It was summer 2005, and Melissa Armstrong was having a normal first pregnancy.
“I was healthy and doing everything right,” she said. “The possibility of having a premature baby wasn’t on my radar at all.”
Early in her 24th week, Armstrong’s blood pressure began to rise. Despite being monitored, her condition changed rapidly, and by week 27, she was diagnosed with preeclampsia and HELLP syndrome, both serious pregnancy complications. Six days later her baby girl, Maya, was born prematurely at Poudre Valley Hospital in Fort Collins.
Weighing only 1 pound, 15 ounces, and measuring 13.5 inches long, little Maya was just big enough to stay at PVH’s neonatal intensive care, a level II NICU at that time. It was awarded level III in 2006. Maya spent the next 77 days there, during which time she was hooked to a ventilator, received five blood transfusions and fought a serious intestinal disease. Her parents, in and out of the unit to spend skin-to-skin time with their little girl, wondered if she would ever be able to enjoy the life they desired for her.
“When I first saw Maya, I was in awe of this beautiful baby that was so perfect yet so tiny,” Armstrong said. “It is shocking to see your tiny baby hooked up to countless wires and tubes, knowing they have a long journey ahead before they can come home with you.”
Being a ‘NICU parent’
Armstrong’s first moments as a mother may not have been what she had imagined, but today, her life is everything they dreamed it would be. Maya is now 11 years old. She is in the sixth grade, loves theater and has been learning to play the guitar.
Four years later, when Armstrong’s second child, Sofia, also was born prematurely at 31 weeks, it wasn’t any easier to watch her new daughter suffer, but Armstrong did know more of what to expect, and she had more hope that her daughter would fully recover.
“I knew with Sofia that there was life after the NICU … we had to just be patient and wait for that day when she had checked all the boxes for discharge,” she said. “Now, their prematurity doesn’t impact daily life at all. They are just typical girls, getting the opportunity to live life and enjoy it.”
Armstrong has spent the past 11 years spreading that hope.
“Melissa is one of those dear people — a wonderful mom that has been great for our unit,” said NICU Registered Nurse Rhoda Bailey, who also worked in the unit when Maya was born.
Since Maya’s early birth, Armstrong has kept in touch with PVH’s NICU staff, and she offers to help whenever they need it. Like many families who spend weeks, even months, in the NICU, she wanted to give back the kindness her family had been given, Armstrong said.
“We’re ever grateful for the opportunity to raise these girls and watch them grow up, thanks to their early care and medical research that allowed it,” she said.
Advising and improving hospital care as a NICU parent
Most recently, Armstrong became a founding member of the NICU Parent and Family Advisory Council.
“We started off with three very wonderful, motivated parents excited to give back to the NICU and make the way better for other families coming after them,” said PVH NICU RN Suzanne Richmond. “And it’s been really exciting, the things they’ve done.”
Richmond learned of advisory councils at a conference and she believed in creating one to help with the design of PVH’s new NICU unit.
PVH opened the first phase of its new unit in early 2016, which almost tripled its size from 9,700 to 22,400 square feet and expanded it from 19 to 32 beds.
The new council provided input into the square footage of the rooms and recommended milk storage refrigerators and sinks in each room, as well as a couch that could be made into a bed.
“For me, it’s not just about the baby, it’s about that family as a unit, about that trust leaving a baby in the care of others — forming that connection with parents so they don’t have to stress when they are gone — and it’s about them being able to stay overnight if they’d like to,” Bailey said. “The new space allows for that.”
Improving care for NICU families
When Maya was born, PVH’s NICU was a different place.
“Very different; there was very little space or privacy,” Armstrong said. “But the staff at PVH has always provided exceptional care to the tiniest of patients. Now they have a beautiful new facility to continue that level of excellence.”
The new unit, with its larger rooms, calming colors and natural light, is all about patient and family experience while also providing the best care with state-of-the-art equipment.
The second phase, which incorporated many more of the suggestions from the advisory council, including a parents’ lounge, opened in late October 2016.
“You are in a very fragile state when you have a child in the hospital,” Armstrong said. “Those emotions are running high, and you are dealing with a lot coming at you. It’s important to have a gathering place for families if they so desire to connect to others, a place to go and clear your head where you are not in the thick of things, and a place to eat so you don’t have to leave the unit.”
The advisory council also plans to organize activities that promote parents meeting and interacting with one another.
“When you are in the NICU, it feels like this will be life forever and that you’ll never be home as a family,” Armstrong said. “It is difficult to be there long term and see families come and go while you’re still trying to get through daily life in the NICU.
“Not every story is the same, but I think former NICU parents give hope to families in the NICU by sharing their story, being able to relate in part to their experiences now, normalize the crazy emotional ups and downs they are feeling and tell them again that there will be life outside the NICU. The rawness will fade. The fragility will fade. They will move beyond those early days.”