Some parents discover while pregnant that their baby will more than likely not make it to full-term (37 weeks of pregnancy) before being born. Others face premature birth spontaneously and without warning. In both cases, life instantly becomes chaotic and scary. Pleasant daydreams of what those first few days with baby will be like suddenly evaporate, and “typical” new-parent experiences are replaced with crisis management and healthcare jargon.
Kristin Moan of Nowthen, Minnesota, experienced preterm birth with identical twin girls who were both under 2 pounds. Her daughters spent more than 100 days in the Neonatal Intensive Care Unit (NICU). “In my case I didn’t know what was normal and what was abnormal,” says Moan. “My maternity leave was filled with specialist appointments, weight checks, surgeries, and worries of disabilities and health problems. When I returned to work, life consisted of driving back and forth from my job to the NICU. I didn’t know what it meant to breastfeed my children or have their newborn photos done. I have no maternity photos to look back on and no complaints about how big my feet were when I gave birth. But I have my girls—they just come with a few more doctors and nurses.”
Understand You Can’t Control Everything
If your babe-to-be arrives ahead of your scheduled due date, your initial reaction will likely be fear of the risk factors, such as low birth weight, baby’s lungs being weak or possible developmental delays later on. Karna Minnett, a retired NICU nurse and nurse educator in Denver, says, “The parents are for the most part terrified. The wheels are always turning as they wonder, How can I make this outcome better?”
Even if this isn’t how it was supposed to be, dwelling on what’s outside of your control won’t help anyone. Instead, focus on what you can do—however small—to rein in your worries and help your little one. It could be a long journey to walking out those hospital doors with your babe in arms, so prepare for a marathon, not a sprint.
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After the crisis of preterm delivery has passed (and the subsequent adrenaline has crashed), a NICU stay is both tedious and exhausting, says Minnett. Once a preemie’s immediate health needs are stable, full discharge of medical care could still be weeks or even months away. For parents, this means many trips to the NICU to change diapers, feed or simply touch their newborns. This is on top of postpartum recovery, work and—in some cases—caring for older siblings. Sean S. Daneshmand, MD, OB/GYN, maternal-fetal medicine specialist in San Diego and founder of the nonprofit organization Miracle Babies, points to parents’ self-care as the No. 1 game-changer in NICU outcomes.
“I always tell my patients that there are certain things that are in one’s control and others that are not,” says Daneshmand. “This is one of those times where you, as a parent need to pay attention to your own health by eating well, exercising, resting, meditating and practicing yoga. By keeping yourself healthy both mentally and physically, you will be able to address setbacks more calmly, ask better questions and make wiser decisions.”
Despite the anxiety that comes with preemies, one thing that many NICU moms and dads seem to have in common is gratitude. The parenting experience is stripped down, in a sense, to life’s most basic needs—the ability to breathe independently, to eat, to gain weight—and parents are thankful for every single milestone. Every step forward is one step closer to health and eventual discharge, and nothing is taken for granted.
Understanding the Risks
Not all preterm babies face the same challenges. Complications are greatly reduced with each day of higher gestational age and also with size. In short, the earlier the preterm labor and delivery and the lower the birth weight, the higher risk faced by the child and greater need for special care.
- What exactly defines preterm? Let’s break it down …
- A preterm or premature infant is any baby born before 37 weeks.
- Late preterm indicates birth between 34 and 36 weeks.
- Micropreemie or super preemie refers to a child born at fewer than 26 weeks of gestation.
Any preemie can face a myriad of health issues following birth, but micropreemies tend to encounter more medical conditions and problems, which lead to longer NICU stays. In addition to being prone to illness and infection, premature infants commonly face the following short-term and long-term complications:
- Cerebral palsy
- Respiratory distress syndrome and breathing problems
- Heart issues
- Cognitive impairment
- Hearing problems
- Inconsistent body temperature regulation
- Vision difficulties
Take heart, even in light of possible health complications, care for preemies is the best it has ever been. “These babies are resilient and tenacious,” says Minnett, who has worked in a NICU for 37 years. “They will fight for what they need.”
This can be a day-by-day, minute-to-minute, feeding-to-feeding journey—sometimes teetering on the verge of catastrophe and sometimes extremely repetitive and mundane. Those in the know advise practicing patience and gentleness.
Homeward Bound From the NICU
Discharge is a big deal for preterm infants and their families, especially after a long NICU stay. It is a moment that comes with mixed emotions—elation and relief, of course, but also fear and sadness. Leaving the comfort of the wonderful team of care providers can be difficult. Parents have come to know and love their nurses and specialists over the course of days or weeks in an unusually intense situation.
“We know that having a knowledgeable, supportive person in the home helps to improve anxiety, visits to doctors and overall family well-being,” says Tory Kielas-Jensen, postpartum doula trainer and director of operations at Welcome Baby Care in Minneapolis. “Postpartum doulas or in-home baby nurses who have been specifically trained to work with preemies are able to help parents understand what is going on developmentally with their child and how to meet their baby’s needs.”
If a trained professional is not in the budget, Minnett advises that families “rally the troops.” If there was ever a time to ask for help, this is it. From the minute a preemie is born, the parents must ask for and accept support—from friends, family, co-workers, hospital staff and beyond.
When the going gets tough (and it probably will), remember that every action, no matter how small or insignificant it might feel, makes an enormous difference. Every touch, every feeding, every book you read to her speaks volumes and strengthens the bond between you and your little one. It may not be the way you imagined taking care of your newborn baby, but you’re still taking care of her—and that’s what counts.