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#EmmaStrong

$11,445 of $10,000 goal

Raised by 78 people in 11 months
Emma Grace was born on 5/15/17 at MUSC with a heart defect. She had her first open heart surgery at 7 days old. She has been hit with several setbacks and complications and has fought through each and everyone to still be here with us. She has had 5 procedures so far and several more to come over the coming months and years. We are incredibly fortunate to have health insurance as we are sure her medical bill is in the millions. This fund me page is to help with the annual of pocket deductible for this year and next and items not covered with our insurance.
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Emma had a busy week, she’s been doing ok lately but not really gaining enough weight. She’s been stuck around 4.2kg for a month. We had a family care conference last week and all decided it was time to send her back to the Cath lab, based on the results of the Cath lab we would determine our next surgery. The Cath lab was this past Wednesday they run wires and probes through her arteries into her heart and lungs and take readings and measurements. I wasn’t worried too much about the procedure itself although like everything it has it’s own risks, I was worried about the results. Sometimes not knowing you have cancer is better than being told you do. Months
ago we were told we had (3) options - a two ventricle repair which is the best option a single ventricle pathway or a total heart replacement. Having 3 options seemed like a good thing and gave us hope. As we learned more we realised that the heart transplant was not a good option at all, Emma’s best chance for a long happy life was to find a way to fix her own heart. She’s never really been a great candidate for a two ventricle repair so we pretty much knew she as going to be a single ventricle kid. The Cath lab Wednesday confirmed that, but our surgeon surprised us by deciding he wanted to do her surgery the next day instead of next week. I was ok with that since I get to freak out the same amount but just for one day instead of 8 while we waited. Her surgery yesterday went very well, it took 7 hours and they had to put her on a heart and lung bypass but didn’t have to stop her heart thankfully. The pressure in her lungs were too high for her to do the glen procedure so he removed her pulmonary artery from her heart, installed a shunt to control and reduce the pressure and flow of blood to her lungs and the. Attached that to her aorta. He made it sound simple, it’s not. She came through the surgery rock solid and came off the bypass machine with no issues thank god. She’s uncomfortable but very stable and we are managing her pain with a decent amount of sedation. It’s gonna take her a while to recover but we are hopeful this surgery will help her grow and come home until her next surgery next spring / summer. Just wanted to update everyone - thank you for all your love, support, prayers and thoughts they truly are appreciated
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Thank you everyone for your support, love and prayers! We are so very thankful for everything. Charleston Outlaws Rugby hosted a golf tourney for Emma last week to help raise $ and many donated here to help Us cover Emma’s medical costs, etc. The support has truly been amazing and humbling - We can’t thank everyone enough for the ❤️❤️❤️

Emma has had a good few weeks and is gaining weight. What’s crazy is our perspective of good, she currently has blood clots in both legs where she has her IV lines, a leaking IV, intermittent vomiting...

She’s currently 4.18KG and we really need her to get to a minimum of 5kg before her next heart surgery - come on Baby girl

#GrowEmmaGrow
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Emma had a procedure to remove her stent from her common bile duct. They put it in there during a procedure before her gall bladder surgery. Everything went well and hopefully this was her last procedure before her next heart surgery. She’s gained 30 oz. since her first ERCP on October 4th - that’s awesome

#EmmaStrong
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$11,445 of $10,000 goal

Raised by 78 people in 11 months
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JN
$100
Jo Anne Noack
8 months ago
JG
$250
James Gereghty
8 months ago
PF
$75
Peg Frost
8 months ago
ES
$200
Eric smith
9 months ago
PM
$50
Paul and Mary Miller
9 months ago
CB
$50
Chris Brown
9 months ago
$200
Noah and Jennifer Moore
9 months ago
JS
$100
Jackie Skorvanek
10 months ago
ML
$20
Martha Lewis
10 months ago
ED
$250
Edgar Decker
10 months ago
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