Emmie Rae Carr was born after difficult delivery on November 20, 2017.
Her family’s joy at her arrival quickly turned to concern when tests at the hospital revealed the presence of several holes in her heart. Further testing confirmed that these holes were large and closing them would require open heart surgery.
In the months that followed, Emmie and her family, two sisters, two dogs, and her parents, tried to maintain a normal life. Unfortunately this was made more difficult in January by the news that Emmie had gone into congestive heart failure. At this point maintaining her care became a full time job, and her mother Mandi has had to take unpaid leave from work to meet the needs of her daughter. Her father Eric had also had to take a great deal of time off of work to support his wife and baby girl during this time.
The good news is that surgery will correct many if not all of the issues Emmie has. Unfortunately there have been multiple setbacks which have delayed this procedure. First, Emmie needs to gain more weight; at only 11 pounds she still has a distance to go. She is on a 24 hour feeding tube drip to help her gain as much weight as quickly as possible. Emmie also contracted a virus which needs to completely leave her system before surgery can be considered. Her condition is made worse by an enlarged heart and a weak trachea making it difficult for her to breathe.
In addition to the medication for her heart failure which she needs every few hours, she also needs medication for acid reflux and blood pressure.
The purpose of this GoFundMe is to offer the family financial assistance with their medical costs as well as day to day bills so that they can focus on helping Emmie to get better. Any additional funds will be donated to Phoenix Childrens Hospital which has been a God send to this family.
~ Severe ASD (atrial septal defect), Severe VSD ( ventricular septal defect)
~ Chronic CHF(Congestive Heart Failure)
~ Cardiomegaly, Stridor
~ FTT (failure to thrive)
~ She is on 5 different medications for her BP pressure and chronic heart failure that we administer daily
~ She has an NG tube for continuous feeds, and will be hooked up to oxygen daily because of her Destating to the 50s/60s during the night.
We are trying to get her stronger and over the Coronavirus she was diagnosed with so doctors can preform her open heart surgery. They have decided it is better to do the surgery sooner rather than later since she isn't thriving and her heart failure is worse. During surgery she will also have another major procedure for her Tracheomalacia (smaller airway) and they will be widening it.
Surgery for Congenital Heart Defect children is not a cure, so she will live with this condition the rest of her life. Most likely she will be on medications and EKG and ECHOS will be a routine follow up for her forever. Surgery will lessen the severity but she will always be a part of the CHD community and she will eventually have the scar of a Heart Warrior.
From Mandi, the mom:
She hasn’t been with us long but she’s brought so much hope to our world. Some people wait a lifetime to meet their heroes and never do, I gave birth to mine. She has the heart of a warrior, from day one in the delivery room she fought to be heard. Her little cry was faint, but she made sure we all knew when she didn't approve. She is a little fighter. I've been with her everyday since that day and she has had a few good days but a lot of bad ones, and the bad ones never seem to keep her from smiling for too long. She is a happy baby despite all she has gone through in her short life, the nurses and medical staff adore her and can't believe how cute she is. She has eyes that stare into your soul, likes she's an old soul and has been here before. She is my mentor because she has taught me that despite what you are going through and how tough your road is you can still smile. Still find joy in the simple things and bring happiness to those you love, even in your darkest hour.
- Roger Carr
- Amy Dutton
- Janet Peterson
- Aaron Carr
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