Family homecoming for twins after 98 days in 'preemie land'

As a kindergarten teacher, Nick Windschitl knows how to handle little kids.

But he had no experience with children who could fit in the palm of his hand.

Not until August -- when his wife, Sara, gave birth to their twin daughters, Bryn and Nora, three months premature.

Bryn weighed just 1 pound, 4 ounces. Nora weighed 2 pounds. Both were whisked off to the newborn intensive-care unit at Children's Hospital in Minneapolis.

For the next 98 days, Nick and Sara found themselves in an alternative universe they called Preemie Land, where newborn poop was cause for celebration and nurses inserted tiny needles into veins the size of thread.

The Minneapolis couple documented their journey, for friends and strangers alike, in an irreverent and intimate blog (thetwinschitls.wordpress.com), taking readers through the extraordinary world of neonatal medicine and culminating last week, when they finally brought the babies home, just in time for Thanksgiving.

"We have had one heck of a road," said Nick, a shaggy-haired 35-year-old, who once wore a T-shirt at the hospital saying: "I Make Twins, What's Your Superpower?" Now that the girls are home, he said, "we still have to pinch ourselves how lucky we are."

As Nick wrote on the hospital's website last week, "People who don't have preemies probably never think about prematurity ... and people who do never STOP."

Sara, a third-grade teacher, was only 22 weeks pregnant when she was put on bed-rest -- she called it "hospital baby jail" -- to prevent early labor. She and Nick, who were married in 2010, were hoping to hold off the twins' arrival until at least the 28th week, which doctors had told them was a sort of "safety zone" for preemies. But the girls were born on Aug. 6, in Sara's 27th week of pregnancy.

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About 12 percent of babies are born prematurely in the United States, but only 2 percent are "very preterm," meaning less than 32 weeks, according to the March of Dimes.

At that stage, preemies face a host of medical hurdles, starting with trouble breathing because of underdeveloped lungs, said Dr. Ellen Bendel-Stenzel, a newborn specialist who cared for the twins at Children's. Some preemies can't feed properly because even breast milk is too difficult to digest.

"All of their systems are immature," she said. "The children can get extremely sick."

Hooked up to wires and beepers, the twins were so fragile that their skin seemed translucent, Nick said. At mealtimes, he and Sara would feed them drops of milk with Q-tips.

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Blog entry Aug. 11, 2012: Nick: "I love kids; however I have never particularly liked babies. I'm sorry to all of you whom I have faked out at baby showers, parties, drop-ins at work, etc. I've just never felt comfortable with them. ... I can write this, because I am now on the other side and understand what happens to people when they have kids. I get why people ask babies questions, why they talk with a squeaky voice, why they long to hold them."

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As days grew into weeks in the neonatal intensive care unit (NICU), Sara and Nick started speaking a new language -- of white cells and peripheral IVs and oxygen flow -- and shooting endless photos of the babies in their hospital digs.

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Aug. 15: Nick: "It would be easy to dwell on all the medical stuff and the day to day ups and downs of preemie-land. Instead, during our long hours in the NICU, I find myself fantasizing about fatherhood. I read a number of books on being an expectant father, and let me tell you, none of them prepared me for this."

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Nick remembers being awed by the size of full-term babies in the hospital. "Those babies looked like they could eat Bryn and Nora and still be hungry," he said. He and Sara took heart from any sign of progress, especially as the girls gained weight.

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Sept. 6, Sara: "We can't believe it. Our girls are 1 month (ok, negative 9 weeks) old, and together weigh almost as much as one (still pretty small) real baby!"

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By mid-September, the girls were strong enough to leave the intensive-care unit, though not the hospital. "Things were starting to calm down; they were maturing and responding to the therapies," said Bendel-Stenzel. At that moment, Sara said, she started to feel that "we're out of the woods."

But there were constant reminders that they weren't. Visitors were strictly limited because the babies were so susceptible to infection. And when friends asked when the babies would be going home, there was no clear answer.

Sara was still getting e-mails from pregnancy websites, telling her how her "fetus" would be developing based on the original due date.

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Oct. 7: Sara: "I just think, 'BAH! Due date, schmue date.' Nora and Bryn were always meant to be 27 weekers. Also, when I hold both of these largish-nuggets, I cannot picture them both still fitting in my belly. Fist pumps to my twin mom friends who carried to term. New. Respect."

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Then late last month, almost ready to go home, they learned that Bryn needed surgery for a hernia.

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Oct. 29: Sara: "So Close": "Hear that? Yeah, that's the wind being taken out of our sails. Seriously? We're like 3 bottles away from making a clean break and we gotta put our almost-5lb nugget under general anesthesia? Not. Cool."

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The surgery went well, and a few days later, the family held a unique celebration on Nov. 5. The twins wore paper hats labeled: "Today is supposed to be my birthday!"

A week later, they finally got what Sara calls their "get out of jail pass," and went home Nov. 11. The babies had more than tripled in size: Bryn weighed nearly 51/2 pounds, Nora more than 7 pounds. With their parents, they'll be hosting both sets of grandparents for Thanksgiving.

So far, the girls have thrived, as have their parents, says Bendel-Stenzel. But down the road, preemies are at higher risk than full-term babies for complications, such as vision, hearing, behavior and developmental problems. "But I am always amazed at the resiliency of these amazing children, despite their small size," she said. "The vast majority of these children do get better and do go on and have wonderful, healthy happy lives, albeit a stressful start."

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Nov. 14, Sara: "Home!! So we're a little behind with sharing this HUGE NEWS, but the girls are HOME!! ... Goodbye Children's! We owe you our firstborn(s). ... So now the fun really begins!"

Maura Lerner • 612-673-7384