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Preemies forge their own path from birth, defying typical developmental patterns and demonstrating unique resilience that begins in the NICU and continues long after. < Back What is Considered Premature and How do Preemies Differ? Preemies forge their own path from birth, defying typical developmental patterns and demonstrating unique resilience that begins in the NICU and continues long after. Listen To The Article A preemie, or premature baby, is one born before 37 weeks of pregnancy . Because they arrive before their bodies and organs are fully developed, preemies often face unique challenges in the first weeks or months of life. From the way they look and move to how they breathe, eat, and respond to the world, preemies develop on a different timeline than full-term babies. These differences can be subtle or striking, but they don’t define a child’s potential, they simply mean the journey begins in a different place. Preemies forge their own path from birth, defying typical developmental patterns and demonstrating a resilience that begins in the NICU and continues long after. Babies born prematurely commonly have: less muscle tone shorter periods of alertness low birth weights greater difficulty tracking objects and people poorer reflexes thinner skin poorer stress response digestion issues breathing difficulties problems regulating temperature feeding difficulties jaundice Some babies, especially those born very early, will also have physical issues that make them seem very different from other newborns. For instance, many still have fused eyelids, ears that lack cartilage (so fold easily), and no obvious nipples. Their skin can be red and raw and tear like wet paper. Inside, their hearts and blood vessels and intestines may be prone to problems. The primary goal of NICU care is to help preemies grow strong enough so they can be discharged from the NICU. But a parallel goal is giving these babies the tools they need to catch up to their full-term counterparts in as many areas as possible, which is why hospitals employ feeding specialists and occupational therapists. Here are some of the issues that tend to stick around: Digestion Eating is hard when you’re an early bird. Preemies born before 34 weeks typically can’t coordinate sucking, swallowing, and breathing very well and may need nutritional support from a nasogastric feeding tube. Earlier preemies who don’t thrive on mouth feedings will sometimes require a g-tube before they can go home. Of course, some full-term infants also need these things but it’s much more common for preemies to require supplemental nutrition to grow. Breathing Breathing doesn’t come easy for preemies! Nearly all preemies are at risk for respiratory issues, both in the NICU and then even later in life. Supplemental oxygen is common in the NICU. The smallest and earliest preemies may have severe respiratory developmental issues that necessitate artificial ventilation. However, even the sickest preemies get stronger and many leave the hospital breathing “room air”, though others need breathing assistance for months or even years after discharge. Motor Skills Preemies can teach us patience. They often (but not always) meet physical developmental milestones later than termies, even when you adjust for due dates. There’s no one reason for this. Muscles take time to develop. Babies in the NICU have fewer opportunities for exercise. Preemie brains aren’t necessarily ready. Many preemies need Early Intervention services to help them overcome some of these issues but most do catch up. Neurology The last few months of pregnancy aren’t just about putting on pounds. A study published in the journal Pediatrics found that babies experience a lot of brain growth during the third trimester and in particular during the last month of pregnancy. That means that preemie brains are literally different from their full term peers – at least at birth. “What this study shows us is that every day and every week of in utero development is critical,” said Catherine Limperopoulos, senior author of the study and director of the Developing Brain Research Laboratory at Children’s National Health System in Washington, D.C., in a statement . Cognitive Development Because preemies’ brain development is interrupted by premature birth, there may be lasting changes. It’s unknown whether brain development happening outside of the womb is the same as brain development happening inside the womb. And the most fragile preemies are more likely to experience issues like brain hemorrhaging that can (but doesn’t always) lead to cognitive delays. There’s a lot we still don’t know about how preemies are unique! Results of one recent study suggested that preemies have fewer friends than their full-term peers but another study (one that showed that preterm babies are more affected by the quality of a