For three years, Jazmin and Phillip Walker had been trying to have a baby. Jazmin bought clothes and furniture for a girl, convinced she would have a daughter. She was elated and prepared for parenthood when she became pregnant, but the baby’s birth would be a surprise. At just 24 weeks and four days gestation, Aurora Walker was born weighing one pound and five ounces.
Instead of taking her newborn daughter home within days of birth as they had envisioned, the Walkers would spend more than six months at Aurora’s bedside at Community Regional Medical Center in downtown Fresno.
“She’s had quite a journey,” Jazmin said of the health hurdles her daughter has overcome. At six months, with Aurora weighing 11 pounds and nine ounces, she prepared to take her daughter home a week before Mother’s Day. Holding the baby up for all to see in a bright pink onesie, she expressed gratitude to the UCSF Fresno Neonatal Intensive Care (NICU) and Pediatric Intensive Care (PICU) physicians and teams of nurses, respiratory therapists and other staff at CRMC who cared for her preemie daughter.
“Everyone was always very attentive to come and check on her. Every morning, I knew the pulmonary team was coming in, the (UCSF Fresno) residents were coming in and the (UCSF Fresno attending physician) was coming in,” Jazmin said.
Aurora’s care was complicated and required a coordinated team effort led by UCSF Fresno neonatologists in the NICU and by UCSF Fresno pediatric intensivists after her transfer to the PICU. With lungs not fully developed, she had to be placed on a ventilator to help her breathe. She had cardiac problems secondary to her premature lungs. Feeding had to be done via a tube inserted at first through her mouth and later into the stomach.
Having the NICU and PICU in the same hospital allowed for a smooth transition as her care progressed. At one point, there was discussion of sending Aurora to San Francisco for her heart condition and that was terrifying, Jazmin said. “It was great being able to stay here and be able to just transfer to the other side of the hall versus having to go to a whole other area where we would have to figure out how we were going to live there and how we were going to be able to be supported there,” she said. “And it was great to just stay here and with a team who already knew her and knew what was going on with her. It couldn’t go any better than that honestly.”
An entire team of physicians, respiratory therapists, nutritionists and pediatric sub-specialists worked together, said Victor Vargas, MD, pediatric intensivist and co-director of the PICU at CRMC. “All I can express is gratitude for too many people – for everybody who worked and who was able to get Aurora up to the age to be able to transfer to us and for all my team who spent every single hour caring for this kid.”
Aurora was tiny, but she was a fighter, said Diana Malancea, MD, a third-year UCSF Fresno pediatric resident who took care of the preemie in the NICU for a month at night and during the baby’s last month in the PICU. “She made it through a lot of the complications that a lot of babies don’t.”
At Aurora’s birth, Jazmin said she told her daughter to take charge – “she was the boss” – and Aurora took the message to heart. She had to be intubated four times for placement of breathing tubes and one of those times, she pulled out the tube. “She’s feisty,” Jazmin said. “She does what she wants.”
At CRMC’s PICU, a parent can stay in the patient’s room for as long as it does not interfere with the care. The Walkers rarely left their daughter’s bedside throughout her hospitalization, and Jazmin said the support of her father, in-laws and church community allowed them to be with Aurora.
UCSF Fresno pediatric residents and their attending pediatric intensivists welcome involvement of parents in care planning. “We’re always involving the family,” Dr. Malancea said. “That is the way we do medical care in pediatrics in general. We try to involve the family and make them part of the team. So, it doesn’t matter how many times we change (shifts), the family is always part of our team so then we have a constant in the picture,” she said.
The Walkers were grateful to be included in care decisions. Aurora’s lungs were so premature she needed mechanical help breathing and eventually she needed a tracheostomy (a surgical opening through the neck into the windpipe) to be able to breathe on a ventilator long-term. The Walkers had hoped the surgery would not be necessary and were hesitant until the team explained that wearing a ventilator mask felt like a car blowing air on your face. “OK, we’re not going to do that to her, so we went ahead with the trach,” Jazmin said. “It was hard to see her unable to move and stuff like that, but now that we’ve gotten past the healing point and she’s thriving, she’s happy. She’s moving. She’s a baby again.”
It’s extremely important to involve parents in the patient’s care, said Chris Prince, a respiratory therapist and clinical coordinator for pediatrics at the PICU. “It’s their child. They’re going to be home taking care of their baby.” The Walkers were shown how to use the ventilator at home, how to administer medications and how to take care of the tracheostomy tube – even how to take it out and replace it in emergencies. “It was a long road, and we have a great team here and everyone did a great job,” Prince said.
Aurora’s care involved a lot of work from a lot of people, and especially the devotion of her parents, said Dr. Malancea. “Sometimes we tend to think, ‘oh it’s just a baby – they don’t understand much,’ but you can see how Aurora is connected to them in a special way,” she said. “When they’re here, she is so much better. She is so much calmer. It is so much easier to assess her and do everything because the parents are here.”
Jazmin said the physicians and care team showed the family patience and kindness during the six months Aurora spent at the hospital. “They’re just a great group of individuals,” she said. “They’re the ones who kept her alive. They helped her thrive. And then they have taught us everything we need to know so we can be successful when we go home. I am very grateful.”
