Help Madison Rylee!
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We welcomed baby Madison into the world on March 2nd and, to our surprise/relief, she is strong-willed and with us. Our little Madi has Trisomy 18. This chromosomal abnormality has been classified by the medical community as being "incompatible with life" but we do not believe this to be true. With her arrival, we have had great joy in loving her and spending as much time with her as possible.
Because of Madi's medical conditions, she requires 24/7 care. She has esophogeal atresia, meaning her esophogus does not connect to her stomach. Consequently, she is not able to feed normally and requres a central line for her nutrition. We have to change out her bag every night to maintain this. Also, since she is unable to swallow her secretions, we have to suction her mouth out regularly, so she does not aspirate. Along with this issue, she also has a ventricular septal defect (VSD), which is a hole in her heart. The hole occurs in the wall that separates the heart's lower chambers and allows blood to pass from the left to the right side of the heart. The oxygen-rich blood then gets pumped back to the lungs instead of out to the body, causing the heart to work harder. This is an issue that we will be dealing with in the long-term and are mainly focusing on her esophogeal atresia in the short-term. Because Trisomy 18 affects all aspects of the body, there may be other issues we are not aware of. We hope and pray that she is able to continue to fight for as long as she can.
Because Madi is fed through a central line, this makes feeding more difficult on a day to day basis. Her line will only be viable for a few weeks to a month so we will be making the decision to have a g-tube placed soon. This is a tube that will be surgically placed directly in her stomach so we can feed her with more ease and will have more longevity. With every surgery, there is a risk but with her condition, there is an increased risk. We ask for your prayers as we make this big decision.
Because her medical care will be costly, this is where we are asking for your help. Any donation you are able to make is much appreciated and will go directly to helping maintain Madi's care.
Thank you so much for your thoughts and prayers during this time. We have felt so much love and support and are very grateful to have our baby girl in our arms.
-Beau & Lisa
To read more about her story:
http://laurajudy.squarespace.com/blog/2015/3/11/newborn-madison-rylee-trisomy-18-awareness-parrish-fl
To learn more about Trisomy 18:
http://www.trisomy18.org/site/PageServer?pagename=whatisT18_whatis
Because of Madi's medical conditions, she requires 24/7 care. She has esophogeal atresia, meaning her esophogus does not connect to her stomach. Consequently, she is not able to feed normally and requres a central line for her nutrition. We have to change out her bag every night to maintain this. Also, since she is unable to swallow her secretions, we have to suction her mouth out regularly, so she does not aspirate. Along with this issue, she also has a ventricular septal defect (VSD), which is a hole in her heart. The hole occurs in the wall that separates the heart's lower chambers and allows blood to pass from the left to the right side of the heart. The oxygen-rich blood then gets pumped back to the lungs instead of out to the body, causing the heart to work harder. This is an issue that we will be dealing with in the long-term and are mainly focusing on her esophogeal atresia in the short-term. Because Trisomy 18 affects all aspects of the body, there may be other issues we are not aware of. We hope and pray that she is able to continue to fight for as long as she can.
Because Madi is fed through a central line, this makes feeding more difficult on a day to day basis. Her line will only be viable for a few weeks to a month so we will be making the decision to have a g-tube placed soon. This is a tube that will be surgically placed directly in her stomach so we can feed her with more ease and will have more longevity. With every surgery, there is a risk but with her condition, there is an increased risk. We ask for your prayers as we make this big decision.
Because her medical care will be costly, this is where we are asking for your help. Any donation you are able to make is much appreciated and will go directly to helping maintain Madi's care.
Thank you so much for your thoughts and prayers during this time. We have felt so much love and support and are very grateful to have our baby girl in our arms.
-Beau & Lisa
To read more about her story:
http://laurajudy.squarespace.com/blog/2015/3/11/newborn-madison-rylee-trisomy-18-awareness-parrish-fl
To learn more about Trisomy 18:
http://www.trisomy18.org/site/PageServer?pagename=whatisT18_whatis
Organisateur
Beau Sullivan
Organisateur
Fort Hamer, FL