Resources
Helping families navigate the journey of prematurity
Learn, grow, share: it’s all about educating and supporting premature infants and their families. Here are some resources that offer you the information you need to make informed decisions about your preemie’s treatment and care. All are available to download by clicking on the following:
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The impact of preterm birth impacts the family for a lifetime, by Maureen Boyle
Like every parent of a preemie I never planned or expected to be one. Lots of pregnancies are planned, which is a REALLY good thing, but none with the hope or intention of an NICU (Neonatal Intensive Care Unit) experience. This seems like a pretty obvious thing to say but you may be surprised how many people lose sight of this. Once pregnant, some women find out that they are in a high risk pregnancy and then are given the opportunity (if you want to call it that) to prepare, as best as anyone can, for a possible early delivery. Many other couples are blindsided by an abrupt end to a somewhat typical pregnancy experience. To read the full article, click here.
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Preemie Podcast
Carolyn TenEyck, RN Director of Advocacy, speaks on Capitol Hill with the National Black Nurses Association on health care reform and its impact on premature infants. View the full agenda of Capitol Hill Day activities.
Click here to listen to the podcast. 
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Helpful websites to navigate the prematurity journey:
- The Academy of Neonatal Nursing
- The mission of the Academy is to provide quality neonatal education and programs at a reasonable cost to all health care professionals.
- American Academy of Pediatrics
- Dedicated to the health of all children
- Assosciation of Women's Health, Obstetric and Neonatal Nurses
- Promoting the health of women and newborns
- Back to Sleep
- Aims to promote the health and safety of infants in child care settings by providing education and outreach to child care providers regarding safe sleep recommendations
- Caring Bridge
- Connecting family and friends when health matters most
- Cystic Fibrosis Foundation
- About cystic fibrosis, from the Cystic Fibrosis Foundation
- Family Voices
- Keeping families at the center of children's health care for all children and youth with special health care needs or disabilities
- Graham’s Foundation
- Graham’s Foundation is a non-profit organization founded in 2009 by Jennifer and Nick Hall in memory of their son, Graham. Its mission is to offer both practical and emotional support to parents of micro-preemie babies. The foundation supports the parents by sending care packages to them during their journey in the NICU, and the foundation’s website provides a place for parents to share their stories and find support.
- Hand to Hold
- Hand to Hold provides comprehensive resources and support to parents of preemies, babies born with special health care needs and those who have experienced a loss due to these or other complications.
- Healthy Mothers, Healthy Babies Coalition
- Improving the quality and reach of public and professional education related to prenatal and infant care
- Holding Tiny Hands Foundation
- The Holding Tiny Hands Foundation is organized around the mission of providing a continuum of support to parents during their time in the NICU, throughout discharge and beyond. The goal is to improve the outcomes of premature and/or chronically ill infants by providing information about and access to community resources that assist parents with the development and care of their premature baby.
- Infant Massage USA
- Infant Massage USA promotes nurturing touch through training, education, and research so that babies, parents, and caregivers are loved, valued, and respected throughout the world community.
- Institute for Family-Centered Care
- Providing leadership to advance the understanding and practice of patient- and family-centered care in hospitals and other health care settings
- March of Dimes
- The mission of the March of Dimes is to prevent birth defects, premature birth and infant mortality. My personal mission is to support parents who leave the NICU with medically fragile children and support them with the on-going challenges and special needs they may encounter.
- Maternal and Child Health Bureau
- Improving the health of mothers, children and their families
- Micro Mom Blog
- Preemie Blog Moms is an online support group for mothers of Micro Preemies. We wanted to draw special attention to Micro Preemies and the medical issues they face. Initially, the group was started for mothers who blog about their micro preemie story, but while many of our members do blog, it is not a requirement.
