Faces of CHD: Xavier's Story

It is Congenital Heart Defect Awareness Week. Each day this week I am sharing a different story featuring an amazing heart warrior. Thank you to all of the families who have allowed me to share their stories with you. These are the faces of CHD.


Day4: The Story of Xavier Thomas Ross

My husband Nate and I were so excited to find out what we were having. We had been calling the baby "furda". As in this is "furda" baby. Silly I know. I was so ready to give my little peanut an identity. I thought for sure that I was having a girl. We started that appointment off with the ultrasound. She started pointing things out to us. The brain, lungs, legs, spine, arms, face. Xavier was face down, so she had to really work to get some pictures. All she said about his heart was that she was getting a good heart beat, but that she could not get a good picture. She said that it was most likely his position. She gave us the news that it was a boy. I was so excited. My heart was beating so fast. We left the room and she said to wait for the doctor. I can't explain it, but my heart never slowed down. I remember thinking as we were waiting, that I might pass out it was beating so fast. I just decided that it was because I finally knew that I was going to have a son and went on ahead sending out text messages with the good news.

Then we saw the doctor. She was very calm. She just said that she could not see all the chambers of the heart. She said it could be something. It could be nothing. Since he is in such a difficult position, she wanted us to go to a high risk doctor to get a 4D ultrasound done. Something inside me knew that something was wrong. I cried the whole way home. It would prove to be a very trying week in our lives. At that time I can honestly say that it was the worst week of my life.

So we all know how the story ends. High risk doctor informs us that our little baby boy will essentially be born with half a heart. Amnio is done...and the stages of morning begin. It was only about 3 hours between leaving the high risk doc and arriving at the pediatric cardiologist but if felt like a lifetime. My parents made the 4 hour trip from PA to be with me. It was such a blessing to have them there. We were not really presented with much hope from the high risk office. She really could not explain HLHS to us or give us any hope that anything could be done. She was grossly misinformed. I walked into the cardiologist office feeling like I was walking to the electric chair. He took us into his office and asked some general questions. Then with the warmest smile on his face he said..."If this is HLHS..I have places to send you where they can fix your son's heart. Its not going to be easy, but he can life a normal, healthy life". I am pretty sure that was the first time we took a breath since the week began. I knew at that moment I would go anywhere, pay anything, see anyone to give my baby boy a fighting chance!!

Xavier Thomas Ross was born on May 28th, 2011 at 8:04 pm. He was so pink and had big beautiful eyes and a wrinkly forehead. I loved him the minute I saw his little face. He did well and we were able to spend some time with him before he went to the CICU. He spent four days just chilling out and fliting with the nurses. On Wednesday, June 1st, 2011 he had his first open heart surgery called the Norwood. He did well and only had two set back during our first month in the hospital. He went home on June 22nd, 2011. He did great at home and had his feeding tube out by August. He had his second open heart surgery on Thursday, October 13th. It was hard to see him in so much pain, but he was such a tropper and went home in a week. It took about two months for him to really strat to act like himself again. Now he is thriving dispite HLHS...He is winning his fight. He still gets his Lovenox shots and still take medicine, but he is a normal, happy 8 month old!! And we are super proud of him.

To read more about Xavier check out his blog:
xaviersheartjourney.blogspot.com