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

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]

12 Tips for Getting Synagis Injections Approved

Getting Synagis injections approved by insurance companies can be cumbersome, but for me the threat of my babies catching RSV was always worse. So, I stumbled my way through several Synagis approval scenarios. Hopefully, these tips can make your Synagis quest a little easier. But first, it’s important to understand that there are general guidelines that […]

My RSV Story. My Voice.

This is still the hardest part of the story to tell. The story of my girl born way-too-soon, weighing way-too-little. Because this is the point in the story where we let our guard down. Where we actually let ourselves believe that our girl’s prematurity was behind her; that we were in the clear.

The Battle for Synagis

The following post was submitted by Stacey, a reader of Preemie Babies 101: “Where to start?  I wanted to share our struggle with getting the RSV shot for the second season so as to help others feel they are not alone in this battle.  We came home from the NICU on November 7th, with our […]