care-giving environment) found that prematurely born children had better social abilities than their full-term peers when they were cared for in households with happy, nurturing parents. What does that mean for your preemie? Probably not much since your preemie is an individual who will forge their own path. Preemies and termies are clearly very different, but never forget that your preemie – however many challenges they’re facing – is also a baby worth celebrating. There’s no way to predict how far they’ll go in the next year or in a lifetime. The best thing you can do is give your baby every opportunity to explore their potential and love them as much as you can! Previous Next Send Comfort When It Matters Most Quick View Complimentary Preemie Parent Care Package Price $0.00 Quick View Premium Preemie Parent Care Package Price $25.00 Quick View Complimentary Loss and Remembrance Care Package Price $0.00 Quick View Complimentary (Digital) Preemie Parent Care Package - English Price $0.00 Quick View Complimentary (Digital) Preemie Parent Care Package - Spanish Price $0.00 Quick View Complimentary (Digital) Preemie Journal Price $0.00 Discover More Guidance, Comfort, and Care 18 Things You Might Not Know About Premature Birth 8 Thoughtful Things to Say (and Do) for Parents of a Premature Baby Adjusting To Your New Reality Early Intervention 101

The NICU journey can feel overwhelming – a whirlwind of medical terms, sleepless nights, constant worry, and emotional upheaval. < Back Self Care Tips for NICU Parents The NICU journey can feel overwhelming – a whirlwind of medical terms, sleepless nights, constant worry, and emotional upheaval. Listen To The Article All of this can pile on quickly, if not all at once, and it is important to take a step back whenever a small moment arises to care for yourself. These moments may be few, between all of the doctors, nurses, respiratory specialists, scans, and bloodwork rotations. But every now and then the stars align and you will find maybe five minutes or even two hours of actual time to yourself. How you choose to use this time could be key to surviving the roller coaster that is life in the NICU. Here are some helpful tips of self care for parents in the NICU: Step away from social media platforms. It is easy to get lost in the mindless scrolling of negative news, NICU pages, statistics and more. Frankly it can start to be quite overwhelming. While it is important to learn and relate with other parents that can offer advice, it is just as important to give yourself the downtime you need. Listen to music, read a book or even a trashy magazine, invest in a good adult coloring book to give yourself the mental break that takes your mind away from your surroundings of alarms, medical terminology and numbers. Eat something healthy. It is no secret that ironically hospitals are not surrounded by healthy food options. Not to mention, when you are stressed and exhausted fast food can be a satisfying go to. Your baby needs you to be healthy too. Eating something lighter may be what you need for a little more brain power. Find a place that has a good salad. If there’s nothing close by, look into a food delivery service in your area. Many will deliver to the NICU door or to hospital floors. If you have a Ronald McDonald house close to your NICU try attending the free lunches or dinners provided by other parents every so often. This allows for a healthier option and it’s a good social opportunity to meet other parents in the NICU. This can be especially useful in getting information on doctors in your hospital. Write everything down. Get yourself a nice journal and start documenting each days events. Writing can be therapeutic and can help you clear your mind of the days events. This is not only a good way to keep track of changes in your babies statistics but also a great way to track progress and memories. As a NICU parent you don’t have the luxury of capturing the standard milestones parents get to capture in baby books. Create your own with a journal. Every little victory is worth celebrating. You can return to your NICU journal to remember how big the little victories/milestones are: each one getting you closer to graduation. Talk to someone. When you are in the NICU all of your conversations revolve around your child, their medical status, and other medically related topics. You may find this especially true in all conversations with your significant other and close family. It’s hard to consider even discussing anything else because the NICU is an all consuming experience. Make a point to change the conversation. Ask how they are doing. If one of you was able to get away for a bit or go to work that day then talk about their events outside of the NICU. Call a friend and check in. Focusing your energy away from the NICU can make all the difference and get you mentally back to a better place which can better