- Congenital Heart Defects are the #1 birth defect and are the #1 cause of birth defect related deaths. Source: March of Dimes
- About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year) Source: Children’s Heart Foundation
- Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. Source: Children’s Heart Foundation
- This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation
- Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation
- Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood. Source: March of Dimes
- It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications. Source: March of Dimes
Wednesday, September 23, 2009
Is It Ever Really "Gone"?
By "It" I mean Amelia's heart defect. John and I seem to have a battle between "it's over and gone" and "she will always have a heart defect". I'm sure you can guess that I am the latter of the two opinions. When I tell people about Amelia's heart defect, I never know whether to say "has" or "had". She has a "different" heart....she will always have a different heart. Her mitral and tricuspid valves are her own tissues, but they are artificially created. She has a patch between the two atria and a patch between the two ventricles. This tells me her defect is never "gone"; her valves could leak; she still has holes at the site where they sutured the patches and these holes could never heal and may need to be fixed...how can I not think about her heart every single day?
We went to the Pediatrician today to get Amelia's second flu shot. The good news: she didn't cry one bit (which shocked the nurse and made his day!); the bad news: she's lost a little bit of weight (only a few ounces). Of course, the first thing I think is "is her heart ok"? I have to stop and remind myself that she was weighed on a different scale last time, she has been more mobile, her eating is not "perfect" in that it's not a strict amount of formula each day because she is eating less formula and more "big" people food now. My mind still flips around between the "what ifs".
It's hard, as a mom, to not think about the "what ifs" all of the time. I can't imagine what I would do if I did not have Amelia in my life. I looked at her today and said "thank you for being my daughter. I don't know what I did in life to deserve you, but I am so glad I did it." I honestly thank God every day that I did something right in His eyes and he blessed John and I with my "Mia Bella", my "Mia Bedia", my angel, my "pretty pretties".
I would never wish what our family has been through on my worst enemy. Some people think I am "dwelling" on her heart defect by starting a chapter and working with It's My Heart. I see it as an opportunity to help other families in the same situation and to hopefully see the day that no family and no child EVER have to experience a CHD.
I guess I have answered my own question. No, it is never "gone". It is never going to be something I don't think about ~ but I don't dwell, I let it allow me to love my daughter that much more and to support and empathize with others in the same situation.
We went to the Pediatrician today to get Amelia's second flu shot. The good news: she didn't cry one bit (which shocked the nurse and made his day!); the bad news: she's lost a little bit of weight (only a few ounces). Of course, the first thing I think is "is her heart ok"? I have to stop and remind myself that she was weighed on a different scale last time, she has been more mobile, her eating is not "perfect" in that it's not a strict amount of formula each day because she is eating less formula and more "big" people food now. My mind still flips around between the "what ifs".
It's hard, as a mom, to not think about the "what ifs" all of the time. I can't imagine what I would do if I did not have Amelia in my life. I looked at her today and said "thank you for being my daughter. I don't know what I did in life to deserve you, but I am so glad I did it." I honestly thank God every day that I did something right in His eyes and he blessed John and I with my "Mia Bella", my "Mia Bedia", my angel, my "pretty pretties".
I would never wish what our family has been through on my worst enemy. Some people think I am "dwelling" on her heart defect by starting a chapter and working with It's My Heart. I see it as an opportunity to help other families in the same situation and to hopefully see the day that no family and no child EVER have to experience a CHD.
I guess I have answered my own question. No, it is never "gone". It is never going to be something I don't think about ~ but I don't dwell, I let it allow me to love my daughter that much more and to support and empathize with others in the same situation.
Saturday, September 19, 2009
Where has a year gone?
In keeping with my "holy cow, Amelia is almost one" theme....today I made a "Save the Date" email for her first birthday. I still can't grasp the fact that she is going to be one in just over 2 months. I remember last year at this time I had just had my baby shower and I was SO ready to meet my baby girl. I spent nine months wishing for time to go faster and now I have spent the last 9 months wishing it would sloooowww doooowwnn. I enjoy spending time with Amelia and I miss her when she goes to bed at night! She has such a cute personality - she is "dancing" when she hears music or we sing to her; she claps her hands when you say "yay, Amelia!"; she drinks from a straw; she is starting to eat "big girl" food (she had hummus for the first time today and loved it); and she is babbling like crazy. I feel like I am going to wake up tomorrow and she is going to be 16 and wanting the car keys. I am so excited to see the person she is going to become, but at the same time I am so sad that I can't just freeze frame our life right now. I just do what I can to make every moment mean something and to enjoy every millisecond with my little girl.
Wednesday, September 2, 2009
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