Tuesday, December 4, 2012

Parenting Preemies

by Dr. Hillary

Babies born before 37 weeks of gestation are considered premature. Their complex medical problems originating in the first days of life may require care for months or years. Some common medical problems that preemies face are anemia, jaundice, breathing problems, visual problems, acid reflux, cerebral palsy, and developmental disabilities.

When a premature infant is born, parents might face mixed emotions of love, disbelief, and fear. They notice right away how small their baby is, and how different she/he looks in comparison to full-term infants. The preemie might need to spend some time in the neonatal intensive care unit to stabilize certain medical problems before being able to go home. At discharge, parents might be fearful that they might not be able to take care of their special needs child.

Welcoming a premature baby to the world is full of joy and pain. This touching article by Genny Heikka describes the challenges of parenting a preemie.
Moms Share the Heartbreak, Hope and Joy of Parenting PreemiesBy Genny Heikka

Twenty-one weeks pregnant with twins, Marlo Guillot of California went to her scheduled ultrasound appointment eager to find out if she was having 2 girls, 2 boys, or one of each. She remembers how the doctor came into the room, a serious look on his face. She and her husband Curt suddenly felt their excitement turn to fear. Marlo was admitted that day to Sutter Memorial Hospital in Sacramento and was put on bed rest, due to a shortened cervix and early contractions, for the remainder of her pregnancy.

Marlo was determined to do whatever it took to keep her babies healthy. Still, at week 25 one of her twins’ amniotic sacs ruptured, and she delivered her daughter, Ella, prematurely. Ella passed away that same day from a serious infection. Four days later, in the midst of trying to cope with their loss, Marlo and Curt delivered their son, Gabriel. Baby Gabriel was rushed to the neonatal intensive care unit (NICU), and given a 5% chance to live.

At 1 pound, 10 ounces, Gabriel was so tiny that his entire head fit in Marlo’s palm. She recalls how his hands were the size of just half of her thumb and how Curt’s wedding ring could slide all the way up his little arms. After being on a ventilator for three months, undergoing multiple surgeries, battling pneumonia, and beating the incredible odds stacked against him, Gabriel finally got to go home. He was 4½ months old, and weighed 6 pounds, 3 ounces.

Marlo’s story, though heart-wrenching, is not uncommon. According to the March of Dimes, one out of every eight babies (more than 520,000) is born prematurely each year in the United States. Delivering a baby preterm—before 37 weeks gestation—can be a shock, even for women who know they have a high-risk pregnancy and may be preparing for an early delivery. Those frightening first days and months can be stressful for preemie parents, yet for families like the Guillots, who triumph over the odds, the experience is also nothing short of miraculous.

Special Worries
Jennifer Harrison, of California as well, delivered her daughter Beth at 26 weeks. Beth weighed 1 pound, 15 ounces and spent three months in the NICU. “When you have a sick child, there’s nothing more important than what you’re dealing with,” says Jennifer, “especially through those early stages.” She encourages parents to draw fully from hospital resources. “Let the staff know that you want to be an active part of your child’s care,” she says. “Ask questions, and ask for help if you need it.”

For parents of preemies, bringing their baby home from the hospital involves more than adjusting to a schedule of feedings and changing diapers. “Your life changes drastically when you bring them home,” Jennifer says. After Beth came home from the NICU, she was put on special supplements and medications. “Everything is a threat,” says Jennifer. “You wash your hands a lot and make sure everyone takes their shoes off before coming into the house.”

For that first year, the Guillots were glued by Gabriel’s side, leaving the house as little as possible to keep him from being exposed to anything that might have threatened his health. “Small things can become big things for those little guys,” Marlo says. “A cold to someone else could be a respiratory issue for Gabriel.” Gabriel received extra vaccinations, and he was put on a sleep apnea monitor for about five months.

Jennifer recommends parents reach out for help in order to make this stage easier: “Acknowledge that what you are going through is substantial, and if you need help, get it… That was one of the most difficult times for me because of the emotional adjustment of dealing with what I came through.” This may mean asking friends or family for assistance or it may mean getting involved in a local support group. Jennifer belongs to a group of parents on Yahoo! who blog about their preemies.

Special Care
According to the March of Dimes, babies born prematurely are not only at an increased risk for newborn health complications, they are also at an increased risk for lasting disabilities such as cerebral palsy, lung and gastrointestinal problems, mental retardation, and vision and hearing loss. Recent studies also indicate that children born very prematurely may face an increased risk of autism. Babies born before 32 weeks are at the highest risk for complications because their organs are less developed.

“Often the simple fact of being bigger makes things easier for the babies,” says Dr. Diane Chan, MD, a pediatrician at Kaiser Permanente in Roseville, California. “For example, it's physically easier for a 4-pound baby to suck from a bottle than a 2-pound baby because a larger baby generally has better motor strength and muscle coordination. So, depending on weight, we will often fortify formula or breast milk to provide premature babies with more calories.”

Kangaroo Care—holding a baby skin-to-skin on the chest—is another intervention of special benefit to premature infants. Kathy Foley, Occupational Therapist and Neonatal Developmental Specialist at Mercy San Juan in Sacramento, California, describes it as “a sensory diet for the developing brain and candy for the soul.” It’s also relaxing for moms and dads, and often brings about a deep sleep for the baby, which encourages brain development. Kangaroo Care facilitates bonding and attachment, and it can encourage breast-feeding, according to La Leche League International.

Breast milk is especially beneficial to preemies because it is easier on their immature digestive tracts. The milk produced by moms of preemies is also naturally richer in protein and nutrients than that produced by moms of full-term babies. Though breast-feeding a preemie can be challenging and each baby may face different issues, there are resources and tools that can help. La Leche League International offers breast-feeding counseling by phone (1-877-4LA-LECHE), as well as an online resource page.

Special Joy
Advances in neonatology and obstetrics have dramatically increased these tiny babies’ chances for survival. “While it's a fantastically stressful and physically tolling journey for the parents and families of preemies, technology and our medical knowledge have come a long way,” says Dr. Chan.

Today’s preemie parents are also faring better, with more answers and better resources available. “There is help, guidance, and support the whole way,” says Dr. Chan. The March of Dimes provides information and various forms of support through local chapters and online resources.

Reflecting on the difficult journey she’s been through and what it’s meant to be a preemie mom, Jennifer says, “Life is just richer. When little things happen, like your daughter is screaming because she can’t get her brown shoe on the right foot, you just think back to when she weighed one pound, and you look past it.”

Marlo says that time also helps. Her son Gabriel has experienced respiratory complications since he was born, but with each year that passes, he gets better and better. She encourages parents of preemies to also remember that they are not alone. “There are people who have been through what you are going through and that know your pain,” she says, adding, “Gabriel was given a five percent chance to live, and he’s here. No matter what you might be prepared for, you’ve got to have faith and hope.”

**First published in Sacramento Parent Magazine.
Genny Heikka lives in California with her husband and two kids, where she balances motherhood with writing, and loves both. Her work can be found in magazines and on various Websites, as well as on her blog,MyCup2Yours.com. She’s also the Assistant Regional Advisor for the Society of Children’s Book Writers and Illustrators in North/Central California, and three of her manuscripts have received awards.

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