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Hi...I'm Averi...My twin sister Adison and I were born on May 25th, 2007. I was born with Tetralogy of Fallot and Pulmonary Atresia. My first open heart surgery was on May 30, 2007 and September 4th, 2007 was my complete repair. I now have a cadaver vessel (homograft) as my pulmonary artery and my VSD and ASD (hole) is now closed. Please continue to pray for me and our family. Love you all.
My mommy recieved my diagnosis on January 23, 2007 (at 15 weeks gestation) with confirmation on March 1st. She was told I would require several heart surgeries to repair the defects. I have Tetralogy of Fallot with pulmonary atresia.
My first surgery required me to go onto bypass, which was not anticipated before surgery. It was supposed to be a 3 hour procedure that took a little over 8 hours. My vessels were just too tiny, more so than we thought, so my body required a central shunt from my Aorta straight to my Pulmonary artery. I had a very difficult time during surgery and gave everone quite a scare. My first night was very difficult, my blood pressure was hard to stabilize and the doctors stayed in my room. The first few weeks after surgery brought many ups and downs and scary times.With lots of help from my nurses, docs, family and prayers I had begun to take steps towards recovery.
My second surgery was going to be about 9 months later, but after my diagnostic Cardiac cath on August 27, the doctors decided I could not wait that long and scheduled my surgery for one week later September 4, 2007.
September 4th surgery was 5 1/2 hours and went very smooth. I did very well going on and off heart/lung bypass and my full repair was achieved. I now have normal oxygen levels (YEA!) However, I sufferred a heart attack sometime after surgery and am having difficulty with my ejection fraction (the pumping of the heart) I am on medication to help with this. Please keep us in your prayers as I continue to improve. For more on my story, visit this site.
Hi...I'm Jackson...
Jackson Aronin was born on May 15th 2007 at 9:45 AM at Barnes Jewish Hospital in STL. Jack was born with long QT syndrome and Left Ventricle cardiomyopathy with non-compaction. His defect was diagnosed as Heart block when Katie was 16 weeks pregnant. Jack received a pacemaker a day after his birth until he was rediagnosed and it sustained his life until a heart was donated.
Jackson George Aronin is a miracle in the Making. Katie and Rob were only 16 weeks into their pregnancy when thier doctor at Scott AFB noticed a problem. He made phone calls and had us seen at ST Louis Childrens hospital at the Heart Station. We did not know what we were in for and were we scared. Jackon was diagnosed in utero with 2:1 Heart block while still inside and we thought that all he would need was a pace maker to get him on the right track. And that is where the story really begins.
Jack didnt want to wait any longer. At 35 weeks, Katie had enough of the appointments and the worry, and we delivered Jack. There was an OR full of people and they swiftly wisked our boy away to the NICU at Childrens. after 4 hours, the cardiologists noticed how unstable he was and moved him to the CICU. This is where we learned that Jack had Long QT syndrome. We also learned that Jacks heart was so bad because of this that he would need a transplant.
We had a rocky couple of weeks waiting for his heart. We had bouts with intestinal infections, and seizures, but his heart came, and his intestines were fixed. We are proud to say that we have been seizure free since 12/14/07.
Our Action Jack is the living proof that miracles do happen. He also shows us that Congenital Heart defects are not age specific. They affect everyone from babies in their mommy's belly to our grand parents.
For more on my story, visit this site.Hi...I'm Brody...
Brody was born on April 25, 2007 at Western Missouri Medical Center in Warrensburg. He was born prematurely at 34 weeks gestation. He just couldn't wait his turn! He was released from the hospital 2 days after delivery. When he was a week old was shipped to Children's Mercy Hospital for dehydration, bradycardia and apnea. We spent 3.5 weeks in the Neonatal Intesive Care Unit. He was diagnosed with left ventricular hypertrophy, which means his left side of the heart wall thickens. We got to stay at home for 1 month before we came back to Chilren's Mercy Hospital again. This last hospitalization is when we realized Brody had severe hypertrophic cardiomyopathy. His heart was at least triple the size of a normal infant heart. We were told the only way he would live is by a heart transplant.
He was transferred to St. Louis Children's Hospital for further evaluation of his heart condition. His heart had deteriorated quickly and his entire heart was thickened and enlarged. He had trouble breathing due to his compressed lungs from his heart. He also had a pericardial effusion (fluid around the heart) that kept reaccumulating. As his heart gets thicker, it becomes harder for the left ventricle to push out blood to the rest of the heart. He was listed as a critical status on the heart transplant list. We are trying to find out if this heart condition is a genetic disorder. So far all of his genetic testing has come back normal.
Brody received his new heart on August 1, 2007 at 3 months of age. After one week of recovery, he was discharged. We have since followed up at Children's Mercy Hospital. He has had one mild episode of rejection possibly due to low therapuetic drug levels of his immunosuppressant. For more on my story visit this site
Hi...I'm Jacob...
Jacob "Jake" Randal Lawson born Mon Aug 27 9:58 AM after a helicopter ride (before he was born) from StJohn's Springfield to Barnes-Jewish St Louis. Jake was born by c-section and kissed by mom and dad before going to the Neonatal Intensive Care Unit. Although early at 36 weeks 5 days, he was 6 pounds and 17 3/4 inches long. He was first held by mom at four days old.
Jake was born w/ Hypoplastic Left Heart Syndrome (HLHS). Because he was a little early, his lungs were also a little immature. Jake remained in NICU until Friday August 31 when he was moved to the Cardiac Intensive Care Unit (CICU). Jake had a Norwood operation on September 4th. The operation was complicated and required the aorta to be reconstructed twice to achieve the optimum outcome. This long stint in surgery was tough on Jake's body.
Though he came out of surgery with only a ventilator, he had to be put on ECMO about 10 hours after surgery. ECMO is a heart/lung machine that works to pump and oxygenate blood while keeping his own heart and lungs working also. Jake then went into kidney failure and the ECMO machine's ultrafiltrate was used to do the kidneys work.
Jake's situation was pretty grim at that time. Jake stayed on ECMO for 8 days. It took another 8 days for Jake's kidneys to slowly regain their function and clear enough of the fluid/edema so Jake's sternum could be brought together and closed.
Jake had the second operation in January 2008 of the three-stage surgical repair for Hypoplastic Left Heart Syndrome. After the Glenn, Jake had multiple effusions as a complication of the surgery. He went into heart failure and was listed status 1A for a heart transplant.
On Aug 16, 2008, Jake got a new heart. For my on my story visit this site.
