Kristina Elverum was in a daze during the one-week post-partum follow-up at her obstetrician’s office. The friendly receptionist asked, “How far along are you?”
Elverum, standing alone in the waiting room, taking in the bevy of late-term pregnant women and new mommies cradling their newborns, quietly responded.
“I told her I’d already had a baby, then she was looking around for her, so I asked, ‘Can you get me straight into a room, please?’”
At that moment, Elverum’s newborn, Kathryn, born nearly two months too soon, was hooked up to fetal heart monitors, pulse oximeters and IVs in her plastic isolette, inside a nearby neonatal intensive care unit (NICU).
Like all mothers of “preemies,” being confronted with actual new mothers and babies, as well as magazine covers bearing happy, full-cheeked infants, is at best, surreal, and at worst, suffocating.
“I couldn’t be around it,” Elverum recalls. “I’d see the full-term women or full-term babies and think, ‘That’s what should have happened.’ It was really hard.”
In Elverum’s case, very little about the pregnancy and birth had been easy.
“I had a pinched nerve and pregnancy-induced carpel tunnel, then at six months I was diagnosed with gestational diabetes, so I gave myself insulin injections three times a day, and I was testing blood sugar four times a day. It was a lot of poking myself,” Elverum recalls, wincing slightly. “But you do it because you have to. You have to keep the baby safe.”
By the seventh month, Elverum was receiving weekly fetal monitoring and ultrasounds.
“Then my stomach started hurting; it felt like a gall bladder attack.”
The severe abdominal pain was caused by elevated liver enzymes, a symptom of preeclampsia. “Kathryn was fine, but my blood pressure was high.”
Once doctors diagnosed Elverum with preeclampsia, things happened quickly.
“They hooked me up to an IV of magnesium sulfate [to prevent seizures], and they told me, ‘The only way to cure you is to have the baby now,’ and everything was a blur, but Kathryn was born at 6:27 pm. She weighed three pounds, five ounces, and other than being really small, she was perfectly healthy.”
PREECLAMPSIA AND PREEMIES
Ten percent of all pregnant women get preeclampsia, also known as toxemia. While it presents with different symptoms (high blood pressure, protein in urine, blurred vision, swelling), all of them are dangerous to the mother and unborn baby. Preecampsia.org estimates that 15 percent of all premature births are caused by preeclampsia, and that it costs $3 billion a year.
Shannon Abernathy’s first sign of preeclampsia was blurred vision.
“I wasn’t reading the pregnancy books because I had already had a full-term baby,” she says. Abernathy’s firstborn, Natalie, was four-and-a-half years old at that time.
“I knew this pregnancy felt really different, but you always hear each pregnancy is really different, right? Yet I always had a sense something was wrong.”
By the time doctors found protein in her urine and noticed Abernathy’s usually low blood pressure had elevated, she was only 24 weeks along. The kindergarten teacher was ordered away from her classroom and into bed.
But nothing improved in those few days of bed rest. In fact, it got worse.
Once she was admitted, doctors realized Abernathy’s baby was nearly out of amniotic fluid and had stopped growing.
“They put me on an IV to try to build up the amniotic fluid level overnight, but she was so small they couldn’t read anything on her fetal monitor, so they told me we needed to do a C-section. And as we prepped for surgery, the surgeon started giving us statistics,” Abernathy recalls, still incredulous.
“I want to say it was like a 40 percent survival rate at 24 weeks, and a 70 percent chance of ‘mental retardation,’ and I was wondering, ‘What exactly is the benefi t of this? I’m still having the C-section!’”
When her second child, Violet, was born, she was just 426 grams, or 15 ounces — not quite a pound.
“I didn’t know what a 24-week baby looked like. But I was thinking, ‘If she’s alive, she must be okay.’ I was naïve.”
Compared to a standard newborn nursery, “okay” looks incredibly different in the NICU. And while the conditions of the mother can greatly affect the state of their tiny patients, neonatologists do follow a set of standard procedures.
