEAR his heart beating. I am so in love with him already and I dread having to see him go through any pain and suffering. How is this fair?! He's only a baby. I don't want to question God, but I just don't understand why any baby has to go through all of this. Why us? All I want now is to carry to term, deliver my little man, and hold him. I just want to feel his warm skin in my arms, cuddle him, give him kisses, and let him know mommy and daddy are going to be by his side through everything he will have to go through. I fear we won't be able to bond with him. I feel guilty for taking so many things for granted in my life. Every time I hug my sweet girl Elli, my eyes water up. I have never appreciated the fact that she is so healthy, and wakes up every single morning. She can run and play and go to school like all normal kids her age. I will NEVER take that for granted again.

So our little man is going to be born with half a heart. That's so hard to write. Half a heart. Here's a cute story I found today that I found very comforting..

It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that he is just going for a visit. He is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared. He asks, "Will I be okay with only half of my heart?" Jesus replies, "Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart." "Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."

Evan Scott Sawyer,

In a few weeks you will make your entrance into this world. It's going to be a long, rocky road for the first year, but I promise you mommy and daddy will be there for you every step of the way. I love you already and it brings me so much joy to feel you squirming around in my tummy, even though you sometimes keep me up at night. :) I can't wait to give your sweet little face some kisses! You're going to be a miracle Evan, I can feel it in my heart. SO many people are praying for you already, and will continue to pray for you until you are completely healed. God is in control here, my sweet baby boy. He creates miracles and I believe he can perform a miracle for you. It's so comforting to know you are PERFECT as long as you are inside of me. I wish I could keep you there forever. I still feel lost, not knowing what to expect is hard for me. But I know you are strong! I can't wait to see you grow up.. If you are anything like your father, you will be an AMAZING man. So just a few more weeks baby Evan. Hang in there for us baby, we can't wait to bring you home.. <3