Today was a window into the emotions and lives of ten parents who currently have, or had children in a NICU. The majority were at Lucile Packard, but a few had their NICU experience in other parts of the country. Heather Keller, Lead Parent, Family-Centered Care Group at Lucile Packard, kicked off the class with some background on the work she and her group do to improve the quality and experience for patients and their families. She also shared with us her own Lucile Packard NICU story, which guided her towards the work she does now.
Here are a few of the questions we discussed:
•What was the first thing you noticed about the NICU environment when you entered? How did you feel when you entered?
•What would be important to include in the environment for you to feel comfortable spending time with your baby in the NICU? What should the parent space at the baby’s bedside consist of?
•What was the most difficult part of spending time in the NICU for you?
•What helped you the most in getting through your baby’s NICU stay?
•What would be important to include in the space to allow parents to hold their baby as much as possible?
Here are some quotes that I scribbled down:
“There is no intimacy with your baby (in the NICU).”
“On some days you want all the information, worst case scenario, 3-year outlook… other days, you don’t want to know the (health) information…it’s hard enough to get through the next five minutes.”
“I hated care conferences…I already know how bad his lungs are…tell me what we are going to do, the next steps.”
“I just wanted a chair.”
“The chairs were like the hard white plastic ones you are sitting on…”
“Can’t someone put a comfortable chair that reclines next to the beside?!?”
“There was no way to personalize the space.”
“I felt like I was intruding on the privacy of the parents and their baby next to us, I felt intruded upon. One day his parents weren’t there, but we were. He flat lined while we were sitting next to his bed…his parents weren’t there, I felt like it was my baby. The babies near you become your baby too.”
“All the equipment is so darn ugly…the colors, the design. It’s a monochromatic nightmare.”
“The NICU is the opposite of what you imagine your nursery will be.”
“Your primary nurse is the glue that holds everything together.”
“The curtain is weird…I felt weird using it…there needs to be some sort of partition for privacy in open bay designs.”
“I just needed a space to be alone and do nothing…or listen to music…I just needed to get away for a moment but there is no where to go.”
“I had to buy our baby a noise machine that makes jungle noises when we took him home. The quiet was foreign to him, he would wave his arms around agitated, but with the jungle noises he is okay.”
“I had to go into a separate room to pump my milk, but I wanted to pump near my baby. There was no where to sit and pump in private next to the bedside.”
A few parent stories:
I learned very early in my pregnancy that I had a unique set of twins. They were called “mo mo twins” monochorionic and monoamniotic. In this case, there was no barrier between my twin girls Rose and Layla. I was admitted to the hospital at 21 weeks as my cervix was opening. I spent 7 weeks in the hospital on bed rest under continuous monitoring until I deliver at 28 weeks. The morning of December 4th, (my husband’s birthday) they did an ultra sound and found that Layla was having difficulties. The umbilical cord was wrapped around her neck and she was showing signs of distress. I had an emergency c-section. Rose was thriving, showing signs of crying and such. Layla was resuscitated and put on life support. Unfortunately, she went too long without oxygen to her brain. She did not respond to pain or light. On December 5th we had to make the very difficult decision to take her off life support. This was all very overwhelming and traumatizing. Rose spent 8 additional weeks in the NICU. She received amazing care and love. I am eternally grateful for all the care she received at the NICU. She will be three this December.
My youngest daughter was born full term and apparently healthy, but the day we brought her home from the hospital she stopped nursing and fell into a coma. She was sent to the NICU for a battery of tests, where they discovered that she had a genetic metabolic disease. She was put on dialysis and many medications to treat her condition, which required two full time nurses to manage. After two weeks, she graduated to no machine and only one nurse. She stayed in the NICU for a total of 6 weeks, while her condition was brought under control, and we learned how to take care of this fragile baby. She would need special formula, mandatory feedings, and 10 different medicines given four times a day through her G-tube when we took her home. When she was six months old, she received a liver transplant from me, which cured her of her original disease. I have been working at Stanford Children’s Hospital for the last 10 years in the Family Centered Care Department. I help parents through mentoring, work on Patient Safety projects for Maternity, the PICU, and the hospital as a whole, and give presentations.
Everything was progressing nicely until about 22 weeks when Jenn developed pre-eclampsia. Jenn was put on immediate bed rest. Jenn did everything she could but unfortunately with her escalating blood pressure the neonatologist said we had to deliver immediately. Our daughter and son, Reece and Graham, were delivered on Thanksgiving day, November 23, 2006 by emergency C-section at 25 weeks and 3 days gestational age. After Jenn’s discharge from the hospital, she remained on bed rest for six weeks. I spent day and night at the NICU and took Jenn back and forth, as she was only allowed to be there for brief periods. Graham had an incredibly difficult journey but he was so strong, such a fighter. Our intuition knew that his time with us, during this lifetime, would be brief. Graham was with us for only 45 days, and we are grateful for every moment. When we look back, Graham had only one truly good day. It was the one and only day that Jenn was able to hold him. He was still on a ventilator at the time. Jenn and I remember our nurse telling us at least three times that day, “Graham definitely knows that his Mom held him today. He definitely knows.” It turned out to be just days before we had to say good-bye.
We want to thank everyone who participated today. Obviously, this is not an easy topic of conversation. A lot of courage is required to talk about such a personal life event in front of a lot people you don’t know. We appreciate your openness because we also realize it is a necessary conversation if we want improvements that make a difference to families in the NICU.