Harlan was born on August 7th, 2017 at Methodist Women’s Hospital in Omaha, NE.  In utero, Harlan was diagnosed with Hypoplastic Left Heart Syndrome (HLHS).  After delivery, Harlan was immediately transported to Children’s Hospital and further evaluation.  He was placed on prostaglandins to keep his ductus open and heart working.  Harlan’s official diagnoses is a single ventricle heart, double inlet left ventricle, L-TGA (Levo-transposition of great arteries with ventricular inversion), subaortic VSD, aortic arch hypoplasia, & ASD (atrial septal defect). Harlan’s heart defect combination makes him ONE in 200,000.  Definitely a unique miracle and thanks to the talented, caring & lifesaving cardiology team at children’s, Harlan has defeated many odds and is thriving at 15 months old.

 

Harlan had his first open heart surgery (Norwood) at 2 days old and a 2nd open heart surgery(Glenn & DKS) at 5 months old.  Both had a smooth recovery with minimal stay at children’s.  23 days total between the two!  Harlan had one heart catheterization before the Glenn and DKS in which we where back home that night.  After Harlan was born and his 1st surgery, he aspirated liquids by mouth, so was NG tube fed for 3 months until he healed and was stronger, but once off the NG tube was fully breastfeeding and still is today.  Harlan has thrived since getting off the NG tube and has had little to no troubles since.  His growth curve as a single ventricle has impressed doctors and he amazes us daily with his courage, bravery and strength for life.  Neurologically, Harlan is showing no signs of delay.  Looking at him, not knowing his journey, you wouldn’t suspect all he’s been though in just a years time. 

 

 

Harlan celebrated his first birthday and Heartiversary at the beginning of August.  We celebrated by delivering cupcakes to the cardiology department with his older brothers, Abel and Oliver.  In September, we attended the Heart Heroes Run and we enjoyed a day with so many other heroes.  It was a beautiful day and we love having a local organization filled with support and love.  This journey is stressful, but with support and care from family, friends and complete strangers, it makes every moment with Harlan a blessing and joy.  Harlan is our miracle from God & we couldn’t be more proud of him and the strength and faith he inspires us to have.  In the future, Harlan will require a third open heart surgery; he is monitored every 6 months.  The estimated time frame for his fontan surgery is 3-6yrs old.

 

As Harlan‘s mother and advocate, I’ve used my creative nature to develop a custom EKG binkie strap to spread hope and strength to new families faced with this journey.  Binkies are a must when you have a baby in the NICU/PICU and they are NG tube fed; however, you don’t want them falling on the floor all the time.  I’ve channeled much love and time into spreading CHD awareness.  I hope that with Harlan’s story, others see the inspiration, strength, faith and hope of our LionHearted Harlan. 

 

                                                                                                                           ♥ written by Erin