Hospital's tiniest baby heading home

She weighed just 15 ounces when born in December

By Marissa Harshman, Columbian health reporter

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Baby Harley Then and Now

Harley Gulliksen, whose birth weight was a mere 15-ounces on December 20, 2012, has gained weight and is going home after a long stay at the hospital.

The evidence of Harley Gulliksen's achievements line the doorway into her room.

"Central line in for 47 days and remained infection free!" "24 days on the ventilator and remained pneumonia free!" "Nippling entire bottle!" The laminated certificates announce her milestones to anyone walking through the neonatal intensive care unit at Legacy Salmon Creek Medical Center.

Five months ago, those milestones weren't guaranteed.

When Harley was born prematurely on Dec. 20, she weighed just 15 ounces. She measured 10 inches. Her tiny arm was shorter than an adult's pinky. Her foot wasn't much bigger than a quarter.

Even though Harley was born at 271/2 weeks -- a full-term pregnancy is 38 to 40 weeks -- she was closer in size to a fetus at 22 or 23 weeks. She is the smallest surviving baby ever to be delivered at Legacy.

Harley's record-making arrival was featured in the Christmas Day edition of The Columbian. Friday, baby Harley will finally go home.

"I'm really excited, but it's almost unreal because it's been so long," said Harley's mother, Tiffany Burril.

Harley's 149-day stay at Legacy sets another record: The longest stay in the NICU.

Harley got off to a good start; doctors thought she'd be home by her due date, March 20. But a couple weeks after birth, Harley experienced lung complications, said Dr. Bret Freitag, the NICU medical director. She spent 33 days on a ventilator while she fought an infection and a collapsed lung.

"She has spent the most time on the ventilator for any baby we've cared for here at Salmon Creek," Freitag said. "We managed to get her through a couple of really rocky periods."

When Harley goes home Friday, she'll take with her supplemental oxygen and medication to help her lungs, Freitag said. She'll likely need continuous oxygen for six to 12 months, he said.

"Her lungs can grow and get better and resolve some of these problems with time, but it's going to take quite a while," Freitag said. "Babies born this early never have 100 percent lung function."

One area where Harley has excelled is her feeding. Once she was able to eat by mouth -- for about 21/2 months she was fed through a tube -- she took to it quickly, Freitag said.

As a result, she's been growing steadily. While she's still quite a bit smaller than other babies her age, she's been making progress.

"It's crazy seeing how much she's grown compared to what she was," Harley's dad, Mitchall Gulliksen, said. "She's just gotten bigger and bigger."

Now, at nearly 5 months old, Harley weighs 7 pounds, 6 ounces -- about the size of a full-term newborn. Harley measures 171/2 inches, which is about the size of a baby born at 33 weeks, Freitag said.

Doctors believe Harley's small size is due to a condition called skeletal dysplasia, which means her bones grow and form abnormally, Freitag said. "Her arms and legs and, really, her whole body are shorter than normal proportions," he said. She will always be smaller than other children her age.

Genetic testing will determine Harley's specific form of skeletal dysplasia. Some forms are associated with other health conditions, Freitag said.

Time will also tell whether Harley's early delivery will impact her ability to learn, walk and talk, Freitag said. She's started tracking with her eyes, smiling and making body movements -- all actions typical of a 2- to 3-month-old, he said.

Harley has also started to show her feisty personality.

She gives her parents an angry eye when they try to tickle her feet or arms. She smiles when she closes her eyes, but not when mom and dad try to make her laugh. She's not a fan of hats.

She does, however, love bath time and her bouncy chair. She makes bubbles with her mouth, coos when she's happy and kicks her legs as if she's trying to swim. She squirms and fusses, but she rarely cries.

Burril, 23, and Gulliksen, 22, look forward to watching Harley continue to grow -- hitting new milestones and celebrating new achievements.

"It's been difficult," Burril said. "But it's been fun too, watching her get bigger and stronger and prove all the doctors wrong."

Marissa Harshman: 360-735-4546; http://twitter.com/col_health;http://facebook.com/reporterharshman;marissa.harshman@columbian.com.