http://corashopesanddreams.org Congenital Heart Disease Research, Resources and Information Wed, 11 Apr 2012 00:58:23 +0000 hourly 1 http://wordpress.org/?v=3.3.2 http://corashopesanddreams.org/newborn-screening-read-about-screening-before-giving-birth-a-cute-cora-picture/#comment-147 Amanda Rose Adams Wed, 11 Apr 2012 00:58:23 +0000 http://corashopesanddreams.org/?p=115#comment-147 Have no shame, have pride for what you've learned and how you're helping others with your knowledge! I'm so proud of you!!! Have no shame, have pride for what you’ve learned and how you’re helping others with your knowledge! I’m so proud of you!!!

]]> http://corashopesanddreams.org/heart-warriors-book-review-the-must-read-for-any-chd-family/#comment-131 Brandi Wed, 04 Apr 2012 14:03:09 +0000 http://corashopesanddreams.org/?p=105#comment-131 My soon to be 1 year old (yay!) was born May 2nd with double inlet single ventricle, dextrocardia, pulmonary atresia, and stenosis of the LPA. She had a BT Shunt placed at a week old and an emergency cath to place two stents in her LPA around 4 weeks old. In Nov. she had her Glenn and LPA reconstruction. She is 5 months post Glenn and doing AMAZING! We are not done. We have a cath in June/July to continue to work on her LPA and of course have the Fontan. We will never have a last surgery and her heart will never be fixed. But, God has blessed us with an amazing little girl and we will cherish each and every moment. My soon to be 1 year old (yay!) was born May 2nd with double inlet single ventricle, dextrocardia, pulmonary atresia, and stenosis of the LPA. She had a BT Shunt placed at a week old and an emergency cath to place two stents in her LPA around 4 weeks old. In Nov. she had her Glenn and LPA reconstruction. She is 5 months post Glenn and doing AMAZING! We are not done. We have a cath in June/July to continue to work on her LPA and of course have the Fontan. We will never have a last surgery and her heart will never be fixed. But, God has blessed us with an amazing little girl and we will cherish each and every moment.

]]> http://corashopesanddreams.org/heart-warriors-book-review-the-must-read-for-any-chd-family/#comment-130 Terra Wed, 04 Apr 2012 13:24:10 +0000 http://corashopesanddreams.org/?p=105#comment-130 I forgot to add that I am entering this on Rafflecopter as well. I forgot to add that I am entering this on Rafflecopter as well.

]]> http://corashopesanddreams.org/heart-warriors-book-review-the-must-read-for-any-chd-family/#comment-129 Terra Wed, 04 Apr 2012 13:20:28 +0000 http://corashopesanddreams.org/?p=105#comment-129 I am the proud mother of four beautiful girls. My youngest, Ava, was born 10/5/2010 via c-section. We did not know of any issues before her birth. Living in a small rural community, as soon as they heard the murmur, they had her immediately sent to a large children's hospital. She was born with Atrial Septal Defect, two Ventricular Septal Defects, Coarctation of the Aorta and Bicuspid Aortic Valve. I can not begin to describe the feelings of sending your child to open heart surgery. She will face another surgery in her life to repair the Aortic Valve. I am the proud mother of four beautiful girls. My youngest, Ava, was born 10/5/2010 via c-section. We did not know of any issues before her birth. Living in a small rural community, as soon as they heard the murmur, they had her immediately sent to a large children’s hospital. She was born with Atrial Septal Defect, two Ventricular Septal Defects, Coarctation of the Aorta and Bicuspid Aortic Valve. I can not begin to describe the feelings of sending your child to open heart surgery. She will face another surgery in her life to repair the Aortic Valve.