prepare you to handle the next obstacle that may come your way. Breathe. Find a quiet place in or out of the NICU to just sit and breathe. Many hospitals have garden areas that are often empty and under used. Get a quick five minutes of fresh air and sunlight on a bench, close your eyes and take a deep breath or two or three. If you meditate, do some breathing exercises. Whatever your de-stress method may be, lose yourself for a moment and allow yourself to let go and maybe even relax for just a moment. Most of all remember you are not alone, you are stronger than you think, and you got this. These may seem like minor and practical steps and there are many more things we can all do to ensure we care for ourselves in the toughest of times. The most important thing is to listen to your body and know when it’s time to take care of yourself. You are not just your baby’s advocate, you are your advocate and you need to be at your best to care for your baby. These small moments can be the game changer in helping you overcome the unknowns that the NICU can bring over the next few days, weeks or months. Other Articles: Coping with stress in the NICU > When a friend’s baby is in the NICU: 10 Things You Can Do to Help > Hints & Tips from other Parents > Tips for NICU Parents > Empowering NICU Parents: Strategies for Self-Care > How to Prepare for a Long Stay in the NICU > Tips: Coping with the NICU > Previous Next Send Comfort When It Matters Most Quick View Complimentary Preemie Parent Care Package Price $0.00 Quick View Premium Preemie Parent Care Package Price $25.00 Quick View Complimentary Loss and Remembrance Care Package Price $0.00 Quick View Complimentary (Digital) Preemie Parent Care Package - English Price $0.00 Quick View Complimentary (Digital) Preemie Parent Care Package - Spanish Price $0.00 Quick View Complimentary (Digital) Preemie Journal Price $0.00 Discover More Guidance, Comfort, and Care 18 Things You Might Not Know About Premature Birth 8 Thoughtful Things to Say (and Do) for Parents of a Premature Baby Adjusting To Your New Reality Early Intervention 101

Adjusting to life with a new baby is challenging, but life after premature birth can be even harder, especially with a preemie in the NICU. < Back Adjusting To Your New Reality Adjusting to life with a new baby is challenging, but life after premature birth can be even harder, especially with a preemie in the NICU. Listen To The Article You may not realize how much premature birth will impact your life at first because your preemie is new to the NICU. Once you’re discharged, you’ll be spending a lot of time (and energy) going back and forth to the hospital while still recovering from the delivery, and the days can pass you by in a total blur. If your preemie was very early or has significant health issues, you’ll probably be totally focused on them. Bottom line: It’s hard to think about yourself at all when your preemie is new to the world and struggling. Eventually, though, the NICU becomes more familiar and life after premature birth becomes your new normal. As feelings of fear subside, feelings of grief and anger can emerge. All the stress you weren’t giving yourself space to feel hits you like a wall and suddenly you’re anxious, depressed, and unbelievably tired. Maybe you’ve burned through the parental leave you had available and you need to go back to work. Or you have older children at home. Finding a balance between being there for your preemie and being on top of your responsibilities can seem impossible. Caring for yourself? Who has time for that! Many people decide that seeking help from a counselor or a therapist is helpful after premature birth since there are so many feelings to unpack (and so little mental space to do it in). Premature birth is traumatic in so many ways, and if you’re mired in guilt or anxiety or coping with PTSD it’s a lot harder to adjust to life with a preemie in the NICU or at home. Your emotions following premature birth may be unpredictable and you may experience lots of ups and downs. Letting yourself feel whatever you’re feeling is okay, even your emotions are different from what the people around you expect you to be feeling. Talking about your feelings (with a therapist, a social worker, a good friend, or a preemie parent mentor) gives you a safe outlet for them and may make it easier to focus on your day to day life. Feelings, when shared, have a tendency to become less overwhelming. The truth is that adjusting to life after premature birth is a matter of time passing versus doing this or that. A lot of resources will tell you that it’s easier to adjust to life after premature birth if you are getting enough sleep, eating healthy foods, taking breaks, and carving out time to spend with family and friends – and that might be true. But most of us know from experience that when you’ve had a preemie, you’re inexorably driven to devote your