Emma’s Story

Emma’s Story is told by her loving sister:

“In 2003 my family was blessed with a beautiful baby girl weighing in at a healthy 7lb 9oz and 20in long. We were all so excited and also unknowing of the future ahead. Emma Grace Hemslein Hess was born on September 17, 2003. She was the most precious blonde haired, blue eyed baby we had ever laid eyes on. We could not wait to get her home and do what every mother and sister dream of… dressing her up! My dad and brother were so proud to have a new daughter and sister! Two days later she was sent to WVU Children’s Hospital in Morgantown, WV where she was diagnosed with Hypoplastic Left Heart Syndrome or HLHS for short. Our beautiful baby girl had been born with a Congenital Heart Defect. About 7 days later she had her first of 3 major open heart surgeries, the Norwood. She came home for the first time ever on November 10, 2003.
March 16, 2004 Em went back to WVU Children’s Hospital where she had her second open heart surgery, the Bi-Directional Glenn Procedure. In May 2004 she was flown to Nationwide Children’s Hospital in Columbus, OH for a stint to be placed in her pulmonary artery. After a week she was flown back to Morgantown for G-Tube placement surgery then came home July 1, 2004.
Three years after being home she went back to Morgantown on July 19, 2007. She underwent three open heart surgeries. The first was the third of her major heart surgeries, the Fontan Procedure. She then had her first fenestration that same month and her second in July. She came home August 8, 2007 and was hospital free for 7 years!
These past 7 years are when Emma truly captured the hearts of everyone who encountered her! She became well enough to attend public school for the first time, which she loved so much!! Just seeing her will bring you joy! Over the years Emma has taught my whole family and everyone who meets her so very much! Emma loves unconditionally and lives everyday with love and light. Even on bad days she never fails to smile through her pain and discomfort. Emma is an angel sent to us to teach us all what it really means to live every single day to its fullest. To love like you never thought you could love before and to fight to be the best you can be. To truly know what it means to live, love and laugh. I know I would not be the daughter, wife and mother I have become without Emma and she continues to teach me to be better everyday.
Christmas Eve 2014 was the first time Emma passed out and quit breathing. That was the first of many more to come. We spent the next month worrying and trying to figure out what was causing this and how to help her. January 15, 2015 Emma was admitted once again to WVU Children’s Hospital for respiratory distress. That is when she was diagnosed with PLE- Protein Losing Enteropathy, a condition of the gastrointestinal tract which results in a loss of protein from the body. About 13.4% of patients who had the Fontan Procedure develop PLE. Our Emma is one of them. As a result of this Em had a pacemaker put in, octreotide treatment (which failed), my mom gives her a daily Heparin Subcu shot in her belly and she has a feeding tube with Portagen and Beneprotein added (this is a continuous feed). She also had a Tenk Drain Tube placed in her belly to pull fluid off her stomach and is on 14 different medications given up to three times daily, and has home healthcare.
Emma came home on March 9, 2015. That was when the doctors gave us the dreaded news of her survival rate to be hopefully through summer 2015. We hope and pray that God grants us yet another miracle for Emma but we are so blessed to have had her at home for those 7 hospital free years! Since being home she has good and bad days but continues to show her beautiful smile. She is a fighter for sure!
I am so thankful not only for Emma but for my parents who always put 100% into being amazing parents and caregivers not only to Emma but to my brother, myself and their grandchildren! God not only gave us an angel in Emma but parents who unselfishly devoted their lives to their family!”

A special thank you to Lori Pickens Photography for these priceless images. Hess Family, you are in our prayers.
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