“With micro-preemies, if you make it through fi rst 24 to 72 hours, it sets the tone for how the rest of life is going to go,” says Dr. Jami K. Lewis of the Sacred Heart Children’s Hospital. “We have a three-page admission order that sets the diagnoses. The babies are going from an environment where they’re living in fl uid to one with air. The more premature, the less adaptable their skin is for outside environment,” Lewis continues.
“Normally, a full-termer will lose 10 to 15 percent of their intracellular fl uid, but the more premature you are, the more rapidly it is lost,” Lewis explains. “So we know we have to carefully manage electrolytes, and preemies are prone to a set of bacterial infections, so we hook them up with antibiotics.
”What’s most jarring, especially to new parents, is the mind-bogglingly small amounts of medicine, fl uids and blood the caregivers are working with.
A standard unit of blood is 250 milliliters, or 8.5 ounces.
“If a baby weighs 500 grams, for instance, then their entire blood volume is 50 milliliters of blood (just 1.69 ounces, in their whole body). When we give a blood transfusion for a 25-weeker, that would be fi ve milliliters of blood. So a teaspoon is a typical blood transfusion,” Lewis says.
Caring for preemies means dealing with one or more simultaneous health issues, most of them carrying three letter acronyms. RDS, or respiratory distress syndrome, is related to underdeveloped lungs; necrotizing enterocolitis (NEC) refers to the necrosis, or death, of portions of the intestine. ROP, retinopathy of prematurity, may result in poor vision or even blindness. IVH, or intraventricular hemorrhage is bleeding in the brain that can cause a drop in blood pressure or seizures. All of these, and other “terrible threes” make taking care of preemies a balancing act.
“We try to guess which is the more serious problem. If we treat one, it could make the other problem worse. So we try a few techniques. Often we treat and then ask questions later,” says Lewis.
But while the size and scope of care is routine for doctors and nurses, it takes a few days for moms and dads to become accustomed.
When Abernathy first saw Violet, her diminutive, shiny frame (preemies are covered in a layer of petroleum to decrease the rapid loss of fl uids) was suspended on a cloud-like puff of hospital-grade batting. Over her tiny head was a minute breathing machine; her eyes covered with strips of soft fabric to shield her from light treatment.
“It finally hit me, ‘I have a micro-preemie. I have a baby who probably will not survive,” Abernathy recalls.
But like every parent, Abernathy, Elverum and their partners adjusted their old lives around this new reality: Visiting their newborn baby as she rests and grows inside a climate-controlled, artificial Plexiglas womb.
Elverum was at the hospital full-time, holding and feeding Kathryn at every opportunity until she went back to work (she is the marketing director at The Inlander). Each baby is on a schedule that allows for solid periods of sleep. Barring medical emergencies, there are allotted slots of time for doctor and nurse exams, fluid management and parent visits, called “care times.”
“I would go to the 11 am care time, and I would ask the nurse or doctor, ‘What’s the next step toward going home?’ and I’d tell Kathryn, ‘You need to do this,’ and she would. I’d never had a baby before, I didn’t know what I was doing. I just went by what they said. You’re told when you can hold her, and when you can’t, and when to go home,” Elverum recalls. “Putting her back in the isolette and leaving; you know it’s in the baby’s best interest, but it’s really hard to do.”
For the Abernathys, it was like living a double life.
“It was hard to have a child at home that we couldn’t bring in [to the hospital room]. How do I find a babysitter to go visit my other baby? I’d feel guilty when I couldn’t see Violet, and I felt guilty pawning my older daughter off,” she says. “And coming home from the NICU, especially after a really hard day, I’d be pretending to be happy; that ‘life is fine,’ because we didn’t want to worry Natalie. You can’t have two depressed parents when you’re four-and-half years old.”
While her stay in the NICU was extended — 87 days — Violet shocked her doctors and nurses by escaping the gravest procedures, considered almost routine with babies born under 500 grams. With the exception of a bout with necrotizing enterocolitis (NEC) and the resulting complications with her liver after intravenous feeding, Violet was dubbed the “smallest surviving, healthy baby ever born at Deaconess.”
Elverum’s baby Kathryn wasn’t so lucky. Not after the first month in the hospital, anyway.
