Monday, February 13, 2012

Connected By Heart ~ Day 5 ~ In the Family

Connected By Heart

Sometimes Congenital Heart Defects effect more
than one person in a family...
That 1 in 100 happens more than once... without the 100.

Most CHDs have NO known cause...
AND MOST of the time they are NOT Genetic...
BUT once there is one CHDer in the family,
the chances of another CHDer is higher...
usually higher to have either sibling CHDers
or a CHD Adult having a CHD child.

Here are Litter Brother, Big Sister CHD stories...
2 amazing children... one now in heave, the
other on earth who have inspired and
forever impacted their family.

First, here is beautiful and emotional
song I dedicate to siblings... the ones who
have one in heaven...
This song is a sister, sharing her love
for her heavenly brothers, who when I earth
were her angels in waiting:

Austin's Story: (Little Brother)

With the birth of our son Austin came a world wind of emotions. We knew even though we were putting an end to the complicated pregnancy, that his birth would bring so many more challenges. At 22 wks. pregnant my husband and I went in for a routine ultrasound and came out not knowing the road ahead may bring. After two more ultrasounds our worst fears were confirmed… our precious unborn son’s heart did not develop right. We met with Dr. Kanakaria who bless his heart kept telling us that we did not do anything to cause this, he promised us that when Austin was born he would make sure he got the best of care. It did not keep us from wondering what we did, and making us feel like our world was being taken from us. In utero he was diagnosis with Common Atrium, Single Ventricle, Pulmonary Stenosis, and possible Heterotaxy Syndrome, and asplenia, and until he was born they would not be able to draw any further conclusions. On July 3, 2005 Austin Skylar Gregory was welcomed to this world. As soon as he was born I got to hold my precious son in my arms, and within a matter of seconds he was whisked away from my arms and taken down to NICU. I did not want to let him go, but made sure my husband followed him and watched him closely. Not long after his birth he was vented, but seemed to remain stable. As the days went on we thought he was progressing well and soon would be on his way home. Then we got the call…and when we thought the ride was coming to an end, we QUICKLY realized it was just getting started. One minute we were told that our son would be coming home in a few days, and the next Dr. K decided that Austin was going to need to get the BT Shunt placed in after all. Three days later he was in surgery. Dr. Bailey said the surgery worked great and said that he should be home by that weekend, but that night he had a few setbacks. My husband, Suzy, and I watched as the doctors calming starting bagging our son. In a matter of days he turned for the best…the ride was looking good. Once again we prepared to bring our precious angel home. The day we were getting ready to bring him home, he starting having complications with his breathing and heart. Dr. K and Dr. Bailey decided to do an catherization... We were told that the procedure should only take an hour, well an hour turned into a few hours. All of a sudden we got the call to meet the doctor on the heart floor. We were told that Austin would need emergency open-heart surgery. The BT Shunt was clotted. The doctors gave him little chance for survival. They did not foresee him making it out alive. All we could do was cry and hold each other hoping for the best. My husband and I got to spend about an hour with our son before going into surgery. He lay there hooked up to machines, he looked so peaceful, but yet his heart was still broken. Would he ever be whole again?? Me and Mitch got to go down with him to the OR, when the time came to leave him there not only were we but the nurses eyes were filled with tears, we all feared the worst. The Surgery was a SUCCESS; it did not take long at all. Dr. Bailey and his team did a great job. Austin once again proved just how strong he was. He was a fighter And like papa called him he was a TIGER.

They had to leave his chest open, because of the swelling. They decided not to put any more pressure on his chest. He was in critical condition but he was doing well. We had spent the next day by bedside watching our angel, and within ten minutes of leaving his side he started to have a heart attack. Luckily Dr. Bailey was at his bedside and literally used his fingers to pump Austin’s heart. Austin’s body functions started to fail at time but the doctors always seemed to make everything work again. He then got NEC and his abdomen soon became swollen, after about a week he fought it off with the help of strong medication. He was looking good again. I finally got to hold him, but it was not for long he seemed to not be doing well off the ventilator, so they had to re-intubate him. Then his central line got infected and when they pulled it our blood clots released into his body. Austin did not let them get him down; he fought and kept fighting harder than ever. It was so hard to just sit there and watch our son go through all of this knowing there was nothing we could do to make things better for him. Why couldn’t it have been us? We would have done anything to take his place. A week later, Austin suffered from a neurological stroke. He was down for some time. Dr.’s feared the worst. What kind of damage happed to him during that down time?? They thought he may have lost his vision. After that he just laid there helpless. They were no longer able to take blood from the line, and he was getting bedsores. The NEC came back. Things were not looking good. We had to start deciding how far we were going to push our son. The doctors wanted to place a broviac in but the day they planned to do it, they soon realized his veins and arteries in his upper body were no longer any good. They were thinking about placing it in his upper thigh. They sent in someone to let us know what the changes would be. My husband asked her what the chances that this will work are and what are his chances of survival. She looked at us with tears in her eyes and said it would only give him a few more days of life, that they knew he would not live to see his first birthday. We were so overcome with emotions; all we could do was lay our heads by our sons and cry. After some more tests were taking they realized that his body had been full of at least 35 blood clots and inside the clots were sepial fungus. They said they could get rid of the fungus, but they would have to get rid of the clots first, and that could take months to do. Austin did not have months. He was swollen from head to stomach, and sometimes you could see blood at the edge of his eyes. He was not looking good, and you can see he was getting tired. He no longer held our fingers like he once did, and he just lay there lifeless, even though he had been off the drugs for a while. He would not wake up.

