He amazes us every day with his spirit!
Tuesday, February 5, 2013
Feb. 5- CHD Awareness- Brayden's Story
Brayden was born May 31, 2008 with a moderate VSD, pulmonary and aortic stenosis. He was able to thrive for over 2 years until August 2010. He then became winded very easily and it was discovered that there was a muscle in his heart that was over growing (thickening) and it was causing restriction to the blood flow to his lungs. He was suffocating. On September 24, 2010, he had his 1st open heart surgery to trim the muscle, repair the VSD and the Stenosis(s). For a reason still unknown, his heartbeat never came back after surgery. He was diagnosed with a total heart block. He then had a permanent pacemaker implanted on September 30, 2010. He now is as healthy as he can be. His pacemaker doesn't slow him down, if anything it gives him energy to keep going and going. We call him the energizer bunny, because he really is run on a battery. He is a funny, smart, breakdancing kid!
He amazes us every day with his spirit!
He amazes us every day with his spirit!
Monday, February 4, 2013
Feb. 4- CHD Awareness Story- Katie's Story
Katie was born on March 28, 2006 at Children's Healthcare of Atlanta at Egleston. We knew ahead of time that she would be born with Hypoplastic Left Heart Syndrome (HLHS). They were able to see at my 19 week ultrasound that she was missing one of the chambers of her heart. We traveled 3 1/2 hours from our home in Tennessee to Children's Healthcare of Atlanta for all 3 of her open heart surgeries and any other care that she may need that deals with her heart. Katie did wel,l for the most part, after her 1st two surgeries with little complications, but the Fontan was definitely a challenge. After the Fontan, we couldn't seem to get rid of pleural effusions around her lungs and even came home with pigtail catheters on each side that we had to drain every day at home. She was on the verge of being placed on the transplant list in Jan. 2010 when finally by the grace of God the fluid dried up. In her short life she has had 3 open heart surgeries, 8 heart caths, a g-tube placed due to a paralyzed vocal cord during her 1st surgery (it was removed on her 1st birthday), migraines, lots of medicine, and numerous hospital stays mostly due to the pleural effusions, She is doing well now. She is in 1st grade. She enjoyed playing softball and is now taking a dance class. She loves doing most things that a 6 year old little girl would do.
Sunday, February 3, 2013
Feb. 3- CHD Awareness Month- Wills Story
Feb. 3-CHD Awareness Month- Will's Story
I met this sweet family about a year ago. They were the only family to show up at our family It's My Heart Picnic in the Park here in Atlanta. We had a great time sharing stories about our journey with CHD. Will is such a fighter and his big sister pretty special too!
This is Will's story-
We went for our 20 week ultrasound excited to find out if we were having a boy or a girl. My parents had come along to share in the excitement. As I laid on the table and the nurse let us know that we were going to have a boy, she pointed out that she saw something on the ultrasound and she wanted the doctor to look at it. The doctor came in a few minutes later and let us know that something didn’t look quite right with the ultrasound and that he wanted us to hang around and talk with the cardiac specialist that was in the office that day. It took about an hour to get in with the cardiac specialist, but he basically said that my son’s heart had something wrong with it and that we would have to monitor it the entire pregnancy. All he could identify was a hole is his heart and a possible valve problem. My heart sunk knowing that my perfect baby boy had something wrong with him and I wasn’t even sure exactly what was wrong. I have never cried so much in my life and my whole family was heart-broken finding out the news.
Over the next 4 months I had numerous cardiac ultrasound appointments to monitor my son’s growth and the development of his heart. Each appointment was exhausting and nerve wracking worrying about what else the doctor’s may find wrong with my son’s heart. His diagnosis went from just a hole in his heart with a valve problem to include a problem with his pulmonary vein and a possible interrupted aortic arch.
At one point in the process of monitoring the cardiac prognosis of my son’s heart the doctors informed us that about 50% of the time heart babies can have a syndrome known as Digeorge syndrome. I was crushed thinking that I would have to deal with all this at one time and still try to raise a baby. I am the type of person that has to know so we had an amniocentosis done so we would know exactly what we were dealing with. Thankfully the test showed that his genetic makeup did not show the chromosomal deformity.
My son was born August 11, 2011 and he was a healthy 7lbs 1 oz and 20 inches long. He looked completely healthy and no one would have known otherwise if it wasn’t for the massive amount of doctors and nurses in the delivery room awaiting Will’s arrival so they could scoop him up and take him to the ICU. I think we got about 10 minutes with him as best I remember since it was such a whirlwind. We barely had time to get just a few pictures before he was taken away.
