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]
Babies come with a lot of gear. NICU babies sometimes come with even more. When my baby was discharged from the NICU not only did I bring him home, but also a bunch of medical equipment, medications, and breast pump parts. When we arrived from the hospital there was a big box of medical supplies waiting […]
As a supportive network of NICU parents, we do our best not to compare experiences, but to recognize that everyone’s experience is different, and everyone’s feelings about that experience are completely valid. It seems no matter how long the NICU stay, many of us carry some degree of guilt about not being able to protect our babies.
Each experience is unique to that parent. [Read more]
Cues are the signals your baby uses to show what they are feeling and how they are coping with the world around them. Babies can show this both through their behavior and through changes in their physiological state. [Read more]