Then the news came that his head was swelling. Apparently he had a blood clot on the base of his brain blocking the blood from leaving his brain. They wanted to put drains in his head to take care of the blood problem. But they said there is a good chance that he would die in OR. They said a healthy child does not have a good chance of survival, so his were really not good. When we looked at our precious son we knew he was tired and it was time to just let him rest. I couldn’t put him through any more pain. My husband and I struggled on what was the best decision for him. After a lot of tears we decided to place him on comfort care, it was the hardest decision a parent would ever have to make, but we had to do what was best for him and not us. We left the vent on and continued his medication, but did not allow any more intervention. If he started to pass they were to call us. Four days later, on August 29, 2005 we received a phone call that it is time and for us to get there quick. We lived about 45minutes away so we called his godmother Suzy and asked her if she would go sit with him. We wanted someone that loved him as much as we did there with him if he passed away before we got there. When we got there we were a companied by his godfather Scott, godmother Suzy, and Janet a family friend. My husband and I went up to his room. We got him dressed in his coming home outfit, and as sad as it was he was going home just not with us. We talked to him and told him that we loved him so much, and we would really miss him. That he will always be in our heart and we would be okay. Then we had them take everything off of him. We did not want him to pass hooked up to wires and machines. My husband Mitch made sure they gave him plenty of drugs so he would not feel pain. And then we took turns rocking him. It was only the fourth time I held him and my husband’s 3rd. Mitch knew how important it was for me to be the one who held him as he passed. I was to first to hold him when he came into this world and I was going to hold him as left. It took him 15minutes and I fetl that he was in no pain. He gasped for a breath three times and on the third one he passed away. He looked so peaceful, like a little angel. My husband rocked him, and then I got my first and last dance with him. It felt like he was in heaven dancing with me. After Scott, Suzy, Janet, Joey (Mitch’s brother) and Mitch’s dad came in and held him too. When the time came to take him down Joey wanted to go with him, and it made my husband and I realize we could not let him go alone. So with a lot of persuading they let me sit in a wheel chair and carry him down. We took him into the morgue and gave him kisses and told him that someday we will all be together again. He service was beautiful; Mitch and I dressed him, did his hair, and arranged all of his tigers around his casket. It was our way of showing him to all those who never got to see him. His life was never easy but he was a strong fighter. We were not only proud, but also blessed to be his parents. Looking back on the experience it was a long roller coaster ride, but well worth it. We promised ourselves that as long he got one breath of life then we did him right, we did not let them talk us into aborting him when we were pregnant, because we knew he was special and deserved a chance. Austin was too precious to live on this earth. God had something else planned for him. He is now our angel. We knew that it was his time; we had to let him go to heaven so he could be hole again. We did not do it for ourselves. This was all about his quality of life. My husband and I may now live with a broken heart, but our son’s heart is whole again, and that’s what matters. We will never be the same people again, but we learned that family is what matter and nothing else. Austin will forever be remembered. He had such a huge impact on people’s lives. We thank you Austin forever thing you taught us, you are truly a miracle, and a beautiful angel. We know you are up there in heaven watching out for all the other heart babies. WE LOVE YOU!!!!

