Words of Advice from Heart Families

Advice from Elsbeth: Your Baby Has Been Diagnosed with Heart Defects, Now What?

Advice from Patty: Starting Your CHD Journey

Terms to Start Learning:

Cyanosis: Blueness of skin caused by insufficient oxygen in the blood. Blueness of the skin occurs when critical amounts of reduced hemoglobin are present.

Pulse Ox (Pulse Oximeter): Measures the oxygen levels in the blood.

NPO: Nothing by mouth

Extubate: To remove a tube from the airway.

Advice from Mandi:

Be There for Your Child & Take Care of Yourself

Advice from Nicole:

Get to a High-Volume Medical Center

Advice from Casey: Be Your Child’s Advocate

Advice From Sean and Lani: Participate, Expect the Unexpected, and Practice Self-Care

Advice From Nina: A Five-Year-Old Heart Warrior’s Perspective

Nina is a spunky five-year-old who has already been through more in her lifetime than most will ever experience. She’s full of sass and her wise advice is on point. Listen to Nina’s advice for kids and parents on their heart journey. She gives me so much hope!

Here’s a little background on Nina, from her Mom, Lani:

Diagnosis (given at 20 weeks gestation):

Single Ventricle – Hypoplastic Right Heart Syndrome (HRHS)

Pulmonary Atresia, Tricuspid Atresia, MAPCAs

Surgeries:

–Norwood / BT shunt at 8 days

–Unifocalization Unifocalization for MAPCAs and shunt upsize at 6 months

–Glenn shunt at 21 months

–Fontan at 4.5 years

History:

Nina had her first surgery at Dell Children’s in Austin, TX and hit a number of complications: she suffered hemi-diaphragm paralysis and was ventilator-dependent for 2 months; she suffered bilateral vocal cord paralysis and was trach-dependent for 15 months; she could only digest small volumes of breast milk via an NG tube because of poor blood perfusion to her gut thanks to her MAPCAs (major aortopulmonary collateral arteries), and she had multiple cases of “medical NEC” along the way. Nina’s first year or so of life was a real doozy, and she didn’t come home from the hospital until she was 8.5 months old — something we definitely hadn’t planned for. Her last 3 heart surgeries have been out at Stanford Children’s in Palo Alto, CA and she has exceeded all expectations. She loves monkey bars, dinosaurs, acting, karaoke, and sushi. We never dreamed she’d be doing this well, and we’re so thankful that we found the perfect surgical center for her complex cardiac care.

Advice from Megan: The Importance of Staying Organized

Megan is the mom to an amazing 7-month-old heart warrior, Blake.

Advice from Elsbeth: Celebrate Your Pregnancy

Elsbeth is the mom to heart warrior, Eloise.

Advice from Sharred: Support Your Spouse or Partner

Sharred offers advice from a dad’s perspective. He is the father to Eloise, a 17-month-old heart warrior.