Is my baby getting enough food? Is my baby growing at an appropriate rate? Is my baby’s breathing normal? These are just a few of the questions parents of newborns ask themselves on a regular basis. However, these are also questions that parents of babies born premature ask themselves multiple times a day. Shantel P. shared that when she was finally able to take her son home from the hospital, she was fearful of not having a scale at home to weigh him after every feeding and not having alarms that would go off in case he stopped breathing. “Every cold he got I was afraid he had RSV which would lead to more hospital stays.” Luke H. shared that the hardest thing about bringing his daughter home was all of his worrying. He stressed about her feeding regiment and if she was getting enough calories. He also stressed about her breathing and if it was normal. He shared that years later, he still worries about her breathing. Ken H. shared that the hardest thing about coming home with his preemie was worrying about episodes of bradycardia, an abnormally low heart rate usually associated with apnea. He spent two weeks watching monitors that would show his son having spurts of bradycardia, which made it challenging for him to sleep at night as he constantly worried about his son’s breathing affecting his heart rate.
Premature births: The Stats
The Center for Disease Control defines preterm birth as any baby born before 37 weeks of pregnancy. Amy Mueller, March of Dimes NICU Family Support Coordinator, shared there are “380,000-plus babies born premature in the US each year. In Ohio, approximately 270 babies are born premature each week.” The CDC estimates that in 2016, one out of every ten babies born in the US was born premature. Amy shared that “premature birth is the leading cause of death for babies and the leading cause of death of children under the age of 5 worldwide. Fifteen million babies are born premature worldwide each year and nearly one million do not survive.”
During the final weeks of pregnancy, the brain, lungs, and liver finish developing. Babies born prior to 32 weeks have a higher rate for death and long term disabilities. The March of Dimes website states that, “Babies who survive premature birth often have long-term health problems, including cerebral palsy, intellectual disabilities, chronic lung disease, blindness and hearing loss.” Shantel P. feels that “people forget that when babies are born early, that their milestones take that much longer to achieve.” She felt that she was, “constantly explaining that her 6-month-old should really only be a 3-month-old.” Dr. Tanya Cahill, medical director, NICU Follow-Up Clinic at Cincinnati Children’s Hospital Medial Center, says, “The degree of complications a preemie faces depends on how early the baby is born. Babies born at 23 – 24 weeks will spend an extended period of stay in the NICU.” There are both short-term and long-term issues that can occur. Many common issues include: anemia; apnea; chronic lung disease; infections; intraventricular hemorrhage (IVH); jaundice; necrotizing enterocolitis (NEC), an intestinal problem; patent ductus arteriosus (PDA); respiratory distress syndrome (RDS); as well as an immature immune system.
Having a Preemie:
Having a preemie is a difficult and stressful experience for parents; therefore, many NICUs try to make the stay as comfortable as possible.
Marie Wise, University of Cincinnati Medical Center (UCMC) NICU Nurse Manager, shared that at UCMC, family is at the center of the care. As soon as a baby enters the NICU, there are case managers and social workers that follow parents during their baby’s hospital stay to provide support and answer questions. The case manager and social worker also work closely with the March of Dimes Family specialist.
NICUs offer a variety of classes to educate parents of preemies. Occupational and physical therapists work on educating parents on feeding and positioning. Lactation consultants are available for moms that are breastfeeding. Mueller offers a variety of classes at UCMC. Some of the classes include information on caring for your baby while in the NICU, kangaroo care, advocating for your baby, keeping germs away, discharge prep, safe sleep for your baby, car seat safety, and developmental milestones. She encourages parents to speak up and participate in changing your baby’s diaper, taking their temperature and participating in your baby’s care.
Most preemies can go home when they are: 1) able to maintain a stable body temp in an open crib; 2) breath on their own; 3) outgrow apnea and bradycardia; 4) complete breast or bottle feeding; 5) take in enough calories to gain weight; and 6) can sit in a car seat and maintain normal breathing and heartrate. Most babies go home around their natural due date and Cahill shared that getting them to the developmental skills needed for discharge can be challenging.
Going home may be difficult. Some babies may still need breathing support, feeding support, or apnea machines. Before being discharged, it’s recommended that parents take a CPR class and line up clothing as newborn clothing may be too large. Parents should choose a health care provider for when their baby is discharged and learn as much as possible from your baby’s NICU care team. Ask for the contact information for the lactation consultant, who to call in an emergency, and for a copy of the discharge summary. This report has valuable information that you can share with future health care providers. Talk with your case manager about setting up in home nurse care if your baby needs additional support. Parents should also obtain the contact information for Ohio’s Help Me Grow or Kentucky’s First Steps in case your baby may qualify for services.
Cahill advises parents to “be careful where you go or what you do, reduce large crowds, be careful and set boundaries.” She emphasized the importance of protecting preemies from infection, as an illness that may be mild for most babies can be severe for babies that were born premature. If there is someone in the house that is ill, limit his or her contact with your baby. Premature babies are more at risk for a severe reaction to catching a cold, and wheezing while breathing may lead to a hospital stay. Anyone that does hold or care for your baby should wash his/her hands with soap and water.
Special Considerations That Help Parents
- You are your child’s #1 advocate!
- Be there when the doctor does rounds — speak up, ask questions, voice concerns.
- Provide Kangaroo Care, hold hands, and read to your baby.
- Care for your baby while in the NICU.
- Trust your instincts! You know your baby better than anyone.
- Build relationships with your baby’s caregivers.
- Learn NICU language and best practices.
- Create a comforting environment.
- Reach out to other NICU families – The March of Dimes has a group called Friends of Tiny Hearts.
When to Seek Medical Support
Call your pediatrician or healthcare provider if your baby:
- Is having trouble breathing or has noisy breathing
- Has a temperature slightly above the normal range — 101°F-rectal or 99.5°F-armpit
- Has a temperature below 97.5°F
- Has difficulty waking for feedings
- Is not interested in feeding or is feeding poorly
- Has fewer than six wet diapers per day
- Is unusually irritable or crying inconsolably
- Is listless and tired
- Is vomiting or has diarrhea
- If you observe a color change, go to the ER immediately