time and energy to that precious baby. No one should make you feel guilty for putting your preemie’s needs first if that’s what feels right. As for when you’ll feel normal again after premature birth, the answer will be unique to you. At some point you’ll probably realize that you feel less stressed and more capable, but this can take a long time if your preemie’s early life is full of ongoing challenges or you aren’t getting plenty of support. It’s important to be realistic about this adjustment because it’s a BIG one. You may find that you have a well of strength and resilience you’ve never tapped before. Or you may discover that parenting a preemie takes you to the very edge of your courage. Self care may seem like a laughable indulgence at this point in your life, so practice self awareness instead. Keep an eye on your emotions – if your feelings are unmanageable or you feel like you may harm yourself or someone else, seek help. If your feelings change abruptly or you’re not feeling any emotions at all, seek help. “This too, shall pass” And make ‘this, too, shall pass’ your mantra because it’s true. Someday the NICU days will be a distant memory and you will have survived them, adjusting to new reality after new reality as part of your larger parenting journey. Previous Next Send Comfort When It Matters Most Quick View Complimentary Preemie Parent Care Package Price $0.00 Quick View Premium Preemie Parent Care Package Price $25.00 Quick View Complimentary Loss and Remembrance Care Package Price $0.00 Quick View Complimentary (Digital) Preemie Parent Care Package - English Price $0.00 Quick View Complimentary (Digital) Preemie Parent Care Package - Spanish Price $0.00 Quick View Complimentary (Digital) Preemie Journal Price $0.00 Discover More Guidance, Comfort, and Care 18 Things You Might Not Know About Premature Birth 8 Thoughtful Things to Say (and Do) for Parents of a Premature Baby Adjusting To Your New Reality Early Intervention 101

Discover surprising facts about premature birth to help you navigate this journey with insight and support. < Back 18 Things You Might Not Know About Premature Birth Discover surprising facts about premature birth to help you navigate this journey with insight and support. Listen To The Article For many moms, the first signs of premature labor are obvious contractions. But for some, premature labor began with nothing more than a general “off” feeling or minor flu-like symptoms. A preemie mom’s milk will have extra minerals, fat, and protein, along with leukocytes and antibodies to help protect their preemies from infection, however, the overwhelming amount of pressure, along with stress and fatigue, make it common for moms of premature babies to face challenges with milk production. Half of all neurological disabilities in children are related to preterm birth. The cause of most preterm birth is unknown, which makes it very difficult to prevent. Umbilical and inguinal hernias occur more often in preterm infants. Umbilical hernias are usually self-resolving but inguinal hernias require surgery to correct. Severe cases of neonatal hyperbilirubinemia (jaundice) can result in brain damage! Though it can seem a bit silly phototherapy is vital for preemies with severe cases. Patent ductus arteriosus (PDA) is a heart problem that’s relatively common in preterm infants. It may require surgery to repair the defect but in some cases it can be resolved with nothing more than a dose of ibuprofen. Research has found that moms who give birth within eighteen months of having a baby are much more likely to have a preemie. Albert Einstein, Mark Twain, Sir Winston Churchill, Victor Hugo, and Sir Isaac Newton were all preemies. Preemies are much more susceptible to infections than full-term babies because the transfer of maternal IgG antibodies to the fetus usually happens after the 28th week of pregnancy. Premature birth is the number one cause of neonatal mortality in the US. Race and gender can affect the outcomes of premature birth. Premature birth varies a lot. Preemies born 34-37 weeks are called late-term preemies and have fewer complications. Preemies born before 33 weeks are at risk for more conditions than late-term preemies. Preemies born before 25 weeks are called micropreemies and are at the greatest risk for serious health issues and long-term complications. Micropreemies are typically born with their eyelids still fused. Typically, they will open their eyes about six days after birth. Because fused eyelids are associated with earlier births, studies correlate fused eyelids and overall outcomes: 52% percent of babies born with their eyelids fused survived to be discharged from the hospital, compared to 83% of those born with eyelids open. Preemie skin may be very fragile, wrinkly, and red—especially in the earliest preemies. It’s also much more permeable than a full term baby’s skin, making them more