Hand to Hold's Official Blog: Written by Parents for Parents

The Sky is the Limit: Breastfeeding a Vent-Dependent NICU baby

While on three-day hospital bed rest with PPROM, I researched what was required to create a breast milk supply under these circumstances: our son was going to be an extremely low birth weight, premature, and sick baby. He would be separated from me at birth, untouchable for days, possibly weeks. I read that pumping within […]

Teams and Machines: 10 Tips for Baby’s Homecoming

Luca was born at 26 weeks, 5 days. We were permitted to see our newborn briefly after his birth, once all life-sustaining equipment had been placed. Our baby was thirteen weeks premature and out of my womb. We weren’t even thinking about his homecoming. His skin, taunt and red, stretched over his body as though […]

{Friday Feature} Raising a Medically-Complex Child

There are more than 6,000 rare diseases in the world, and approximately 1 in 2,000 people have been diagnosed with one. Every person and/or family affected by rare disease is different in their own way, but we all share the same problem: we are “rare” and often even the medical community doesn’t know what to make of our diagnosis. My 11-year old, Mighty Z, is affected with a rare disease that affects only 800 children worldwide. Her disease does not discriminate on the basis of race, or gender, and it is known by two different names: Ondine’s Curse (its first and oldest name) and Congenital Central Hypoventilation Syndrome or“CCHS” (its modern name). CCHS is a central nervous system disorder in which the autonomic (involuntary) control of breathing is low. For Mighty Z and other CCHS patients, this means that the respiratory response to oxygen and carbon dioxide is sluggish at best during the day; and, it is absent at night, when sick and/or when stressed. [Read more]