The cardiac doctors had informed us that until he was born they would not know the full extent of his defect. It took over 3 hours before the doctors were able to inform us that he did in fact have the interrupted aortic arch in addition to a hole in his heart, a small valve leading from the heart to the aorta, a problem with his pulmonary vein, and stenosis (narrowing) of his aortic arch.
He was transferred to Sibley Heart Center when he was only a day old and his big sister got to meet him for the first time that day. I think that was one of the hardest parts of the whole experience. I didn’t get to let my daughter have that special moment with her baby brother after he was born, she had to look at him through his travel capsule and she couldn’t even touch him. It broke my heart again.
We waited several days once he got to Sibley to find out when his surgery would be performed. He had the surgery when he was 6 days old. It lasted 6 hours and thankfully it was completely successful. Dr. Kogon performed the surgery and he called it a complete repair of his heart. Will stayed in the cardiac ICU for 7 more days and then he was transferred to the step down unit where I was able to spend the night with him, which was the greatest gift I could have had at the time. I had to learn how to use the feeding tube and care for his wound correctly. He did so great with his eating and recovery that we were able to go home after only two days here.
We have had several follow up appointments with the local cardiologist and thankfully each one has gotten progressively better. This last visit in November, the doctor told us we could go another 9 months before he needed to see us again and that his heart had grown enough that his stenosis has improved a good deal.
We have had to involve a physical therapist after my son wasn’t able to sit at 6 months of age and was falling behind on his gross motor skills. It has been 10 months that we have been working with her and Will has mastered sitting, crawling, cruising, and now walking. I never knew how far behind he was until the therapist intervened. The therapist feels like by the time Will turns 3 years old he will be at the same point as other children his age.
I met this sweet family about a year ago. They were the only family to show up at our family It's My Heart Picnic in the Park here in Atlanta. We had a great time sharing stories about our journey with CHD. Will is such a fighter and his big sister pretty special too!
This is Will's story-
We went for our 20 week ultrasound excited to find out if we were having a boy or a girl. My parents had come along to share in the excitement. As I laid on the table and the nurse let us know that we were going to have a boy, she pointed out that she saw something on the ultrasound and she wanted the doctor to look at it. The doctor came in a few minutes later and let us know that something didn’t look quite right with the ultrasound and that he wanted us to hang around and talk with the cardiac specialist that was in the office that day. It took about an hour to get in with the cardiac specialist, but he basically said that my son’s heart had something wrong with it and that we would have to monitor it the entire pregnancy. All he could identify was a hole is his heart and a possible valve problem. My heart sunk knowing that my perfect baby boy had something wrong with him and I wasn’t even sure exactly what was wrong. I have never cried so much in my life and my whole family was heart-broken finding out the news.
Over the next 4 months I had numerous cardiac ultrasound appointments to monitor my son’s growth and the development of his heart. Each appointment was exhausting and nerve wracking worrying about what else the doctor’s may find wrong with my son’s heart. His diagnosis went from just a hole in his heart with a valve problem to include a problem with his pulmonary vein and a possible interrupted aortic arch.
At one point in the process of monitoring the cardiac prognosis of my son’s heart the doctors informed us that about 50% of the time heart babies can have a syndrome known as Digeorge syndrome. I was crushed thinking that I would have to deal with all this at one time and still try to raise a baby. I am the type of person that has to know so we had an amniocentosis done so we would know exactly what we were dealing with. Thankfully the test showed that his genetic makeup did not show the chromosomal deformity.
My son was born August 11, 2011 and he was a healthy 7lbs 1 oz and 20 inches long. He looked completely healthy and no one would have known otherwise if it wasn’t for the massive amount of doctors and nurses in the delivery room awaiting Will’s arrival so they could scoop him up and take him to the ICU. I think we got about 10 minutes with him as best I remember since it was such a whirlwind. We barely had time to get just a few pictures before he was taken away.
The cardiac doctors had informed us that until he was born they would not know the full extent of his defect. It took over 3 hours before the doctors were able to inform us that he did in fact have the interrupted aortic arch in addition to a hole in his heart, a small valve leading from the heart to the aorta, a problem with his pulmonary vein, and stenosis (narrowing) of his aortic arch.
He was transferred to Sibley Heart Center when he was only a day old and his big sister got to meet him for the first time that day. I think that was one of the hardest parts of the whole experience. I didn’t get to let my daughter have that special moment with her baby brother after he was born, she had to look at him through his travel capsule and she couldn’t even touch him. It broke my heart again.
We waited several days once he got to Sibley to find out when his surgery would be performed. He had the surgery when he was 6 days old. It lasted 6 hours and thankfully it was completely successful. Dr. Kogon performed the surgery and he called it a complete repair of his heart. Will stayed in the cardiac ICU for 7 more days and then he was transferred to the step down unit where I was able to spend the night with him, which was the greatest gift I could have had at the time. I had to learn how to use the feeding tube and care for his wound correctly. He did so great with his eating and recovery that we were able to go home after only two days here.
