- Associated Press - Friday, July 15, 2016

LANE, Kan. (AP) - As soon as Kaylee Hurt heard that Ashley Taylor was in the hospital and rushed there only 25 weeks into her first pregnancy, the former schoolmate felt compelled to act.

She prayed. She reached out.

“Hang in there. Stay strong,” Kaylee recalled messaging a frightened Ashley on Facebook in late February. “If you need anything, please don’t hesitate to message me or call.”

As the mother of a micro preemie herself - a daughter, Kaydee June, born nearly four months early at a minuscule 1 pound and 6 ounces in 2013 - Kaylee understood what might lie ahead.

Because they are born exceedingly premature (before about 28 weeks of gestational age), micro preemie babies are also exceedingly fragile. They are the smallest of the small, accounting for less than 1 percent of the nearly 4 million babies born each year in the United States. They generally weigh no more than 1,000 grams, or 2.2 pounds.

But because of steady advances in medical care, micro preemies are now surviving at, and even progressing forward from, ever-younger gestational ages.

“Initially, we went down to about 1,000 grams, and then it was 750 grams, and then it was 500. Now it’s 400 grams, but they have a lot of complications,” said neonatologist Katherine Schooley, who cares for micro preemies at Overland Park Regional Medical Center. “We go down to about 22 weeks of gestation now. We only just started treating those tiny babies about a year or two ago.”

The Kansas City Star (https://bit.ly/29FPCsB ) reports that born at 625 grams, Kaydee had spent 280 days isolated in neonatal care units, first at Overland Park and then at Children’s Mercy Hospital. At birth, her head was barely bigger than an orange. Her hands and feet were like jelly beans.

Ventilation that kept her alive would lead to lung damage known as bronchopulmonary dysplasia. She was fed by a tube. Laser eye surgery corrected retinal damage from prematurity. Kaydee briefly “coded,” dying in the NICU before being revived at Overland Park and sent to surgery.

“That was the longest night of my life,” Kaylee recalled.

There’s no doubt that the earlier infants are born, the more problems they have. Every week an infant remains in its mother’s womb dramatically increases the health of the fetus.

Eugenia Pallotto, the medical director of Children’s Mercy’s NICU, cautioned that, even with advances being made, micro preemie health remains extremely complex. The percentage of micro preemies born at 22 weeks’ gestation that live long enough to be discharged from the hospital remains tremendously low.

“If you look at the literature, at 22 weeks there are really very few survivors,” she said.

On average about 6 percent of those infants tended to survive to discharge, according to a comprehensive study published last September in the Journal of the American Medical Association.

The JAMA paper evaluated the survival, illness rates and care of some 35,000 extremely premature babies born in a 20-year period, from 1993 to 2013 at more than two dozen NICUs across the country.

Of the very few 22-week infants that did live, almost none survived without what physicians call major morbidities, such as blindness, severe lung damage or brain hemorrhages.

At 23, 24 and 25 weeks, survival was much better, 33 percent, 65 percent and 81 percent. But with few exceptions, all those infants also tended to suffer major complications.

On the more positive side, however, the study also showed that for micro preemies born at 26, 27 and 28 weeks’ gestation, survival rate percentiles ranged from the high 80s into the high 90s. At 28 weeks, more than half of babies discharged from the hospital even as far back as 2012 were leaving without major problems.

“During my pregnancy, I was so naive,” Kaylee said, expressing a sentiment with which Ashley could easily relate. “I had no insight into this world at all.”

“It is a whole different world,” Ashley agreed.

Such early births are almost always accompanied by a host of stresses and worries for parents about their children’s lives, their health and the complications they might face.

So when Kaylee heard about Ashley, it no longer mattered that the two of them had never really been close friends.

Yes, they had always been friendly. Yes, they had known each other most of their lives. In this rural town of 200, where both now live about an hour south of Kansas City, everyone knows everyone.

Twenty-eight-year-old Kaylee and Ashley, soon to turn 30, had gone to the same grade schools and high school in Osawatomie.

But Ashley graduated in 2005, and Kaylee was a year younger.

“We never had the same group of friends,” she said.

Ashley lived then in Osawatomie and was a high school basketball and volleyball athlete who would go on to become a social worker. Kaylee was a country girl, a champion rodeo barrel racer who continues to teach the sport. She was raised riding and training horses in the same place she now lives with husband Trevor and daughter Kaydee.

Their 500-acre spread, Burrows Ranch, was started by her great-grandfather. It’s where Kaylee’s father once trained racehorses.

“It’s going to be tough,” Kaylee cautioned Ashley early in her hospital stay. “But stay strong. You’ll be fine.”

Pre-eclampsia, a condition that causes dangerously high blood pressure in the mother, meant that Michael and Ashley Taylor’s baby girl would be coming more than three months early.

“We never really had any reason to cross paths or anything,” Kaylee said.

On Feb. 29, the reason arrived - Austyn Taylor weighed 1 pound and 11 ounces.

Also born that day was “an unexpected friendship,” Ashley said.

Ashley drove her SUV up the gravel road to Burrows Ranch on a morning in late June.

She felt excited. Austyn, after spending 103 days in the NICU, had just been released two weeks prior, still on oxygen.

Weight now: more than 8 pounds.

Fearful of placing her daughter in the way of any kind of cold or flu bug that might send her back to the hospital, Ashley and Austyn had barely left the house.

