An unexpected birthday
At her 26-week prenatal visit on February 11, 2011, Sarah Guenther appeared to be having a normal pregnancy.
Two years had passed since her daughter, Lucille, had been born four weeks premature as a result of preeclampsia, a condition of pregnancy in which high blood pressure and protein in the urine develop after the 20th week. She knew she was at high risk to have preeclampsia again, but since a second instance of preeclampsia typically occurs later in pregnancy and is not as severe, Sarah, a radiation tech at Finley Hospital in Dubuque, wasn’t concerned.
Four days later, however, Sarah woke with the telltale signs of preeclampsia--her hands and face were swollen and she had rapidly put on weight. She was rushed to Finley Hospital where nurses gave her an IV and immediately prepared her for a trip to University of Iowa Hospitals & Clinics by ambulance. Doctors and nurses knew that Sarah needed the type of high-risk OB care that UI Hospitals & Clinics was able to provide.
With more than 14 weeks of pregnancy remaining, "the baby was coming too early. I knew they wanted her delivered in Iowa City,” Sarah said. "They knew the baby’s chances would be better here.”
Jonathan Klein, MD, medical director of the Neonatal Intensive Care Unit (NICU) at UI Stead Family Children’s Hospital, knows just how much better a premature baby’s chances are for a good outcome following birth at UI Stead Family Children’s Hospital.
Klein said babies born at 24 weeks have an 82 percent survival rate at UI Stead Family Children’s Hospital, compared to the 60 percent national average, according to figures from the Vermont Oxford Network. Each extra week in utero means a higher success rate: at 25 weeks the baby has an 86 percent chance of survival, compared to 76 percent nationally; at 26 weeks it’s a 90 percent chance of success, compared to 84 percent nationally; and at 27 weeks it’s 96 percent, compared to 89 percent nationally.
Sarah was en route to UI Hospitals & Clinics within an hour after arriving at Finley. When she arrived, doctors worked with Sarah immediately, hoping to delay birth until at least 28 weeks. Experts from both the high-risk OB team and the NICU stopped in to talk to Sarah and her husband, Jeremy, daily, letting them know what to expect if Penelope were to be born that day and to help them prepare for what might happen.
Sarah and Jeremy were willing to hope, but they weren’t optimistic.
"Having had preeclampsia before, I knew what was going on,” she said. "I knew the odds of me making it much farther in my pregnancy were not very good.”
Baby Penelope was born just three days after Sarah arrived at UI Hospitals & Clinics, weighing a mere 1 pound 6.9 ounces and was only 12 inches long – about the size of a Barbie™ doll. It was enough time to give two doses of steroids, which help the lungs and brain to mature faster and improved Penelope’s chances of survival.
"I didn’t know what my options would be, whether she would make it,” Sarah said. "I was glad to find out 26 weeks was a good number.”
As with every premature baby, all of Penelope’s organs needed assistance to function. She was fed intravenously and needed breathing support. When Penelope was 17 days old, a pediatric cardiothoracic surgeon, performed heart surgery to close a patent ductus arteriosus (PDA), a common occurrence in babies born prematurely in which a fetal blood vessel that allows blood flow from the heart to bypass the lungs before birth fails to close after birth.
The vessel typically closes within hours to a few days after birth as part of the normal changes as the baby’s body adjusts to life outside the womb. In some babies the blood vessel remains open, putting strain on the heart by increasing blood flow to the lungs and pressure in the lung arteries.
Klein said Penelope still weighed less than two pounds at the time of surgery, which took less than an hour.
A few weeks later, Penelope developed another complication of prematurity: staff discovered she had necrotizing enterocolitis, an inflammatory infectious process of the intestine. She needed to go without feedings for a full week, nourished only through IVs. Fortunately, the condition improved with antibiotics and bowel rest and surgery was not required.
Sarah has connected with other NICU families, and it helps to be able to share experiences.
"Being a NICU parent is so unplanned. There’s a steep learning curve. It helps to learn from other parents who have been there before. It makes the unknown not so scary,” Sarah said. "As time has gone on, it’s become easier to be here. The first two days were very hard.”
Penelope remains in the NICU at UI Stead Family Children’s Hospital – Iowa's Level IV NICU. That designation – the highest level available – means the unit is staffed by pediatric specialists specially trained and equipped to care for premature babies as well as those who are critically ill or born with birth defects. The NICU team – neonatologists, surgeons, nurses, nurse practitioners, nutritionists, respiratory and rehabilitation therapists, pharmacists, imaging specialist, social workers, anesthesia specialists, and others are on-site around the clock.
Klein said Penelope will likely remain in the NICU at least until the end of May or early June – her original due date was in late May.
"She’s a good fighter,” he said. "She’s gone through a lot and still has a long way to go, but she’s doing well.”
Sarah stays at the Ronald McDonald House near the hospital and spends her days with Penelope. Jeremy’s new "normal” includes returning to work at Roeder Outdoor Power in Dubuque and taking care of Lucille while Sarah focuses on caring for Penelope. While it’s difficult for the family to be separated, Jeremy is saving his paternity leave so he can spend time with Penelope when she comes home.
Sarah said she has to remind herself sometimes just how far her young daughter has come.
"All the changes you go through are so subtle you have to remind yourself just how significant they are,” she said. "We’re not talking about heart surgery anymore, so that’s something. Or maybe in a couple of days we can move to a crib, or sometime we can start wearing clothes. None of the changes seem very drastic, so it’s hard to see from day to day what progress has been made. But when you take a step back and look at it all, she really has come a long way.”
She cautions other parents to know what is available in the chance of the unthinkable happening.
"Everybody thinks it won’t happen to them. We were fine – until we weren’t,” Sarah said. For some of the families she met in the NICU, "They were fine and had normal pregnancies until an hour before birth.”
"It’s scary enough to deliver this early. To have your baby sent to another hospital right away would be awful. Being separated and not knowing baby’s condition is the scariest thing you can imagine,” she said.
Sarah has "built a rapport with the nurses. They all really care about the outcomes here. It’s not just about the medicine.”
That relationship started the day they arrived in Iowa City, Jeremy said, and continued throughout Penelope’s stay.
"I believe completely that at no point in this process could any decision have been made any better,” he said. "I felt the entire time that the staff struck a perfect balance between including myself and Sarah in the decision-making process, and acting with appropriate swiftness during a changing and serious situation.”
Penelope went home with her parents and older sister, Lucy, on Father’s Day, June 19, 2011.
Now 18 months old, Sarah and Jeremy Guenther say their daughter is a happy, growing toddler who “just keeps making strides every day.”
“She’s doing very well, she’s definitely going to be the instigator of my children,” Sarah says. “She already knows how to get into things, she knows how to bat her eyes to get out of trouble and she has her sister wrapped around her finger. Anything Penny wants, Lucy gets it for her.”
Because of the many weeks she spent in need of feeding and breathing support in the Neonatal Intensive Care Unit (NICU), Penelope is still adjusting to the taste and texture of food, which means she’s nourished about half the time through a gastrointestinal (GI) tube. She drinks from a bottle and eats some strained foods and baby foods.
Jeremy says Penelope is also getting mobile – she’s developed her own kind of crawling that helps her scoot about.
“She’s moving right along, it’s really fun to watch,” he says. “You just look at her and she’s got curly hair, and she’s gotten quite a bit longer recently, she’s gotten taller. She’s got some teeth and always has this big grin.”