After Chris had been out of the NICU for a year, Mike and I were invited to serve on Legacy Emanuel's NICU Family Advisory Board. A few years later in 2000, we helped found a nonprofit organization, Precious Beginnings: Parents Supporting Parents of Critically Ill Newborns. During those early days, we were part of conversations about the ideal NICU. As the hospital visionaries and staff discussed the concept of private NICU rooms, some on the staff balked. The nurses were concerned about how they would be able to have ready access to the babies. They had a hard time thinking about how they would do their work differently, in spite of studies showing that babies benefit from the quiet and families benefit from the privacy. But now it's becoming a reality--family-centered care has won out. When I saw this video, it made me tear up a little.
Back then we were talking about how to implement family-centered care in the NICU, and now they are integrating family-centered care into the hospital building. I think back on those 117 days in the hospital with Chris, and how different it would have been if we had been able to stay in the room with him, fix our meals down the hall, and nurse or breast pump in privacy. I think about the time when he had to be hospitalized for RSV when he was 1 year old, and we very uncomfortably stayed overnight for a week in his PEDS room. We were only able to stay in his room because he was in isolation and the other crib was not occupied. Otherwise we would have been out of luck. The current hospital has very few facilities for parents to fix meals or stay comfortably.
I think of our dear friends who lost their child Zacary in the Emanuel ER because of the lack of pediatric specialists on staff that horrible Thanksgiving evening. For all of us, it's too late to make our hospital experience better...but it's not too late for the generations of sick children to come. (Another memory I have is hearing how Laurie, Zacary's mom, refused to leave the hospital after Zac was born. The NICU staff were forced to find her a room. I never would have had the guts to do what she did. She set a trend!)
Mike just told me that the nurse-manager of the NICU during our days on the Family Advisory Board is rolling out the launch of the new children's hospital. I can see her vision and fingerprints on the communication. I'm looking forward to seeing the hospital when it's open, and I'm sure there will be more tears!