]]> http://corashopesanddreams.org/heart-warriors-book-review-the-must-read-for-any-chd-family/#comment-123 ashley coffey Fri, 30 Mar 2012 16:39:52 +0000 http://corashopesanddreams.org/?p=105#comment-123 My daughter Kaylyn was born in 2007 and was born with a mitral valve regurgitation and a enlarged heart. She spent almost her entire first yr of life in the hospital and going through different procedures and failure to thrive. At a yr old she was the size of a 5 month old. But today she is still little and still has regular appts with her cardiologist. But she is doing better than we could have expected. I know without all the knowledge and things that I found through support groups and online I could not have gotten through allot of it. My daughter Kaylyn was born in 2007 and was born with a mitral valve regurgitation and a enlarged heart. She spent almost her entire first yr of life in the hospital and going through different procedures and failure to thrive. At a yr old she was the size of a 5 month old. But today she is still little and still has regular appts with her cardiologist. But she is doing better than we could have expected. I know without all the knowledge and things that I found through support groups and online I could not have gotten through allot of it.

]]> http://corashopesanddreams.org/heart-warriors-book-review-the-must-read-for-any-chd-family/#comment-122 diane e kowalik Fri, 30 Mar 2012 00:42:30 +0000 http://corashopesanddreams.org/?p=105#comment-122 I was born in 1957 with multiple health issues. The Hemi-vertebrae caused Scoliosis, half left lung, Absent Left Pulmonary Artery, and PDA. They could not do a cath until i was 10, at which time they could not fix the PDA, due to high pressures. It was then they found the Absent left PA, but for years they thought it was possibly Hypoplastic. Thankfully in the last 10 years, there has been an increase in Pulmonary Hypertension research. After a Right Heart Catherization, i am now being treated with Tracleer. It has helped somewhat. I was born in 1957 with multiple health issues. The Hemi-vertebrae caused Scoliosis, half left lung, Absent Left Pulmonary Artery, and PDA. They could not do a cath until i was 10, at which time they could not fix the PDA, due to high pressures. It was then they found the Absent left PA, but for years they thought it was possibly Hypoplastic. Thankfully in the last 10 years, there has been an increase in Pulmonary Hypertension research. After a Right Heart Catherization, i am now being treated with Tracleer. It has helped somewhat.

]]> http://corashopesanddreams.org/heart-warriors-book-review-the-must-read-for-any-chd-family/#comment-118 Joye Thu, 29 Mar 2012 17:01:46 +0000 http://corashopesanddreams.org/?p=105#comment-118 Our CHD journey began the day Ethan was born, March 8th, 2009. He was seemingly healthy at birth, and held his own for about 8 hours. At that point, the doctors discovered that he had a heart defect known as Pulmonary Atresia with VSD. He was rushed to another hospital where he had his first open heart surgery at 3 days old. He has since survived a dozen other surgeries and procedures (heart and otherwise), as well as full cardiac and pulmonary arrest. At 3 years old, he is amazing in every sense of the word! Our CHD journey began the day Ethan was born, March 8th, 2009. He was seemingly healthy at birth, and held his own for about 8 hours. At that point, the doctors discovered that he had a heart defect known as Pulmonary Atresia with VSD. He was rushed to another hospital where he had his first open heart surgery at 3 days old. He has since survived a dozen other surgeries and procedures (heart and otherwise), as well as full cardiac and pulmonary arrest. At 3 years old, he is amazing in every sense of the word!

]]> http://corashopesanddreams.org/heart-warriors-book-review-the-must-read-for-any-chd-family/#comment-117 Dawn Bent Thu, 29 Mar 2012 16:52:23 +0000 http://corashopesanddreams.org/?p=105#comment-117 Natalie will be 5 in 3 weeks. I can't believe it. When I found out her diagnosis at 2 weeks old, I thought it meant a death sentence. She lives with half of a heart- Tricuspid Atresia to be a little more specific. 2 open heart surgeries and 2 heart catheterizations later, this kid is full steam ahead. She is feisty, full of life, and cracks me up. As dramatic as it sounds, she's a walking miracle. She's always finding ways to reassure us that she's got this whole CHD thing. She's the one that's allowed us to treat her just like a normal child because she has sailed through this whole journey with minor bumps. I can't believe, to this day, how well she's doing. It's not we've expected worse, it's just that we expected something different. Happily, she has proved us wrong and I love that. I'm not saying that sitting by her bedside with numerous drainage tubes and wires wasn't hard, but she's bounced back with such brute force that those images become easier for us to remember and even look back on. Our family has been extremely blessed. Extremely. Natalie will be 5 in 3 weeks. I can’t believe it. When I found out her diagnosis at 2 weeks old, I thought it meant a death sentence. She lives with half of a heart- Tricuspid Atresia to be a little more specific. 2 open heart surgeries and 2 heart catheterizations later, this kid is full steam ahead. She is feisty, full of life, and cracks me up. As dramatic as it sounds, she’s a walking miracle. She’s always finding ways to reassure us that she’s got this whole CHD thing. She’s the one that’s allowed us to treat her just like a normal child because she has sailed through this whole journey with minor bumps. I can’t believe, to this day, how well she’s doing. It’s not we’ve expected worse, it’s just that we expected something different. Happily, she has proved us wrong and I love that. I’m not saying that sitting by her bedside with numerous drainage tubes and wires wasn’t hard, but she’s bounced back with such brute force that those images become easier for us to remember and even look back on. Our family has been extremely blessed. Extremely.

