Another "heart mom" is having an event where she shares other "heart family" stories, ours may be a little different in the beginning than most... but still, it is "our" story... the SHORT VERSION!
We met Jilliann (Jilly), at 5wks. old. She was in our local hospital and in need of many things... one being a loving family who could deal with her medical issues AND give her all the love that she deserved. Within a week, our family agreed that WE, were that family...
Jilly was born January 5th, 2007 with HLHS, a CLEFT PALATE, SEVERE HYPOTONIA (low muscle tone) due to neuromuscular issues, and very bad digestive issues. She was diagnosed in utero, as having the heart defect so she was born in Philadelphia. At 3 days old, Jilly had her 1st open heart surgery, she did not do well with the healing process and pain control, she also required alot of pacing to keep her heart in rythem but eventually she overcame these things. She had her 1st abdominal surgery at 3wks. old to place a g-tube for feeding and she had the nissan fundoplication (to wrap her stomach around her esophagus to prevent reflux). Jilly went home from Philadelphia at 4wks. old, but was admitted to our local hospital a few days later with severe weight loss. She was severly dehydrated, and it was determined that she most likely had not received any nutrition during this period. She was then, abandoned in our local hospital (in child protective's terms). It was then, that "our" story begins...
We met Jilly on Feb. 15th 2007... on Feb. 19th she was placed into our custody and our "LOVE" story begins. Also, our journey into the "HEART WORLD" began... one that noone can be prepared for, until they experience it. Within a week, we were headed to Philadelphia to adress the "cyanotic episodes" Jilly was having. Noone was sure, what was the cause but we knew that Jilly would desat. and brady during these episodes. In the next year, we spent a large part of Jilly's life, and ours... at CHOP. We learned that she was having reflux and retching episodes, sometimes up to 30 time/day.
Jilly had her second open heart surgery at 6mo. old. This too, was a rough time for Jilly. We learned that it is not unusual for children with neuromuscular issues to heal slower, or to not deal with pain as well. She was put on Phenobarb to calm her brain, and then things improved. It was a month stay at CHOP.
At 14mo. old, Jilly was again admitted for GI issues. She was also scheduled for her Cleft Palate surgery... the doctors went ahead with the surgery on Feb. 19th, she then caught the adnovirus which caused her to lose alot of wgt. She put put on TPN for nutruition... this required a Broviac (central line) to be placed in her leg. The next day, the line came apart and it is believed that air entered her blood stream and went to her brain... On March 1st 2008, Jilly suffered a stroke to the Right Frontal Lobe of her brain. She lost all use of her Left side. Jilly spent the next yr. regaining the use of her Left side. And on Jan. 5th, 2010 Jilly started walking at the age of 3yrs old.
On April 18th, 2010... we headed to CHOP again for yet another open heart surgery, the 3rd of her 3 planned surgeries. Once Jilly was open up by the surgeon, it was realized that the bulging Aorta that we knew she had... was much worse than anticipated! The only choice was, to replace Jilly's Aorta and postpone the Fontan completion until next year. After the surgery, Jilly developed severe GI issues yet again, and underwent several surgeries to help her... over a 10wks. period.
Today, Jilly is home... she continues to be on oxygen since her last openheart surgery. It was hoped that Jilly could wait a yr. to have her next surgery. But, it has been decided by Jilly's cardiologist and surgeon that she needs the surgery sooner. We are waiting for the dates, but the surgery is expected to take place in Oct. of this yr., just 6mo. after her last one.
We hope that this will be her 4th and final surgery, as 4 open heart surgeries before the age of 4yrs. old... seems like enough!!! Jilly continues to suffer from severe GI issues, and is fed into a J-tube going directly into her intestines.
Jilly is a fighter, a warrior, and a stroke survivor. We love her, and will continue this journey whererever it takes us. No matter what, she is our perfect little daughter!!! Thanks for reading our "story"...
See others stories at: http://www.whenlifehandsyouabrokenheart.blogspot.com/