“I’ve been going a little stir crazy,” Ashley said. “Today, when I was coming over here, I was like, ‘We get to go out!’ “

Kaylee understood perfectly.

“When we came home July 1, 2014,” she said, “Trevor and I did not leave the house for, like, two months. Not a lot of people have still seen her.”

Kaylee greeted Ashley at the back door, not far from the barn with the horses and a new litter of mewing kittens, and where a clear message is taped to the glass panes:

Trach Baby

Oxygen In Use

Kaydee, who turns 3 on Sept. 24, has a tracheotomy tube at the front of her neck that allows oxygen to flow through a hole in her windpipe.

Do NOT come in this house if you are sick, have been sick or have been around anyone sick. Thank you for understanding, we appreciate it!


Kaydee June (a healthy trach baby)

So it goes for the parents of micro preemies.

“I think a lot of people just don’t know about prematurity,” Ashley said.

By that she wasn’t speaking just of the physical demands, but also of the emotional upheaval, of what’s required of them as parents and sometimes how difficult it can be to relate what she and Kaylee called their “mom journeys” to those of other parents.

“I have, like, five friends and family who are trained in trach CPR,” Kaylee said.

This was the first day that Austyn, born 4 months ago, was being introduced to Kaydee. The child, coloring and playing with her Minnie Mouse dolls, seemed little engaged by the infant sleeping in the crook of Ashley’s arms.

But Kaylee and Ashley, sharing a common vocabulary, spoke as if they had been friends for years, shifting from topic to topic: the difference in care from nurses and doctors, the heart condition caused by Austyn’s prematurity, and the oxygen saturation levels of her blood.

“She goes to the NICU follow-up clinic next week,” Ashley shared, “to see if she can come off oxygen.”

“How often does your home health nurse come?” Kaylee asked.

It’s supposed to be twice a week for two weeks, Ashley returned, and then once a week for a short time afterward.

“But insurance wouldn’t pay for it,” she said, “because they said she was a ‘well baby.’ “

Kaylee: “And you’re like, ‘Yeah, she’s a well baby on oxygen.’ “

When the liquid gurgling in Kaydee’s throat grew louder, her mom casually flipped on the motor of the portable suction machine. The pump rattled to life. Kaylee inserted the suction piping into the tracheotomy tube.

A ball of liquid whipped up the line.

“Got one. Got it,” Kaylee said, as casual as a mom wiping her child’s nose.

Ashley didn’t stir. Common experiences, like spending months in a NICU, can forge quiet bonds.

“I kind of feel like it’s a relief just in the fact that you don’t have to try to explain anything,” Kaylee said. “They already know. And you don’t have to sit here and try to tell each other, like, fake it, ‘It’s OK and everything’s going to be great.’

“We can be just like, ‘Dude, this sucks.’ And we know the other one gets it.

“We also are there to encourage each other too. We kind of say, ‘It sucks, but it’s going to get better.’ “

Advances in the NICU care of micro preemies have made a big difference, said Schooley, the Overland Park physician. The biggest key to better survival and less illness has been the development of better ventilators, she said, in combination with vastly improved artificial surfactants, chemicals that keep the lungs of preemies open, allowing them to breathe and grow.

Overall, doctors are handling babies less in the NICU, reducing their stress and allowing them to mature. Surgeons, too, are less aggressive about fixing the patent ductus arteriosus problems, which can put a strain on the hearts of many preemies.

Prior to birth, two major arteries in a baby’s heart - the aortic artery and pulmonary artery - are connected by a blood vessel called the ductus arteriosus. It allows the fetus’s blood to go around its lungs before birth.

Soon after birth, that vessel is supposed to close. In micro preemies, it sometimes doesn’t. Surgeons used to jump in early to close it. Now they’re waiting longer, even allowing it to close on its own. Austyn’s PDA, for example, had yet to be closed.

“It turns out that some of these babies end up doing better when we back off,” Schooley said.

None of which is to suggest that micro preemies don’t get major problems.

“I can list complications from their heads down to their toes, basically,” Schooley said.

They can vary drastically based on how early a baby is born. A week, or even a few days, in either direction can make a big difference.

The brain can be compromised because of bleeds or lack of oxygen, leading to motor disorders such as cerebral palsy or learning and behavioral problems. Early birth can affect the lungs, hearing and sight, even leading to blindness. Some premature children have colitis-like intestinal problems or even perforated intestines that require surgery.

Kaydee has her trach tube. She also currently has a gastrointestinal tube in her belly to help her eat. It’s not that she’s incapable.

“She just has a very bad oral aversion,” Kaylee explained, “because so many bad things were forced into her mouth. So she had no good thoughts about things going into her mouth.”

But the family is working on it. They are working with an occupational therapist as well as a speech therapist, with the expectation that she will take food orally within a year or two. The trach tube should come out long before then.

Other than that, she is healthy and on track.

“She didn’t have any brain bleeds,” Kaylee said. “She doesn’t have cerebral palsy or anything like that. As of right now, she will be a normal kid.”

Which is exactly the kind of news Ashley likes to hear.

“I’ve had plenty of rough days where I’ve needed someone to give me perspective,” Ashley said of Kaylee. “She’s been that person for me. . I’m excited to watch our friendship grow and for Kaydee and Austyn to play. That’s something I’m looking forward to.”

Said Kaylee: “I’m looking forward to it as well.”

Soon the two were walking around the farm - Austyn in her stroller, Kaylee trotting alongside.


Information from: The Kansas City Star, https://www.kcstar.com

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