Auriana Faith was born on September 17, 2008 after I spent several weeks in the hospital on monitors due to umbilical cord absent flow and pre-eclampsia. An ultrasound around 18 weeks revealed that Auriana had a severe heart defect known as AV Canal Defect and possibly a chromosome abnormality. When she was born 5 weeks early, Auri weighed just 3 lbs. 10 oz. We found that she had Down Syndrome and a heart defect. She got her first echo-cardiogram at just 1 day old! We were told that Auriana had Complete AV Canal Defect-- No walls in her heart at all!! All her blood mixed up together. She was too weak to eat and had to be NG Tube fed. She had her first open heart surgery around 4 months old. In this surgery, the surgeon went into her heart to build the walls out of gortex patches. She did well and was in the hospital about 10 days. She never learned to eat properly though and was tube fed until she was 29 months old. We were told that Auriana may need another open heart surgery at 10-15 years old to replace the gortex. She was followed by a cardiologist every 6 months. In July of 2011, however, we noticed her tiring more easily and turning purple often. I called and made her a cardiologist appointment. When her cardiologist did an echo he noticed that she had narrowing in her aorta or aortic stenosis. She has another open heart surgery-- subaortic membrane resectioning--in September of 2011, just before her 3rd birthday! They left some of the membrane intact thinking that it was better to leave some since the conduction system of the heart is located in this area. The surgeon explained that he didn't want to risk her needing a pacemaker placed and wanted to give her more time to grow. He said she would probably need another surgery in 3-5 years to open up the aorta some more. Just a few weeks ago Auriana begin having chest pains and after a cadiac cath was done, we were told that the narrowing in Auriana's aorta was measuring around 80 percent (which was higher than it was prior to her previous surgery just 15 months ago!) She also had developed narrowing all the way up into her left ventricular outflow tract (LVOTO- Left Ventricular outflow tract obstruction). She needed surgery, once again, within the month! We went into this surgery on January 25, 2013 with an extremely high probability of her needing a pacemaker and with an expectation for a 6-8 hour surgery. Just 4 hours after surgery began, it was completed and Auriana amazingly had her own heart rhythm!! We will be heading home tomorrow, January 28, just 3 days after surgery!! We are hoping not to need anymore surgeries until the gortex replacement around 10 to 15 years old. Auriana has been a little trooper though! She is so strong and has taught me to be thankful for the little things in life! Auriana has a 7 year old sister, Kylee, and a 1 year old sister, Lily Hope who have been a huge support to her during her surgery! She wants to get better to go home and see her sisters! We thank God daily for being with Auriana and allowing us the blessing of raising her, Kylee, and Lily!! My life would not be the same without my 3 little girls in it!
ps. please forgive me if this story is not well written, this momma has been in and out of the hospital with Auri over the past 3 weeks. 1 ER visit and 4 day stay for chest pains, another hospital stay for vomiting, and finally her surgery. Mommy is tired but so happy to see Auri's heartrate within normal range for a change. (she used to have heartrates in the 40's while sleeping, last night she was reading in the 80's while sleeping. It is such a great feeling to know your child's heart has been repaired and is functioning well. It makes all this worth it!
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