vulnerable to infection and less able to regulate their temperature. A preemie’s development may be evaluated according to an “adjusted age,” which is their chronological age minus the difference between birth date and due date. The first line of treatment for incidents of apnea of prematurity (where breathing stops for more than 15 seconds) is often stimulation of the preemie’s skin by patting or rubbing—both of which can help a baby begin breathing again. Parents of preemies are at risk for developing depression, anxiety, and PTSD. But studies have shown that kangaroo care can reduce the chances mothers of preemies will develop postpartum depression or anxiety. There’s a lot we still don’t know about how preemies are unique! Results of one recent study suggested that preemies have fewer friends than their full-term peers but another study (one that showed that preterm babies are more affected by the quality of a care-giving environment) found that prematurely born children had better social abilities than their full-term peers when they were cared for in households with happy, nurturing parents. What does that mean for your preemie? Probably not much since your preemie is an individual who will forge their own path. Preemies and termies are clearly very different, but never forget that your preemie – however many challenges they’re facing – is also a baby worth celebrating. There’s no way to predict how far they’ll go in the next year or in a lifetime. The best thing you can do is give your baby every opportunity to explore their potential and love them as much as you can! Previous Next Send Comfort When It Matters Most Quick View Complimentary Preemie Parent Care Package Price $0.00 Quick View Premium Preemie Parent Care Package Price $25.00 Quick View Complimentary Loss and Remembrance Care Package Price $0.00 Quick View Complimentary (Digital) Preemie Parent Care Package - English Price $0.00 Quick View Complimentary (Digital) Preemie Parent Care Package - Spanish Price $0.00 Quick View Complimentary (Digital) Preemie Journal Price $0.00 Discover More Guidance, Comfort, and Care 18 Things You Might Not Know About Premature Birth 8 Thoughtful Things to Say (and Do) for Parents of a Premature Baby Adjusting To Your New Reality Early Intervention 101

While some parents can prepare for premature birth, most enter the NICU unexpectedly. Here are nine key insights to help you navigate the preemie experience. < Back What to Expect with a Premature Baby | NICU & Preemie Parent Guide While some parents can prepare for premature birth, most enter the NICU unexpectedly. Here are nine key insights to help you navigate the preemie experience. Listen To The Article What to Expect with a Premature Baby Most babies arrive between 37 and 42 weeks of pregnancy. A premature baby , or preemie, is born before 37 weeks. Thanks to advances in neonatal medicine, some micro preemies born as early as 22 to 23 weeks can survive with intensive care, though every additional week in the womb greatly increases survival rates and reduces complications. Babies born at 28 weeks often have a survival rate of over 90% in advanced NICUs, but they may still need weeks or months of specialized support. Nothing Can Fully Prepare You for Having a Premature Baby Even if you have been told your baby might arrive early, the reality of what to expect with a premature baby is something you can only truly understand once you are living it. The experience can be isolating, overwhelming, emotional, and sometimes terrifying, but also deeply rewarding. You will quickly get a crash course in medical terminology and NICU acronyms. It can feel overwhelming at first, and that is OK. The NICU is a Community All Its Own The neonatal intensive care unit (NICU) is more than just a hospital ward. It is a mini-community. Alongside neonatologists and nurses, you will meet respiratory specialists, occupational therapists, receptionists, lactation consultants, social workers, x-ray techs, and more. You will also see parents just like you, some there for a single night, others for months. The NICU is busy and often noisy, with beeps, alarms, and breathing machines sounding regularly. It may feel overwhelming at first, but in time, those sounds become background noise, each with a specific meaning the staff understands instantly. Premature Baby Appearance: What to Expect Depending on how early your preemie is, their appearance may be different from what you imagined: Eyes may be fused shut Skin can be very fragile, red, and wrinkled Fine unpigmented hair (lanugo) may cover the body Sex organs may not yet look fully developed Some micro preemies born extremely early may also have: Ears without fully formed cartilage (soft and folded) No visible nipples yet Skin so delicate it can tear like wet paper These differences are completely normal for premature babies at various stages of development. Over