- MOST (Mothers of Supertwins)
- Is a community of families, volunteers and professionals founded in 1987, is the leading national nonprofit provider of support, education and research on higher-order multiple births. MOST's mission is to advocate for quality prenatal care, promote healthy deliveries, and supply information to all multiple birth families in order to support successful parenting through every phase of their children's development. Supporting Multiple Birth Families...Every Step of the Way.
- National Association of Neonatal Nurses
- The advocate and leading change agent for the neonatal nursing profession to optimize care for neonates and their families
- National Association of Perinatal Social Workers
- A community of perinatal social workers sharing a knowledge base and striving for excellence in practice for the benefit of families around the time of birth
- National Perinatal Association
- Dedicated to the promotion of health care and public policy which ensures the optimal health and long-term development for mothers, infants and children
- National Rural Health Association
- Improving the health of 62 million rural Americans
- Newborn Individualized Developmental Care and Assessment Program Federation International
- Changing the future for infants in intensive care
- Nurse-Family Partnership
- A national non-profit and public health program that serves first-time, low-income mothers with nurse home visits. Nurse-Family Partnership is the leading evidence-based program of its kind with proven results in improved pregnancy outcomes, improved child health and development, and increased economic self-sufficiency.
- Parent Resource Network, Inc
- Is a nonprofit organization that provides outreach services to families that have children born prematurely, with chronic illness and/or congenital disorders. We reach beyond our borders of Pittsburgh, and provide a toll free line service internationally for families to speak to another person that has experienced the NICU. Callers can receive resources from their local area, talk with someone that understands a similar experience and get excellent tips about how to support a family that is going through the experience of having a child born prematurely, with chronic illness and/or congenital disorders. We also have a hospital outreach program for each of the area NICUs, Helping Hands program and bereavement services.
- Parent-to-Parent (Salt Lake City, UT)
- Parent-to-Parent is a support group that provides support and information to families experiencing a high risk or threatened pregnancy, or who have a critically ill newborn in the Newborn Intensive Care Unit (NICU).
- PreemieCare
- The mission of PreemieCare is to educate, support and offer additional resources for families of babies born preterm and preemie support group leaders.
- Preemie Parenting
- For parents and loved ones of premature infants and women experiencing a high risk or complicated pregnancy
- Preemies Today
- National preemie families support network
- PreemieWorld
- Our mission at PreemieWorld is to provide parents, families and other caregivers with publications, information and products that help them navigate the NICU stay, discharge and post-NICU years moving forward. We also serve to educate the NICU and post-NICU professionals so that they may better help the community.
- Prematurity.org
- Supporting preemie parents by providing information on prematurity and preemie care
- Share Your Story
- An online community for NICU families
- Vaccine info
- About vaccines and immunizations
- Zero to Three
- A national nonprofit organization that informs, trains and supports professionals, policymakers and parents in their efforts to improve the lives of infants and toddlers.
- Zoe’s New Beginnings
- Zoe’s New Beginnings provides gift baskets full of essential needs for parents of preemies after they leave the hospital. The basket has preemie sized diapers, two outfits, hand sanitizer, educational information about how to keep the baby healthy and one novelty item.
- Zoe Rose Memorial Foundation
- The Zoe Rose Memorial Foundation was formed in 2008 after the death of one of our 25 weeker triplet daughters. Our purpose is to offer help, support, and one-on-one parent support for families experiencing a high risk pregnancy through their NICU stay and continuing the support through the transition home and throughout childhood. We also offer bereavement support through an annual candle lighting remembrance in honor of Pregnancy and Infant Loss Awareness.
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Understand the top five reasons for hospitalization
Click the reasons listed below to learn more about each.
- Jaundice
Jaundice (JAWN-diss) is a yellowish color of the skin, the mucous membranes, or the eyes due to an excess of bilirubin in the blood. Bilirubin is a by-product of the normal breakdown of old red blood cells. Jaundice is due to the immaturity of the baby’s liver,which leads to a slow removal of bilirubin. Though mild jaundice is common in the first week of life, extreme or ongoing jaundice may be a sign of toxic build-up of bilirubin,which can damage the brain.