“They can never promise you anything, but someone in the NICU said, ‘I bet you’ll be out of here in the next two weeks,’ because Kathryn was eating well and gaining weight. That was before she got sick.”
During one of their routine care times, Elverum and her partner Shane noticed their baby’s otherwise mellow attitude and demeanor had changed; she was writhing in her blankets and crying.
Then Kathryn’s typically mellow dad’s attitude starting changing, too.
“Shane was watching the [heart and breathing] monitors, and he was saying, ‘There’s something wrong. Her rates are off. The nurse needs to do something!’”
At this time, the family was in the intermediate nursery, where babies go when they are no longer critical. Dr. Lewis refers to them as “growers and feeders.”
When Elverum called from home at midnight, the overnight nurse told her Kathryn had had a fever, but that it had gone down. Yet by the time she arrived for her 11 am care time the next day, “They had drawn labs because her temperature was high and her irritability was increasing,” Elverum says. “I could feel the tension rising in the room as we waited for the results and Kathryn’s breathing began to be labored.
“That ended up being the last time I got to hold her for a week.”
Kathryn was admitted back into the main NICU, hooked up to IV antibiotics and a ventilator.
Right now, as Elverum cradles her strawberry blonde baby, she tears up recalling the pain and uncertainty of that time.
“They told me she had late-onset Strep B, but by the next morning, they were pretty sure it was meningitis. I think they didn’t think she was going to make it.”
It’s still unclear where the string of medical symptoms began, but Kathryn was now also dealing with hydrocephalus, a buildup of fluid in the skull that eventually causes pressure on the brain.
“She had sensitivity to sound, and she was tremoring and shaking. They called it ‘neurological disturbances.’ It was around that time we met with the neurosurgeon. He diagnosed her with moderate to severe cerebral palsy, which was caused by the meningitis. That was the hardest week of my life. There were no glimmers of hope. I just wanted somebody to say, ‘It’s going to be okay,’ and they couldn’t.”
But Shane could. Already a father to four children, Elverum says he was able to offer wisdom and assurance that she couldn’t grasp.
“He was the eternal optimist through it all, which is something I desperately needed. Every time we got news, he would say he didn’t think it would be as bad as they predicted and reminded me that they didn’t know anything for sure. When I would cry and ask, ‘Why is this happening to us?’ he would tell me that, ‘God had chosen us to take care of her and that we will love her and take care of her no matter what.’ He has helped me to stop stressing out about what might happen and to just live in and enjoy the moment.”
And so Elverum does. The only apparent difference between Kathryn and other newborn babies is the two-and-a-half inch lump on the upper right side of her forehead, where a shunt was placed to relieve the pressure from the hydrocephalus.
Their play and interaction is careful and focused. Elverum is humbled by the “awesome” team of specialists at the Guild School working to help Kathryn reach her physical and cognitive baby milestones.
“Every obstacle that she overcomes and milestone she hits is cause for celebration,” Elverum says. “I can’t believe how far she has come in the short three months that she’s been home.”
Violet, now seven-and-a-half years old, also received occupational, speech and cognitive therapy in her fi rst two years of life. At her last physical a few months ago, she was in the 13th percentile for weight, and the 24th percentile for height.
“And you know what?” says Abernathy. “I’m just thrilled we’re on the chart at all.” At 45 pounds, Violet is more than 45 times her birth weight.
“Going through something like this really shows you what’s important,” says Elverum, nuzzling her baby. “Nothing can give you that perspective — that shift in life. The only thought that matters is that she is okay, and I am okay, and we’re a family.”
Worth the Wait
A new effort in Washington state to reduce elective delivery before 39 weeks has resulted in 650 fewer optional early births statewide in a year, according to the March of Dimes.
In the past, for various reasons, women have opted for delivering their babies a week or two early even though there was no real medical need. But new research shows the last week or two of pregnancy is an important period, allowing the baby to add body fat and finish up important lung, liver, ear and eye development.
Though the last few weeks of pregnancy are generally not that much fun for mom, the “Healthy Babies are Worth the Wait” campaign aims to educate women, doctors and hospital staff about the risks of even slightly early delivery.
Learn more at marchofdimes.com.
— Anne McGregor