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After being on home bedrest for 6 weeks and hospital bedrest for 4 weeks, Addison was finally born on July 17th, 2006 at 36 ˝ weeks (9 minutes before her twin brother, Logan.) She spent two extra days in the PCN for cyanotic issues which were determined to be reflux related. She came home on July 21st as a happy and seemingly healthy newborn, while her brother spent 4 weeks in the NICU. By the time she was 2 months old, she was showing a preference for staying elevated in the bouncy chair, eating very little, vomiting frequently and exhibiting significant retraction with her breathing. When all of these issues were brought to the pediatrician's attention, she attributed it all to Addison's reflux and instructed us to increase her reflux medication. Just before her 4 month well-baby check, she went to see a different pediatrician for a sick-baby appointment and it was then that a problem with her heart was detected. We were at the doctor's office for over 2 hours while he listened to her heart and, when he sent us immediately to the cardiologist, we knew it wasn't good.
After taking a brief medical history, the cardiologist said 'this doesn't sound good.' He then performed an echocardiogram and said 'this is what I was afraid of.' On November 15th, 2006 our lives changed dramatically with the news that our healthy little Angel's heart was failing and she had a diagnosis of dilated cardiomyopathy. After being classified as a 'fragile baby,' we went home to pack a bag for our trip to the hospital - 4 nights in the PICU at St. Mary's Hospital and then 4 nights in the PICU at UVA. Once Addison was stable and transitioned to oral medications, she came home on Thanksgiving Day, 2006 - we were very thankful!
Since our discharge home, we have been fortunate to have had only one additional hospital stay, non-cardiac related, when she was 12 months old. In January, 2007 Addison was put on the transplant list as a 'status 2' but because she was doing so well, clinically, she was changed to a 'status 7,' at the end of April, 2007 (where she is currently listed.) Who knows what her future holds……….probably a transplant one day; but, we are taking it one day at a time. And, with each day a transplant is prolonged it allows for advances in medical technology as well as for her to grow bigger.
It has been, and continues to be, an emotional journey for all of us but she brings such joy to our lives that we wouldn't change a thing! She is full of energy and she has a typical toddler attitude. We pray daily for her continued 'good health' and we are thankful for each day we have with her as she truly is a blessing. We are also very thankful that she is under the wonderful care of such a professional and compassionate cardiologist.
Through this whole experience, we've learned to transform our emotional energy into advocating for our little girl. And, as sick as she may appear on the inside, Addison is a very active, fun-loving, and resilient 18 month old little girl with a big heart (no pun intended!)
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Addison
After being on home bedrest for 6 weeks and hospital bedrest for 4 weeks, Addison was finally born on July 17th, 2006 at 36 ˝ weeks (9 minutes before her twin brother, Logan.) She spent two extra days in the PCN for cyanotic issues which were determined to be reflux related. She came home on July 21st as a happy and seemingly healthy newborn, while her brother spent 4 weeks in the NICU. By the time she was 2 months old, she was showing a preference for staying elevated in the bouncy chair, eating very little, vomiting frequently and exhibiting significant retraction with her breathing. When all of these issues were brought to the pediatrician's attention, she attributed it all to Addison's reflux and instructed us to increase her reflux medication. Just before her 4 month well-baby check, she went to see a different pediatrician for a sick-baby appointment and it was then that a problem with her heart was detected. We were at the doctor's office for over 2 hours while he listened to her heart and, when he sent us immediately to the cardiologist, we knew it wasn't good.
After taking a brief medical history, the cardiologist said 'this doesn't sound good.' He then performed an echocardiogram and said 'this is what I was afraid of.' On November 15th, 2006 our lives changed dramatically with the news that our healthy little Angel's heart was failing and she had a diagnosis of dilated cardiomyopathy. After being classified as a 'fragile baby,' we went home to pack a bag for our trip to the hospital - 4 nights in the PICU at St. Mary's Hospital and then 4 nights in the PICU at UVA. Once Addison was stable and transitioned to oral medications, she came home on Thanksgiving Day, 2006 - we were very thankful!
Since our discharge home, we have been fortunate to have had only one additional hospital stay, non-cardiac related, when she was 12 months old. In January, 2007 Addison was put on the transplant list as a 'status 2' but because she was doing so well, clinically, she was changed to a 'status 7,' at the end of April, 2007 (where she is currently listed.) Who knows what her future holds……….probably a transplant one day; but, we are taking it one day at a time. And, with each day a transplant is prolonged it allows for advances in medical technology as well as for her to grow bigger.
It has been, and continues to be, an emotional journey for all of us but she brings such joy to our lives that we wouldn't change a thing! She is full of energy and she has a typical toddler attitude. We pray daily for her continued 'good health' and we are thankful for each day we have with her as she truly is a blessing. We are also very thankful that she is under the wonderful care of such a professional and compassionate cardiologist.
Through this whole experience, we've learned to transform our emotional energy into advocating for our little girl. And, as sick as she may appear on the inside, Addison is a very active, fun-loving, and resilient 18 month old little girl with a big heart (no pun intended!)
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