Prevention:
- Feed babies often and do not let them become dehydrated.
- Watch for discoloration, such as yellow to orange skin tones that continue or become more extreme. Seek advice from your healthcare professional if you have concerns.
- Dehydration
Dehydration (dee-hahy-DREY-shuhn) means your baby’s body does not contain as much fluid as it should. Dehydration is most commonly caused by ongoing vomiting and diarrhea. Infants and children are more vulnerable to dehydration than adults due to their smaller body weight and because they process water and electrolytes more quickly than larger people do.
Symptoms in your baby may include:
- Low or no urine output; urine appears dark yellow
- Not producing tears
- Sunken/hollow eyes
- Dry mouth and skin
- Markedly sunken fontanelle (the soft spot on the top of an infant’s head)
- Sleepiness or irritability
Prevention:
- Pay close attention when your baby is vomiting or has diarrhea and offer fluids — DO NOT wait for signs of dehydration.
- RSV
Respiratory syncytial virus (RSV) (RESS-per-uh-tawr-ee sin-SYSH-ulVAHY-ruhs) is a common virus that generally causes moderate to severe, cold-like symptoms in most babies, older kids and adults. But it can cause serious respiratory infections, such as bronchiolitis or pneumonia, in babies born early (less than 37 weeks).RSV season usually starts in the fall and runs through the spring, but it can be different in certain parts of the country.
Severe symptoms in your baby (reasons to call your doctor) may include:
- Troubled or rapid breathing
- Fever. A rectal temperature greater than 100.4°F (38°C) in infants under 3 months of age is cause for concern.
- Gasping for breath
- Coughing or wheezing
- Flared (spread out) nostrils and/or caved-in chest when trying to breathe
- Bluish lips or fingertips
Prevention: There are some simple ways to help prevent RSV infection in babies.
- Wash your hands before touching your child and make sure others wash their hands, too.
- Clean your baby’s toys, clothes, bedding, crib rails and any other surfaces he or she might touch.
- Avoid exposing your baby to crowds.
- Keep your baby away from anyone with a cold or fever.
- Try to keep young children away from your baby. RSV disease is very common among young children and the virus easily spreads from child to child.
- Do not smoke anywhere near your baby. Exposure to tobacco smoke increases the risk of severe RSV illness.
- Speak to your healthcare provider about other options available to help prevent RSV disease.
- Bronchiolitis
Bronchiolitis (brong-kee-oh-LI-tis) is an inflammation of the small passages in the lungs usually caused by a viral infection. It begins as a mild cold, but over a period of 2 to 3 days,may develop into a serious lung infection.
Symptoms in your baby may include:
- Bluish color, due to lack of oxygen
- A “tight” wheezy cough, shortness of breath, or difficulty breathing
- Increased breathing rate with flared nostrils and/or caved-in chest
- Fever. In infants under 3 months of age, a rectal temperature greater than 100.4°F (38°C) is cause for concern.
Prevention: Bronchiolitis is not easy to prevent because the viruses that cause it (RSV is one of them) are common in our environment. However, careful attention to hand washing can help prevent the spread of viruses that cause bronchiolitis.
- Pneumonia
Pneumonia (noo-MOHN-yuh) is an infection of the lungs.Many different germs cause it, including bacteria as well as viruses like RSV and influenza. Pneumonia can range from mild to severe and can be very serious.
Symptoms in your baby may include:
- Cough with greenish, yellow, or bloody mucus
- Fever with shaking chills. In infants under 3 months of age, a rectal temperature greater than 100.4°F (38°C) is cause for concern.
- Rapid, shallow breathing, or shortness of breath
- Exhaustion
Prevention:
- Wash your hands frequently, especially after blowing your nose, before you touch your baby.
- Vaccines can help prevent certain types of pneumonia in children. Speak to your healthcare provider about what is right for your baby.
View full information of top 5 reasons
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