Our world changed forever March 26, 2015 when we first heard the words “Hypoplastic Left Heart Syndrome.” During our 20-week anatomy scan we learned we were having a girl and that she would be born with a congenital heart defect. This is when Help-A-Heart entered our lives and helped in more ways than they’ll ever know! The knowledge these families have and the genuine support they provide are truly a gift to new, and existing, heart families.
August 4, 2015 Aja was born. At 6 days old she had her first open-heart surgery. Her surgery last around 6hrs, but the next several hours were the most heart wrenching. As a heart parent you learn that there will be ups and downs during recovery and we were quickly faced with a ‘down.’ As she struggled to become stable, we watched doctors and nurses work tirelessly to help her. Ecmo (life support) was discussed and things seemed overwhelming. We watched the surgeon make a small incision in Aja’s stomach and place a stomach drain to relieve fluid buildup. Praise God this is exactly what her little body needed and she improved. Eleven days after surgery she began breathing abnormally and her renal stats quickly dropped. She had to have an emergency intubation and numerous doses of Epinephrine to raise her saturation levels. Our heart kids are fragile and one thing that is ingrained in my mind forever is a cardiologist in rounds saying that they may have just “aborted a premature death.” Thank God Aja did fully recover from this and was released when she was 4 ½ weeks old.
After going home we spent the next three months doing round the clock NG tube feedings, daily weight and oxygen saturation checks and loving on our baby. At 4 months old she went in for her second open-heart surgery. This surgery was successful; however she did experience difficulties again after obtaining a cold. Something as minor as a cold can cause so much distress on heart kiddos and it certainly took a toll on Aja. After 3 ½ weeks we took her home and started living a more “normal” life with her. Since this time Aja has had the opportunity to grow and thrive at home. She did have a minor surgery in September 2016 to have a Gtube placed, hernia repaired and gall bladder removed.
Aja is now 2yrs old. She is a happy, energetic and sassy 2yr old! She does continue to rely on her Gtube for nutrition, although she does practice eating and drinking throughout the day and continues in outpatient feeding therapy.
A few things we are confident about, God truly is a miracle worker, our family and friends are amazing and Help-A-Heart has been a blessing to our family! While we wouldn’t wish this life on anyone, we are grateful for the love and support we have through our Help-A-Heart family!