We have had several follow up appointments with the local cardiologist and thankfully each one has gotten progressively better. This last visit in November, the doctor told us we could go another 9 months before he needed to see us again and that his heart had grown enough that his stenosis has improved a good deal.
We have had to involve a physical therapist after my son wasn’t able to sit at 6 months of age and was falling behind on his gross motor skills. It has been 10 months that we have been working with her and Will has mastered sitting, crawling, cruising, and now walking. I never knew how far behind he was until the therapist intervened. The therapist feels like by the time Will turns 3 years old he will be at the same point as other children his age.
Saturday, February 2, 2013
Feb. 2- CHD Awareness- Owen's Story
Owen's journey began when he was just 47 hours old, when he underwent surgery to correct a Congential Heart Defect called Tranposition of the Great Arteries. His condition was life-threatening and required immediate open-heart-surgery to reverse the pulmonary and aorta arteries. He spent 8 days at CHOA-Egleston, where he continued to improve day after day. He pulled through like a champ and the surgeons considered his surgery a success. He will be required to see a cardiologist annually, but his long-term prognosis is good. Owen is now a 3 year old that loves to run, play, and eat lots and lots of chocolate. Owen brings his family much joy and reminds them of their blessings all of the time.
Friday, February 1, 2013
Kickin' off CHD Awareness Month-My Hero-Olivia's story
What is a Hero? A hero can be many different things depending on who you ask. To some their parents may be their heros, to others it may be superman or a football star. Often times you see children pretend to be hero’s on the playground. But to me, my hero is my ten year old daughter, Olivia. And she doesn’t pretend to be a hero, she is one. She was born on December 19, 2002. This would be the day that we would learn that she was born with several rare Congenital Heart Defects. The day she was born was the day that she began to fight for her life. She has gone through more in her ten years than most do in a lifetime. She was born with Coarctation of the aorta, pulmonary stenosis, mitral valve stenosis, and an enlarged heart. She endured open heart surgery at 6 months of age to repair two of her defects where she remained in the hospital for 3 weeks and has had her second open heart surgery this past May to replace her pulmonary valve and remove a muscle bundle in the left ventricle-something the doctors have never seen before. Every day she takes numerous amounts of meds and has some limitations on what she can and cannot do. But she always smiles and tries her best not to cry and be brave when she gets a poke or test. She shows so much strength and bravery everyday of her life. She is the toughest little girl I know. In addition to her heart defects she also is going through testing for an enlarged liver and spleen and a possible bleeding disorder. You would never know by meeting her that she goes through all of this every day. She shows her courage, hope and strength through her laughter, tears and all of her energy despite her illness, for that she is my biggest Hero, my warrior. Each child is born and most believe with a predetermined path created by God. Not one journey is the same and I believe when you add the element of a congenital heart defect to a child– you have a Heart Hero. I am reminded that when I get down and feel like giving up of what she goes through and I know that I can get through it. No matter what comes her way she endures it and moves on to the next and never complains, always smiling, a true hero. My heart hero.
Wear Red Day
Today is National wear red day! Today we wear red for all those affected with congenital heart defects and heart disease. Will you wear red in honor of those affected? I wear red for my daughter Olivia who was born with multiple congenital heart defects.
Today also marks the start of CHD Awareness month. CHD is the number 1 birth defect and affects 1 in 100 births. Each day for the month of Feb. I will be sharing a CHD story in hopes of helping to bring awareness. We have lots going on this month so Stay tuned!
Today also marks the start of CHD Awareness month. CHD is the number 1 birth defect and affects 1 in 100 births. Each day for the month of Feb. I will be sharing a CHD story in hopes of helping to bring awareness. We have lots going on this month so Stay tuned!
Monday, November 12, 2012
Nominate your favorite Health Activists for a WEGO Health Activist Award
WEGO Health is an online network of people like you and me – people who use the internet and social media to connect around health and share health information. They call us Health Activists and have created a special awards program to recognize those Health Activists who are making a real difference in the online health community: http://info.wegohealth.com/awards_a11
I’ve signed up to be an Awards Ambassador which means that I’m doing what I can to share the WEGO Health Activist Awards with my audience and make sure that all Health Activists are recognized for the efforts they make every day.
Please take a moment to visit the nominations page and recognize your favorite health leaders: http://info.wegohealth.com/awards_a11
There is no limit to how many people you can nominate so make sure to recognize everyone that you follow, fan, or friend. WEGO Health has 12 different categories so everyone should fit somewhere!
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