Help Madison Rylee!

$12,027 of $15,000 goal

Raised by 158 people in 53 months
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

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We were released from the hospital Saturday and had a good first night and day back at home! We were able to sleep through the night without having to watch Madi constantly, which is a huge blessing. We are still weening her off of the IV fluids and increasing her formula intake each day. Please pray she continues to tolerate the formula and starts to gain weight. We cannot thank you enough for your donations and support!
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We are happy to report that Madison is doing well and recovering in the ICU! The surgeon said everything went well and she was taken off the ventilator in the OR! They have started formula feeds slowly so we are hoping she continues to tolerate those with ease. We may even get to go home at the end of the week! Thank you again to everyone for your thoughts, prayers, and donations! We feel so blessed!
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This Tuesday, Madi is scheduled for surgery to place a gastrostomy tube (g-tube) which is a feeding tube directly into the stomach as well as a fix to her esophagus to help manage her secretions. The surgery will take about an hour. Please pray for her safety during surgery, the doctor's hands, that she will be weened off anesthesia and the ventilator with ease, and for us as we wait anxiously for her. This wasn't a decision we came to lightly but because of her esophageal abnormalities, this is basically our only option to give her the nutrition she needs. Thank you so much for all of your donations, prayers, and support! We don't know where we would be without it.
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Thank you to everyone for you continued support and prayers. Lisa, Madi and I are so grateful to everyone.
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Read a Previous Update
Rusty 'Sully' Sullivan
53 months ago

But Jesus looked at them and said to them, "With men this is impossible, but with God all things are possible."--Matthew 19:26

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$12,027 of $15,000 goal

Raised by 158 people in 53 months
Created March 10, 2015
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AB
$50
Andy Barrett
48 months ago

It's heartwarming to see how much your little girl is loved

$100
Anonymous
51 months ago (Monthly Donation)
$200
Anonymous
51 months ago
FG
$100
Felicia Gledhill
51 months ago

Prayers are with you and your family.

AL
$25
Amy Leach
51 months ago

Madi is a true miracle of God. Wish I could help more. God bless you all.

$25
Anonymous
51 months ago (Monthly Donation)
$25
Anonymous
52 months ago (Monthly Donation)
$100
Anonymous
52 months ago (Monthly Donation)
MD
$50
Monique DeCesare
52 months ago

She is beautiful! Thinking of you and your family.

RC
$62
Rikki Callantine
52 months ago
Rusty 'Sully' Sullivan
53 months ago

But Jesus looked at them and said to them, "With men this is impossible, but with God all things are possible."--Matthew 19:26

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