Makayla's Story: (Big Sister)

After what seemed to be a normal pregnancy I gave birth on April 8, 2002 to a beautiful seemingly healthy baby girl. It would only be after five years that we would fully understand the situations that led up to the day that changed our lives forever. It all began when Makayla was two weeks old and hospitalized for at the time we were told a simple viral infection. She was admitted for about three weeks of blood draws and spinal taps. Once again at three months old she started displaying signs that something was wrong and was admitted into the hospital. This time only staying for two weeks, we left with the same diagnoses of a viral infection. At 6months and 9 months she was readmitted for the same thing, each time we never got any answers other than they could not figure out what was causing her so many problems. This was sadly becoming the pattern of our lives and right after her first birthday we were back in the hospital demanding answering and feeling helpless that we could not fix whatever was wrong with our precious daughter. We watched time and time again these doctors poking her with needles. Throughout the first year she developed according but just seemed to have a week immune system and suddenly our hospitalizations stopped. All of the doctors chalked it up as her body getting stronger but I always feared there was something else going on. After that last hospital stay Makayla went on to develop into an intellectual little girl, with a love for learning and life.

Suddenly when she was three years old our words were turned upside down. We discovered that her little brother would be born with sever Multiple congenital Heart Defects. Makayla loved visiting her brother at the hospital and would sit and read him stories she memorized. After numerous procedures and open heart surgeries he passed away at fifty six days old. As heart breaking as this was we would later discover he was a blessing in disguise.

Then two years later everything started making sense. I can remember my daughters Kindergarten physical like it was just yesterday. It started like any other doctor visit, but quickly turned into a mother’s worst nightmare. Her doctor was listening to her heart and it seemed like it was forever when she turned to me and said “I didn’t know your daughter had a heart problem too.” Those words hit me like a ton of bricks and I froze, no words would come out of my mouth. I remember just wanting to grab my daughter and run far away from that place. When I looked at Makayla her eyes were filled with tears and she asked me, “Mommy am I going to die too.” You could see the fear in her eyes and the innocence in her heart. We sat quietly in the office while appointments were made to see a Cardiologist. From that point on everything seemed to happen so fast, it was like we were outsiders looking in. But for the first time in five years all of her past hospitalizations finally made sense, if the doctors would have taken the time to check her heart this could have all been fixed while she was a baby and not a little girl scared for her life. We spent the next few days preparing her for Cardiologist appointments and comforting her. The day came to meet the cardiologist and they gave us a diagnosis of a Large ASD. They were astonished that it was never found before then, because it was very obvious. They said that the right side of her heart was so enlarged it was working at the pace of a 35 year

s old smoking man’s heart. They weren’t even sure how she was functioning from day to day life and were surprised she hadn’t gone into cardiac heart failure yet. When we met with Dr. Bailey he said the whole was too large and lop sided too be fixed through a catherization and would need open heart surgery. Dr. Bailey had a way to him that made us all feel at peace, he was also our son Austin’s surgeon and we trusted him. When the day came for her surgery I remember Makayla looked at me and her dad with such strength in her eyes. She told us “Mommy and Daddy don’t worry God and Austin is with me, God will make sure I’m okay.” At that moment she seemed wise beyond her years and was wheeled away from us. The hours she spent in surgery seemed to be the longest hours of my life, pacing and wondering if she was okay. When we call the call from the OR that she was okay we rushed up to recovery in tim

e to see her coming down the hall. It was amazing how beautiful and full of color she looked. At that moment I realized that in the last five years she has never had so much color to her skin. She always looked pale, greyish and her eyes looked sunk in. God gave us or baby girl back! When she finally woke up her first words were “I told you I would be okay, now can I go home?” You could see the pain in her eyes but she hid it with a smile on her face. As soon as Dr. Bailey came in the room she asked him the same thing, and he said you have to walk first. So she said fine lets walk! A few hours after surgery she walked the halls slowly and crying in pain but she was determined to go home. Dr. Bailey told her she was a strong little girl and who was wise beyond her years. The next morning she was discharged from the hospital and recovered quickly. Makayla even got to start Kindergarten with all her friends.

Since her heart surgery she has had tubes placed in her ears, adenoidectomy, and tonsillectomy. Two years ago when she was seven they discovered that she has tricuspid valve regurgitation, mitral valve regurgitation and slightly enlarged right side of her heart. Makayla has decided to let God be in control of her life and always tells people God is watching out for her. When the time comes to get those valves replaced she said God will get her through it. Since her surgery Makayla has decided she wants to go to school to be like Doctor Bailey. She wants to save the lives of babies and kids, just like he saved hers and tried to save her brothers. When people tell her she doesn’t look sick, she always tells them it’s because you can’t see my heart. At nine years old Makayla has had to learn her limits and pay attention to her heart. She refuses to let her CHD control her life but knows she has certain limits. She loves her zipper (surgery scar) because it reminds her of what she went through and that she is part of a special group of kids who were handpicked by God. Not once has Makayla asked “why me”, but always says “God has a plan for all his children.” My daughter is my hero; her faith has taught me so much in life.

**CHD Awareness Week 2012...
Be Aware!**

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