Feb. 8- CHD Awareness- Auriana's Story

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!

Feb. 4- CHD Awareness Story- Katie's Story

Katie was born on March 28, 2006 at Children's Healthcare of Atlanta at Egleston. We knew ahead of time that she would be born with Hypoplastic Left Heart Syndrome (HLHS). They were able to see at my 19 week ultrasound that she was missing one of the chambers of her heart. We traveled 3 1/2 hours from our home in Tennessee to Children's Healthcare of Atlanta for all 3 of her open heart surgeries and any other care that she may need that deals with her heart. Katie did wel,l for the most part, after her 1st two surgeries with little complications, but the Fontan was definitely a challenge. After the Fontan, we couldn't seem to get rid of pleural effusions around her lungs and even came home with pigtail catheters on each side that we had to drain every day at home. She was on the verge of being placed on the transplant list in Jan. 2010 when finally by the grace of God the fluid dried up. In her short life she has had 3 open heart surgeries, 8 heart caths, a g-tube placed due to a paralyzed vocal cord during her 1st surgery (it was removed on her 1st birthday), migraines, lots of medicine, and numerous hospital stays mostly due to the pleural effusions, She is doing well now. She is in 1st grade. She enjoyed playing softball and is now taking a dance class. She loves doing most things that a 6 year old little girl would do.

Feb. 2- CHD Awareness- Owen's Story

Owen's journey began when he was just 47 hours old, when he underwent surgery to correct a Congential Heart Defect called Tranposition of the Great Arteries. His condition was life-threatening and required immediate open-heart-surgery to reverse the pulmonary and aorta arteries. He spent 8 days at CHOA-Egleston, where he continued to improve day after day. He pulled through like a champ and the surgeons considered his surgery a success. He will be required to see a cardiologist annually, but his long-term prognosis is good. Owen is now a 3 year old that loves to run, play, and eat lots and lots of chocolate. Owen brings his family much joy and reminds them of their blessings all of the time.

Kickin' off CHD Awareness Month-My Hero-Olivia's story

What is a Hero? A hero can be many different things depending on who you ask. To some their parents may be their heros, to others it may be superman or a football star. Often times you see children pretend to be hero’s on the playground. But to me, my hero is my ten year old daughter, Olivia. And she doesn’t pretend to be a hero, she is one. She was born on December 19, 2002. This would be the day that we would learn that she was born with several rare Congenital Heart Defects. The day she was born was the day that she began to fight for her life. She has gone through more in her ten years than most do in a lifetime. She was born with Coarctation of the aorta, pulmonary stenosis, mitral valve stenosis, and an enlarged heart. She endured open heart surgery at 6 months of age to repair two of her defects where she remained in the hospital for 3 weeks and has had her second open heart surgery this past May to replace her pulmonary valve and remove a muscle bundle in the left ventricle-something the doctors have never seen before. Every day she takes numerous amounts of meds and has some limitations on what she can and cannot do. But she always smiles and tries her best not to cry and be brave when she gets a poke or test. She shows so much strength and bravery everyday of her life. She is the toughest little girl I know. In addition to her heart defects she also is going through testing for an enlarged liver and spleen and a possible bleeding disorder. You would never know by meeting her that she goes through all of this every day. She shows her courage, hope and strength through her laughter, tears and all of her energy despite her illness, for that she is my biggest Hero, my warrior. Each child is born and most believe with a predetermined path created by God. Not one journey is the same and I believe when you add the element of a congenital heart defect to a child– you have a Heart Hero. I am reminded that when I get down and feel like giving up of what she goes through and I know that I can get through it. No matter what comes her way she endures it and moves on to the next and never complains, always smiling, a true hero. My heart hero.