time, most physical characteristics begin to resemble those of full-term newborns. Holding and Bonding with Your Preemie You may not be able to hold your baby right away. Once you can, make the most of it and hold them as often as your preemie will allow. Skin-to-skin contact, also called kangaroo care, is powerful for bonding and for your baby’s development. Your touch, voice, and presence are more important than you may realize. Every Preemie’s Journey is Unique Not all preemies are the same, so avoid comparing your baby to someone else’s. Each preemie has their own set of challenges, setbacks, and victories, and they will reach milestones on their own schedule. Many parents describe NICU life as a rollercoaster. You will have days where nothing seems to change, and others where your baby struggles. Sometimes those highs and lows happen in the same hour. The best advice is to take a deep breath and remember that what is true in this moment could change quickly. Your Role in Caring for a Premature Baby You are the most important member of your baby’s medical team. Get involved in their care when you can: Change diapers Help with baths Feed your baby (bottle, breast, or through a feeding tube) Comfort them with your voice and touch These moments not only support bonding but also boost your baby’s growth and stability. Frequently Asked Questions About Premature Babies Q: How early can a baby be born and live? A: Some babies have survived being born as early as 22 weeks, though survival rates improve greatly after 24 to 25 weeks. Q: Can a baby survive at 28 weeks? A: Yes. Babies born at 28 weeks have a high survival rate, often over 90% in advanced NICUs, but they may still require weeks of hospital care. Q: What is considered premature? A: Any baby born before 37 weeks of pregnancy is considered premature. This includes late preterm (34 to 36 weeks), very preterm (less than 32 weeks), and extremely preterm (less than 28 weeks). Q: Is there a crash course in medical terminology/acronyms? A: Yes, here is a glossary to help guide you, it can be overwhelming - and that is OK. A Final Word of Encouragement Having a premature baby can feel like stepping into a world you never expected, but you are not alone. The NICU is a place of both challenges and miracles. With time, care, and love, many preemies go on to live full, healthy lives. Celebrate every milestone, no matter how small, and know that your role in your baby’s journey is powerful. 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Here are some terms you may come across during your prematurity journey. < Back NICU Glossary Here are some terms you may come across during your prematurity journey. Listen To The Article Grahams Foundation NICU Glossary Terms .pdf Download PDF • 180KB Grahams Foundation NICU Glossary Terms .pdf Download PDF • 180KB A Acidosis Caused by the accumulation of waste acids in the body as a result of either breathing difficulties or poor functioning in metabolic systems. Anemia A condition where the number of red cells in the blood is lower than normal. ( Crit or hematocrit is the test used to measure the percentage of red blood cells in relation to the total volume of blood.) Apnea Is an interruption in breathing that lasts 15 seconds or longer. Some preemies need manual stimulation or drug therapy to restart or maintain normal breathing patterns. (Also called apneic episodes or apneic spells) Adjusted Age Is a preemie’s chronological age minus the number of weeks she was born early. (Also known as corrected age) B Bili Lights & Bili Blankets Used to treat jaundice, which is common in all newborns. (This may also be called phototherapy.) Blood Gasses The measure of levels of oxygen and carbon dioxide in a baby’s blood. Bradycardia A slowed heart rate. Brady Episodes are usually temporary and often associated with apnea in preemies. (Also called Brady’s or B’s) Brainstem Auditory Evoked Response Test A hearing test for newborns. Bronchopulmonary Dysplasia (BPD) Lung damage and scarring that can be caused by prolonged periods of mechanical ventilation. (Sometimes called Chronic Lung Disease) C Cardiopulmonary Monitors Track a baby’s heart and breathing rates. An apnea monitor detects interruptions in breathing. (Also called cardio-respiratory monitors) CAT/CT Scans Use a narrow band of radiation paired with computer imaging systems to produce precise pictures of tissues. (Short for computed tomography scans) Catheters Small, thin plastic tubes that deliver fluid internally or are used to remove fluid from a baby’s body. Broviac catheters are designed to stay in place for weeks or months. Cerebral Palsy A group of conditions caused by damage to one or more areas of the brain during fetal development, birth, or in infancy. It affects control of movement, posture, flexibility, and muscle strength. Continuous Positive Airway Pressure (CPAP) Delivers oxygen through nasal