What's in a name?

Tim and I wanted to have a unique name for our special guy. "Blaze" caught our attention initially because the "z" went well with "Gilzow". Tim especially wanted our son to have a name that would stand out, he wanted it to be unique. It was important to Tim that doctors and other medical professionals would remember his name. Tim didn't want him to be just another patient, he wanted our son to be remembered.
Last week I sent a private FB message to the surgeon that performed all three of Blaze's surgeries. I wanted to thank him for his dedication and to let him know Blaze is doing well now. The surgeon messaged back that out of all his patients, Blaze's name was one of his favorites. What an incredible compliment. Tim was right, he needed a name that stood out and it did!
I'm constantly amazed at names we call each other, or even worse, the names that we call ourselves! I got to hear a message from Joel Osteen this past week and he emphasized that as individuals we are in battle all the time. The world is ready to tear you down, you at least should be on your side! You need to think positively and trust in the One who formed you. He loves you and you are in His image. In his new book, I Declare, Osteen has daily phrases to say over your life for blessings. He encourages every person to start the day saying positive affirmations about themselves, and claiming God's promises.
Dr. Alan Zimmerman talks about the negative effects of negative thoughts on other people! Just by thinking it, you can physically drain others. Incredible stuff!
So if negative words and thoughts are so painful to us, let's stop saying them. Let's build each other up. Be on each other's support team in this journey. While you're at it, be on your own support team! Think positively about yourself and look for positive things in the situation you're in.
It's hard! Some days wouldn't it be nice to be able just to sit down and talk to a friend about what we're going through?
Did you know that in Exodus 33, it says that God and Moses are friends. What an amazing thought! How incredible, that the God, the Creator of the Universe loves me and calls me "friend." What better name could there be?

"The News"

Everyone remembers the moment they were given information about a medical diagnosis. Each of us handles the news differently. For us, it was a day we had planned very differently. It was the 20 week ultrasound we had anticipated for months! This was the day, March 6, 2008, we'd find out if our beloved child would be a son or a daughter. I (Joy) had been considered high risk because of a rare blood disorder and because of another common medical condition. I had been referred to a specialist for an earlier ultrasound. The doctor at the time had assured me that he felt I wouldn't have issues in my pregnancy and would I prefer to come back to his clinic (about a 45 minute drive away) or did I want to go to my local hospital. I'll be honest, the appeal of staying close to home was alluring, but his office had some amazing equipment. The ultrasound tech had given me a 3D pic of my baby on the first visit, it left me wanting more. I had chosen to make the longer journey, and now here we were. With my husband, Tim, and my mom, Cathy, we were joyfully anticipating this visit.

The ultrasound tech could feel our enthusiasm. We were, well, happy, ready to hear our good news. Almost immediately we learned we were having a boy. Excitement hummed in the air. We were thrilled. Then something happened. It was subtle at first. The woman doing the ultrasound stood up and said, "I forgot, I was supposed to record this," then she stood up and put in a tape. A small thought, almost like a gnat buzzing around, popped up "she does this all the time, it's weird she forgot" but it was immediately waved away. Then a long time was spent taking images of his heart. We even started questioning her about it, and joking a bit. She was serious, then moved to other areas, including his brain and facial features, spending a lot of time. We were still bubbling with excitement and didn't think too much about it. She left to let the doctor know we were ready for him.

The doctor finally came in and started to take some ultrasound pictures himself, which seemed unusual, but we were still floating on our happy news and dreaming up names. Hope Leia was an entirely inappropriate name for a son! Then we were given some news that seemed to make the world shift a bit. It went something like this...

I'm sorry I have some news to share with you, that isn't what you anticipated today. Your son has a signficant heart condition. He will not be born in Branson or here in Springfield, he will need specialized care in St. Louis. The left chambers of his heart aren't developing. He's not going to have a full heart. I'm sorry I don't know your convictions well enough, I need to ask this, would you consider an abortion? The answer was a solid "no". I'm not sure I could even voice it at the time, I know I shook my head. There's also compassionate care, which means, if we determine that he's not going to make it, we let you carry out your pregnancy to full term, but we will not take extreme measures to save him. You would be the one we're concerned for, instead of the baby. No c-section. Now, there is a series of surgeries, it comes in stages. As a newborn he would have surgery, around 8 months old, then another surgery around 2 1/2. Of course, a heart transplant could be an option, but it's hard to find a donor heart. I'm sorrry, this is a lot of information for you to take in.

Something happened during "the news". At that point I looked at my mom who was silently crying, I looked at my husband, who had the appearance of someone who had been hit in the gut with a hammer. I felt protective and defiant, we now call it "Mama Bear" mode. I wanted to know everything. I wanted every detail and what we could do for our son. I soaked in all the details and information I could.

While we were leaving I looked at my crying mom and said, "Shame on this kid. He's not even born yet and he made his grandma cry." On the ride home was my turn to cry. I had to call people at my work and let them know he was a boy, but also the other news we had learned. I cried the whole trip home. I debated during that time if we should even plan a nursery. Yes we needed to get ready for him, but how awful to have a nursery set up and ready to go if there would be no baby to put in the crib. When we got home I threw myself on my bed and sobbed. Then I was kicked...and kicked...and kicked some more. It was almost as if I could hear him say, "I'm here! Don't count me out."

The next day I went to work for part of the day and I sent an email out to almost everyone we email addresses for, asking for prayer. I left work early that day, and we shopped. We shopped for clothes for our baby boy. He was coming, and we needed to get ready!

Our God is greater than any medical diagnosis. We weren't sure what was in the future for us, but we were confident in the One who did know. If we had known how things would have turned out, I wondered if we would have enjoyed the journey a bit more. So thankful for our blessings!

Welcome!

"Two and a Half Hearts" has been a dream of our family's for some time now. How did we come up with such a name? It really represents our fam fairly well. Tim and Joy have a son named Blaze and Blaze has 1/2 a heart. We've longed to have a ministry where we can reach out as a family to others whose children have gone through a devastating diagnosis. Our attention on the FB page might lean more towards Congenital Heart Defects (CHD) because that's what we've been through, that's what we can talk about, but everyone is welcome to join in. On this page we just want to share what's on our hearts, what we've gone through, and how we're currently doing. This blog is going to jump back and forth a bit from previous experiences to where we're at now. Blaze is 4 years old, he's had 3 open heart surgeries and the last one of those was a year ago. We've had some down time from that last surgery and now we want to help others who are in a medical journey, too. Our faith is a major part of our journey. God has blessed us beyond measure. Blaze is thriving! We've had quite a journey...it hasn't been easy, it hasn't been all bad, but it has been something we've been blessed through. We are so thankful for the prayers, and praise the God who answered those prayers.

Thanks for coming on this journey with us!
The Gilzows