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

Feeding Difficulties & Your Preemie

by Anne Boon, MS, CCC-SLP After being intubated with a breathing tube for so many months Bryce’s ‘suck muscles’ were weak and trying to feed from the bottle took so much energy that he would tire out before filling his belly. We supplemented tube feedings by way of an NG tube for weeks while trying […]

When Coming Home from the NICU Isn’t What You Expected

In the NICU Faye seemed like she did so well. She sailed through her two-month stay with no issues and the doctors we all so impressed with her. They called her the superstar of the ward. This was my second time around at being a mama, so once there was talk of her coming home […]

Invisible Disabilities: Advocating for the Unseen

Parents of preemies often remark on how one can never quite seem to leave the NICU behind. Sometimes they are referring to the emotional effects of a traumatic birth and NICU stay. Sometimes they are referring to the aftermath of prematurity itself: developmental delays, physical delays, and other “invisible disabilities.” When a baby is born prematurely, […]

Sleep Awareness Week & Preemie Sleep Challenges

The National Sleep Foundation is celebrating its annual Sleep Awareness Week March 6th through March 13th, to raise awareness for the health benefits of sleep and its importance to safety and productivity. If there’s one thing new parents (and parents of preemies) have in common it is lack of sleep. A 2014 study showed that new moms were still sleep deprived after eighteen weeks of giving birth. There are hoards of articles with sleep tips for parents and recommendations for how many hours of sleep babies and toddlers need, but what if they don’t help? [Read more]

Keeping My Respiratory-Compromised Child Healthy During RSV Season – One Mom’s Story

I was excited and scared when we finally got to bring our youngest daughter, Mighty Z, home from the hospital. It had been six long months since she had been born with Congenital Central Hypoventilation Syndrome (CCHS), and during that time she had been trached and vented. Before the hospital would allow us to bring Mighty Z home, they prepared us to care for her and taught us how to troubleshoot problems that might arise. Her doctors and nurses made sure we understood how important it was to keep Mighty Z, a baby who had been intubated and was still trached and vented, away from every contagious “bug” that tried to bite her. RSV, the flu or even the common cold, could result in not just sickness for Mighty Z, but in her death. [Read more]