Wednesday, December 3, 2008

Reflections on Precious Beginnings and Precious People

I'm behind in my blog posts...but in November, we attended a reunion for the neonatal intensive care unit (NICU) Christopher stayed in for the first four months of his life. They used to do NICU reunions fairly frequently, but they haven't had one for several years.

Mike sat at a table for "Precious Beginnings: Parents Supporting Parents of Critically Ill Newborns," the nonprofit support group we helped found. I was heavily involved in the organization for several years, and then I got burnt out and Mike stepped in. With the enactment of HIPAA (Health Insurance and Portability Act), it has been much more difficult for the organization to recruit volunteers, and they are down to bare bones relying on a handful of volunteers to run things and support parents. Fortunately, they were able to get 15 new potential volunteers signed up at the reunion!

While Mike chatted up returning parents, I followed the kids around from popcorn cart to face painting station and cupcakes and chatted with staff. Many of the beloved nurses who took care of Chris have moved on, and there is a lot of new (younger) blood there now. It has been 12 years, after all, since we left the NICU...

Terrified and excited, with our little 5-pound baby, who was hooked up to an oxygen tank, apnea monitor, and a laptop computer...we left the NICU after 117 days, right before Christmas in 1996. I will never forget the very emotional moment when we finally walked into the front door with our 4-month-old baby...and we were able to hold him and cuddle him as much as we wanted (without needing to ask permission!), a luxury that most new parents take for granted.

It's always fun to see the staff and have them marvel at how big (and old) Chris is...and we were able to brag that he had received his first middle-school report card, with all As and Bs! Not a small feat, given his very rocky start in life!

Chris with Medical Director Dr. Lewallen, who was the first doctor to take care of him...he was the one who came to my hospital room the day after Chris was born to tell me that he had a 50% chance of dying, and a 50% chance of major disabilities. Needless to say, he was NOT my favorite person at first! Then several weeks later, when Chris had cerebral edema and low flow to the brain, he was the one who met with us to tell us that Chris' prognosis was extremely grim, and he had suffered severe brain damage...and would most likely die or have to have life support withdrawn. (Chris obviously proved that prediction wrong!) I really came to appreciate Dr. Lewallen's compassion later...and the fact that he invited Chris' primary nurse in to the meeting with us...and how gently he gave us the horrific news. And then finally, we worked closely with Dr. Lewallen on the Family Advisory Board later on, when we advised the NICU management staff on how to be more family centered in their policies and care. Given Dr. Lewallen's extensive history with Chris and knowledge of his early hurdles, I'm always happy to have him see how well he has grown up!

Chris with Deb Ross, who we've worked together closely with via Precious Beginnings (she is the unit representative on the board).

With Nancy Dolphin, the NICU research coordinator. She was one of the first people to talk to Mike when I was still in the recovery room after the c-section. She sidled up to a very shell-shocked Mike and asked whether we wanted Chris to be on a research study. She also followed Chris closely when he developed retinopathy of prematurity and had to have regular eye exams.

With Jamie Rupp, the NICU nurse manager for several years, who will be leaving the NICU this week to start up the hospital's new children's ER. We worked very closely with Jamie on the Family Advisory Board and the startup of Precious Beginnings. Her husband is a respiratory therapist on the unit, and they have two wonderful sons, one of whom is an Olympian runner (and who I've just discovered has a Wikipedia entry!!).

I just noticed that Chris has food in his hand in nearly all of the photos! That's another thing I never thought I'd see. We call him the "bottomless pit," which is pretty amazing given all the feeding issues we had with him as a baby. He didn't even reach the BOTTOM of the growth charts until he was 3 or so...and he continues to be extremely skinny in spite of his eating habits. Lucky him!

1 comment:

  1. Marie,

    This post brought tears to my are such a wonderful mom. You give this new preemie mom something to strive for...patience, humor, and compassion in tough times. Thanks for sharing this post. I loved meeting Chris at the NICU event...and I also noticed that he ate about 20 cupcakes that evening ;) GO CHRIS!