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My son, Dane:Heart Hero!

Posted on February 14 2012

On January 1st, 2009, my husband and I found out we were going to have a second child. We were very excited about it because we knew this baby was going to make our little family complete! Our first son, Aubrey, was born a month pre-mature and spent two long weeks in the NICU due to un-developed lungs. This was the hardest thing we had dealt with yet and we were looking forward to a “normal” baby having experience. Four months later, our hopes were shattered when we were told on a routine ultrasound (to find out if baby was a boy or girl), that our baby boy was going to be born with a very serious congenital heart defect. He would need at LEAST one open-heart surgery to survive his first days. After the shock wore off, we still kept our hopes high and thought that the doctor could have been wrong and there was really nothing wrong with his little heart. The endless process of going to multiple doctors at least once a month began then. One doctor, was a specialist for high-risk pregnancies and he would conduct high-resolution ultrasounds every visit and even did an amniocentesis to make sure there were no other genetic defects, like down syndrome. I also had to go to the pediatric cardiologist office where they did echo-cardiograms on our little baby’s heart while he was still in my tummy. This is where they confirmed what the doctor thought was true all along. Dane was going to be born into this world with some truly grim odds against him. He had Transposition of the Great Arteries, or TGA. This is a defect that is very rare and happens when the main arteries in your heart are switched around. I remember (and probably will never forget) that moment when she said “yes it is Transposition”. In that moment, it became REAL. Unable to control my emotions, I broke down and sobbed. The doctor had to stop the echo, because she was unable to get a clear picture of the tiny, broken heart inside with my tummy shaking so much with every sob.
At the end of April (the same month we found everything out about Dane’s heart) we also learned that I would need to have my Gall-Bladder removed immediately, because of gall stones. Being pregnant and having this surgery would be scary enough, but knowing what Dane already had stacked against him, made this ordeal, TERRIFYING for me, my husband and our entire family. Not too long after that was over, I was put on bed rest, due to pre-term labor contractions. My doctors all agreed that they wanted our little man to grow as big and strong as he could while he was safely inside mama, so he would have the best chance he could for survival after his surgery.
Emotions were crazy (to say the least) during this whirlwind of a pregnancy. Guilt was a MAJOR one that I fought. Though, I knew deep down that it was nothing anyone could have done or prevented, I still had those motherly instincts telling me that I failed to protect him in some way. I knew the longer that I kept him inside my tummy, the more control I had over his well-being. And with this situation, we had NO control whatsoever, so we clung to any bit of it we could find! A part of me secretly dreaded his birth, because I knew I couldn’t keep him safe anymore. It would be out of my hands and into God’s and the doctors’ hands. I kept praying that God would work through the doctors and nurses and use their hands as His own. I prayed he would hold and protect my baby the way I would and mend his little broken heart.
This emotional rollercoaster wasn’t just mine either. My husband, Jason, is normally my rock, the man who brings me back to earth when I stray into dark places, but during this time, he was as lost and scared as I was. Not knowing what to expect was the scariest thing either one of us had been through. While everyone else planned nursery themes and water birth versus, epidurals and mid-wives, we were dealing with trying to prepare ourselves for the loss of a child. As much as you try to “prepare” yourself, you CANT prepare for that.
A scheduled C-section, with teams of NICU doctors, nurses, cardiologists and other specialists was preformed on August 20, 2009. Our BIG baby boy, Dane had arrived safely into the world, but that was the EASY part. He was IMMEDIATELY rushed to Driscoll Children’s Hospital, where MORE teams of doctors and nurses stood waiting for his arrival. Dane was born with TGA, as we had all expected. The only way to fix this and keep our little angel alive, was to open his tiny chest and switch his arteries around. The first day of his life, he had a Cath procedure where they went up through an artery in his leg and into his heart to put a balloon into a hole between his heart chambers and keep it open until surgery would be done. This gave Dane more time to grow and become stronger to fight and survive the days and weeks to come.
He grew bigger and stronger until he was 10 days old. On his 10th day of life, our baby had his open-heart surgery. He did great and was placed in PICU. This is when they told us, he would have his chest left open for 3 days in order for the swelling to go down and they could close his chest without it putting too much pressure on his tiny heart. We knew it would be hard to see him after the surgery, but seeing your baby with his chest open, is NOT what ANY parent wants to see. But seeing his little heart beating under the thin, transparent sticker they had over his chest, was a reminder that he had survived and this was nothing less than a miracle from God. After they closed his chest, we ran into a few things that held-up his recovery. First, he popped open his chest wires and had to then be re-opened and wired shut. Then, after that, he had gotten an infection in his chest from being open for that period of 3 days. This required them to put chest tubes in for irrigation. Dane then decided that he had had enough of those and started pulling them out with his toes. This did not help at all! But just goes to show you what a tough little man he truly is!
During the time Dane was in the hospital, Jason and I were living in a room downstairs, to be closer to him and help him feel our love while he recovered. Because they don’t allow children into the PICU, our oldest son Aubrey was staying with my parents and we didn’t get to spend that much time with him. He was 2 years old at the time and didn’t really understand what was going on. Normally its hard for the oldest to deal with having to share their parent’s attention with a new baby, but with Aubrey, he had to deal with a whole other set of issues. He was a little ray of sunshine and a real trooper for his Mommy and Daddy! He came to visit with my parents every day and this allowed Jason and I to step away from all the chaos and play with our first baby for awhile. He will probably never know or understand what a big help he was to us.
Our entire family was going through this right along side of us. They were there to support us and helped in any way they could. I know they were as scared and worried as we were but they tried to keep strong for us and kept the prayers flowing constantly! I wish I knew how many prayer chains we were on and where they were all located, but Ill just tell you that there were people praying for us that we had never met, who lived in other cities, states and countries and apparently God was listening to His people!
Finally our Dane was growing and healing great and our 34days of living at Driscoll were over! Dane William Celaya, our HEART HERO, got to come HOME where he belongs!
After his homecoming Dane had many doctor appointments to check to make sure everything was healing right and nothing else was wrong. He had cardiology appointments where he would get echoes done of his heart once a month for a while, then as he grew and got approval, we moved to every 3 months, every 6 months and NOW ONCE A YEAR!
Now that I have become involved with the American Heart Association, I see all the behind the scenes work that goes on to help more babies and people with broken hearts. I now know that if it wasn’t for people in the past, like YOU taking the time out of their lives to raise money for research, Dane would not be here today! This money we are raising goes to save lives! Whether it’s funding research, raising awareness, teaching people to live healthier or teaching doctors about newer, better procedures that can be performed, EVERY dollar counts! We thank everyone at the American Heart Association and anyone involved in the fight for better hearts around the country! Thanks to you, we have our Dane!
He will be 2 years old this August 20th and is the sweetest and toughest boy I know! He’s tougher than most adults I know, to be honest! He is our HEART HERO and I am proud to call myself a heart Mommy. He is truly a miracle and our little gift from God!

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