By: Jason Sheppard
After one local couple spent nearly half of 2018 with their daughter in the NICU, they are all now enjoying life at home
When Grace Sweeney was born on June 19, she weighed only two lbs. Her head was only 23.5 centimeters, the size of a “small orange” according to her mother Emily. “She was so tiny. I don’t want to think about how tiny she was,” she says.
Long hospital stay
Because Grace was born prematurely, or preterm, she spent 27 weeks in the Janeway Children’s Hospital in St. John’s. The long hospital stay was not easy on mom Emily or dad Chris Sweeney of Paradise. In Newfoundland and Labrador, one in 11 to 12 babies born are born preterm – which is any birth which occurs less than 37 weeks of gestational age.
“The more preterm a baby is, the more involved the care is. The level of care increases if a baby is born smaller,” explains Dr. Julie Emberly, Chief of Neonatology at the Janeway.
“We would like more people to be aware of the challenges that babies who are born earlier face,” explains Emberly.
“Their lungs aren’t fully developed, and their brain is still growing so they will have to do a lot of development they would have done inside the womb, outside. If they’re born really early, there can be a lot of challenges during their hospital stay.”
‘We felt guilty’
The Sweeney’s know this first-hand as they’ve been in there nearly 150 days from Grace’s birth. “It’s very stressful for families because they are unable to stay with their baby 24/7 unfortunately. We do try to involve families as much as possible,” adds Emberly. “Having the parents there is important for the babies too.”
Emily would usually arrive at the Janeway at 9:30 AM and then stay until 3:30 PM where she would then pick up their four-year-old boy, Thomas, at daycare. “I’d get him his supper, give him his bath, put him to bed and then I’d come back and stay with Grace until 11 or 12.”
Chris’s schedule was very similar. “I’d pop up in the hospital for an hour during my lunch, come up for supper, go home to see Thomas and then come back again. We were trying to split everything up as much as possible to keep everything normal for Thomas,” says Chris adding that his employee has been “fantastic” to the couple and have even held charities to help them out. “We don’t ask for money by any means but people want to help.”
“We felt guilty leaving Thomas,” Chris confesses. “I think any parent with a child in the NICU and has a child home will say the same thing.”
Emily feels the same way and is grateful to the Janeway staff for making it easier. “We got a lot of support from the staff and the doctors and the nurses and the social workers.”
World Prematurity Day
The Janeway partners together in helping babies grow and develop and they know the importance of family being critical to how preterm babies progress over time. “We just try to integrate and collaborate with families, ” said Emberly. “The staff there have been amazing,” Chris offers. ”You can sit down and have a chat with them because we’ve been there for so long you get attached to these people.”
“We know every single nurse – all 72 of them,” laughs Emily. Today, Grace’s parents say she is doing “fantastic.” She has required multiple blood transfusions and has had to be incubated for over 100 days but today her lungs are good, her ultrasounds are good as is her heart blood work. “She’s a fighter and she’s feisty,” Emily remarks on Grace’s strength. “She’s a trooper.”
“Our family is a huge support to us,” Chris shares. “I’m sure there are lots of groups out there to help, but we just kind of keep to ourselves. We don’t ask for help. That’s just the type of people we are. But we have been offered a ton of help.”
In November 2018, the Sweeney’s took part in the Wee-Ones Walk held on November 17 in recognition of World Prematurity Day. “There were so many people there and everybody had their story of their premature baby,” recalls Chris. “For so many people, it touched them. Just having that moral support.”
Emily and Chris took part in the walk to honour the child the couple lost last year. The boy, who was born at 26 weeks, lived only for two days. “The staff were so compassionate towards us. They shed tears with us when our little boy passed away,” Chris remembers.
Thoughts and Gratitude
“It was a tough evening but we were comforted and supported. I’ll never forget it as long as I live.” Emily says that Grace was their “second go-around” within the NICU.
In November, Emily and Chris brought Grace home from the Janeway where she enjoyed her very first Christmas with mom, dad and older brother Thomas. While they are grateful to have their daughter home, their thoughts and gratitude are with the Janeway staff. “The care and support we’ve been given at the Janeway has been second to none. We can’t say it enough; they’re amazing people.”