]]> http://corashopesanddreams.org/heart-warriors-book-review-the-must-read-for-any-chd-family/#comment-116 T'Nell Page Thu, 29 Mar 2012 15:41:54 +0000 http://corashopesanddreams.org/?p=105#comment-116 My son was born with HLHS. We had found out while I was pregnant and had the opportunity to research different options for care. However, even with all of that, we still were not prepared for the amount of difficulties he would experience in his first and third surgeries. He went into heart failure when he was three, and placed on a transplant list. One year and two weeks later exactly, he got a new heart. He is one year post transplant, and is mostly doing well. Currently, we found out he is showing small signs of rejection again, and is fighting pneumonia. However, he has been more active, enjoying school, making friends, and living life to the fullest more than he could in the past. Jesus has brought him through so much and I know my son is in the palm of His hand. My son was born with HLHS. We had found out while I was pregnant and had the opportunity to research different options for care. However, even with all of that, we still were not prepared for the amount of difficulties he would experience in his first and third surgeries. He went into heart failure when he was three, and placed on a transplant list. One year and two weeks later exactly, he got a new heart. He is one year post transplant, and is mostly doing well. Currently, we found out he is showing small signs of rejection again, and is fighting pneumonia. However, he has been more active, enjoying school, making friends, and living life to the fullest more than he could in the past. Jesus has brought him through so much and I know my son is in the palm of His hand.

]]> http://corashopesanddreams.org/heart-warriors-book-review-the-must-read-for-any-chd-family/#comment-115 Marie Hatcher Thu, 29 Mar 2012 13:01:20 +0000 http://corashopesanddreams.org/?p=105#comment-115 Kristine, I entered the CHD Community on April 15th, 2008 while sitting at a targeted ultrasound!! I was blindsided, scared and a multitude of emotions. Matthew was born on August 6th, 2008 and my life has never been the same! He is a single ventricle and has undergone 3 cardiac caths and 3 open heart surgeries as well as an abdominal surgery. Raising awareness to this #1 Birth Defect and advocating for Pulse Ox Screening in my home State of Connecticut has now become part of my life through Matthew's Hearts of Hope, an organzation I founded just last year in honor of Matthew. I am inspired every day by amazing mothers like Kristine and Amanda and CHD warriors and angels. I am part of this amazing community forever and hope I can make a small impact to make the future better for CHD children and families! Kristine,
I entered the CHD Community on April 15th, 2008 while sitting at a targeted ultrasound!! I was blindsided, scared and a multitude of emotions. Matthew was born on August 6th, 2008 and my life has never been the same! He is a single ventricle and has undergone 3 cardiac caths and 3 open heart surgeries as well as an abdominal surgery. Raising awareness to this #1 Birth Defect and advocating for Pulse Ox Screening in my home State of Connecticut has now become part of my life through Matthew’s Hearts of Hope, an organzation I founded just last year in honor of Matthew. I am inspired every day by amazing mothers like Kristine and Amanda and CHD warriors and angels. I am part of this amazing community forever and hope I can make a small impact to make the future better for CHD children and families!

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