On her first Mother’s Day as Aly’s mom, Cristina couldn’t even hold her child.
“I was devastated, I felt so frustrated and defeated.”
Aly was born premature at 24 weeks by emergency C-section after Cristina developed Hemolysis, Elevated Liver enzymes and Low Platelets (HELLP) syndrome, a life-threatening complication. As soon as she came into the world, Aly needed to be resuscitated. She had a ventilator to breathe, spent five months in the Neonatal Intensive Care Unit (NICU) and battled three rounds of sepsis.
Cristina and her husband, Devan, didn’t know what would happen next.
“We spent so long thinking we were going to lose her.”
That first Mother’s Day, Cristina found comfort in a kind-hearted nurse who made a card with Aly’s first handprints and footprints on it, which Cristina hadn’t been able to get yet because Aly was so fragile.
“It’s the smallest things, that you don’t think are a big deal. But that just got me through the rest of that month,” says Cristina. “Just having that, I was so happy.”
Aly spent the first 369 days of her life in hospital. She developed chronic lung disease and her airway began to narrow so she needed a tracheostomy – a surgical procedure to place a tube for breathing through the front of her neck. Aly also had a procedure to get a gastrostomy tube in her abdomen, to bring nutrition directly to her stomach.
During that first long year, as Aly got stronger, the Child Life team at HSC Winnipeg Children’s Hospital helped Cristina and Aly make positive memories. Child Life is a group of experts in childhood development who help kids just be kids while in hospital through meaningful activities like celebrating holidays, creating art, music therapy and much more.
“Having those opportunities for development and growth and just trying to normalize an otherwise not pleasant situation really meant a lot to me,” says Cristina.
Cristina remembers Christmas in hospital was the first time she saw Aly truly smile. Their Child Life Specialist, Stephanie, brought in a tree to decorate.
“It was half an hour of not thinking about what was going on,” says Cristina. “She was just looking in awe of this Christmas tree.”
Generous donors fund celebrations at HSC Children’s, like gifts for Christmas or birthdays. Cristina is deeply grateful for their support.
“It’s not just a toy that they’re giving, they’re giving a memory,” says Cristina. “They’re giving hope. They’re letting families know that there’s someone that cares for them at a time they need it the most.”
Music therapy also helped comfort Cristina and Aly in hospital. They had individual visits from music therapists and participated in group music therapy.
“It was so nice to get her out of the room, so she could see other kids and interact with them,” says Cristina. “It was so much fun. She loved it and it’s so good for development.”
Aly is now two and still loves music so much, she often waves her hands in front of the smart speaker at home trying to get it to play a song.
Aly will continue to need support from the team at HSC Children’s as she grows. She visits every two to four months for treatment to help stretch her airway, in the hopes that eventually her tracheostomy can be removed. She has a developmental delay but is still healthy and growing.
Right now, only Cristina, Devan and medical professionals are able to look after Aly because her care is so specialized. She’ll start daycare in the summer of 2022 with the support of a full-time nurse. Aly is learning sign language to communicate and loves to play, share and show affection to her family.
“The scariest moments in the hospital are when I wondered if she’d be able to smile, if she’d be able to walk, if she’d go to school, if she’d be able to play with her sister, Lexie,” says Cristina. “Now I know that she will be able to do all that so I’m just so grateful she’s happy.”
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