Adjusting to a new normal
You likely will feel a range of emotions during your time in the NICU. Families find different ways to cope during the many months their baby is hospitalized.
You can listen to two different family experiences below.
Sofia: The first night home with all of the medical equipment was terrifying. I never really realized how dependent I was on the hospital staff. We worried something would happen and we wouldn’t know how to handle it. It doesn’t get easier, but it gets to be more of a routine.
Having home nurses is hit or miss—sometimes they don’t show up and there are definitely some nurses we trust more than others. But Santiago needs somebody to be awake with him 24/7, so without a nurse, one of us has to stay awake at night.
The doctors say there is a chance Santiago will come off the ventilator one day. We hope he will be one of the lucky ones. He’s been back in the hospital twice, after he caught a cold. At first, it was weird being anywhere but the NICU, but we have started getting used to a new area of the hospital.
Dara: I don’t regret the choice we made. There is a difference between being kept alive and living. And we wanted more than just "alive" for Steven.
Sometimes I wish I was more selfish, that I had more time with him. But I get to rest now knowing we were selfless, and we did the right thing for him. That doesn’t mean we don’t miss him terribly.
I also wonder if Steven suffered too much, if we didn’t let him go soon enough. There’s no good decision in that situation. Every decision will hurt, and you are going to question if you did the right thing. But there is no right and wrong, what is right for your family is the right decision. I didn’t know any of this at the time, but after some reflection, I have been able to see this.