Takeila Hannah delivered her son, William, at 24 weeks gestation over eight years ago. She went into labor at 20 weeks and was told that there was no hope for survival. But against all odds, four weeks later her hopes were restored when she delivered William. After his birth, William faced a mountain of medical issues that changed Takeila’s life in ways she did not expect. Listen to her story of advocating for her son through managing his treatment and care during and after his 120-day NICU stay.
As parents of preemies, you may have huge amounts of medical information presented to you. Although much of the information you receive will be specific to your child, this page highlights information that every preemie parent should know.
FEATURED MEDICAL INFO:
AN IMPORTANT FIRST STEP IN PREEMIE CARE AT HOME
Establishing a Family Centered Medical Home
The Family Centered Medical Home (FCMH) is a pediatrician or clinic that coordinates the care of a sick baby by being the place where all of the baby’s specialist visits are scheduled and where all of his/her medical results are sent. This clinic or provider becomes the contact person for the baby’s family, and any other health care providers for information about the baby’s health.
Establishing a FCMH promotes parent-physician collaboration in providing the best possible care for your baby through opening the lines of communication during the care coordination and medical information sharing process. This coordinated effort led by parents and their FCMH encourages the sharing of medical information between specialists, while increasing your primary care provider’s ability to track progress and treatments. Being informed allows your provider to make sure that all of your baby’s health and health care needs are being met. The information sharing helps reduce the need for repeating the same testing for different specialists. When a medical test is completed and the results are sent to the baby’s FCMH, it becomes available for any other specialist who needs the test conducted as well.
One of the first steps parents can take to care for their preemie is to establish a FCMH. You can start by deciding which clinic or practitioner will be the best choice for managing your preemie’s care after s/he leaves the NICU. Understanding the needs and health concerns of your baby will help with choosing the clinic or provider. Once you’ve made your decision, contact your provider to make your first appointment and to begin coordinating your baby’s care as soon as s/he is released from the hospital.
To find out more, visit the National Center for Medical Home Implementation website.
INFORMATION FOR PARENTS:
Other Website Resources
Visit our Resources page for links to other websites that provide medical information about health issues preemie moms and babies face as well as websites that provide general information about prematurity and financial information that can help with paying for your preemie’s hospital care.
Preemie care: What to expect
Caring for your preemie in the NICU will include monitoring his/her heart rate, breathing rate, and blood oxygen level. Be prepared to see your little one connected with leads (little stickers with sensors imbedded) to a monitor that is bigger than s/he is! The feeding tube, IV, leads, and blood oxygen monitor (a little sensor with a red light that is taped to one foot) may all seem intimidating at first, but many preemie parents find comfort in the constant beeping and whirring of these machines. They help you tell at a glance how things are going.
Preemie care can range greatly from baby to baby and can include focused attention on the baby’s basic abilities to breathe, regulate temperature, and feed. It may include added measures like treating jaundice, providing skin care, medication, or surgery. There may also be a medical condition or multiple conditions that require care and treatment. The medical terms and their meanings can be intimidating at first, but understanding what is going on can relieve the stress of uncertainty and provide knowledge about how to improve your ability to parent.
Preterm delivery can be connected to health issues for mom as well as baby. When maternal health is an issue, it is important to focus on getting mom healthy in order to improve the health of her baby. Studies have shown that moms who are able to have skin-to-skin contact with their newborn, called Kangaroo Care, receive health benefits that can promote healing for mom AND baby.