cannula or endotracheal tubes to help a preemie breathe by keeping the air sacs of the lungs open. D De-saturation (Desat) An episode when a baby’s oxygen saturation is low. Developmentally Delayed A term used to describe infants, toddlers, and children who haven’t reached the milestones expected for their age groups. E Echocardiogram A specialized form of ultrasound focused on the heart. Edema Puffiness or swelling caused by fluid retention. Endotracheal Tubes Small plastic tubes that pass through a baby’s nose or mouth into the windpipe to deliver oxygen through a ventilator. (Also called ET Tubes) Exchange Transfusions A special kind of blood transfusion, often used to treat severe jaundice, in which some of a preemie’s blood is removed and replaced with a donor’s blood. F Feeding Tubes Help babies who are too small or weak to feed by mouth get the nutrition they need. These may be inserted into the stomach via the nose (NG tube) or the mouth (OG tube), and typically do not cause babies any discomfort. This way of feeding a preemie is known as gavage feeding . G Gastroesophageal Relux When the contents of a baby’s stomach moves back up into the esophagus, usually due to an immature junction between the two. This is very common among preemies. Gastronomy Tube (G-Tube) A way of delivering nutrition through a surgically created opening in the stomach. Gestational Age Is the age of the preemie measured from conception to birth H Hydrocephalus An accumulation of fluid in the ventricles of the brain. In preemies, this condition is often caused by intraventricular hemorrhage. (Sometimes called water on the brain) Hypoglycemia The medical term for low blood sugar. I Input & Output (I&O) The measurement of both fluids given during feedings and the amount excreted in urine and stool. Ileal Perforation When a hole in the small bowel spontaneously occurs, can happens with extremely premature babies. Infant Warmers Open beds with overhead heaters used to maintain a preemie’s body temperature. (Also called radiant warmers) Intracranial Hemorrhaging Bleeding within the skull. In preemies, this usually occurs in the ventricles (IVH) though it can happen in any part of the brain, and may cause intellectual or physical difficulties. Isolletes / Incubators Used to regulate temperature but are enclosed, and also protect babies from germs and noise. IVs / Infusion Pumps Help deliver fluids and medications directly into a preemies bloodstream. An IV can be placed in a baby’s scalp, hand, arm, foot, or leg. PICC lines or central lines are placed in larger vein when more medications or fluids are needed or they’re needed for a longer period of time. J Jaundice Yellowing of the skin and eyes caused by the accumulation of a normal waste product called bilirubin. K Kangaroo Care A way of holding a preemie with skin-to-skin contact that can be incredibly comforting to both parents and babies. M MRI (Magnetic Resonance Imaging) Scanning machines that use strong magnets paired with computer imaging systems to produce extremely detailed pictures of tissues. N Nasal Cannulas Soft plastic tubes that go around a preemie’s head and under her nose where nasal prongs deliver oxygen. Necrotizing Enterocolitis (NEC) Swelling, redness, and tenderness of the intestine caused by decreased blood supply or infection. Severity varies from case to case. Neonatologists Pediatricians who have trained specifically to care for premature, sick, and special needs newborns. O Osteopenia of Prematurity (OOP) A decrease in the amount of calcium and phosphorus in a baby’s bones that causes them to become brittle and weak. P Patent Ductus Arteriosus (PDA) The incomplete closure of the ductus arteriosus, a blood vessel connecting the pulmonary artery to the aorta. Usually this vessel closes soon after birth; when it remains open, it can be treated medically or surgically. Persistent Pulmonary Hypertension (PPHN) High blood pressure in the lungs that causes blood vessels in the lungs to narrow. This can lead to breathing problems. Physiologic Monitors Newer model monitors which are computer systems that can record information, review trends, and filter out false alarms. Pneumothorax A condition in which air from a preemie’s lungs leaks out into the space between the chest cavity and the lungs themselves. Larger leaks may require surgical repair. Pulmonary Interstitial Emphysema Occurs in babies on ventilators when bubbles form around the alveoli of the lungs. Pulse Oximeters Monitor a baby’s blood oxygen level using a tiny infrared light attached to the foot or the hand. R Retinopathy of Prematurity (ROP) Scarring and abnormal growth of blood vessels in the retina. Because the retina does not mature until close to term, the growth of blood vessels can be altered by many factors related to prematurity. Respiratory Syncytial Virus (RSV) A virus that causes respiratory tract infections that are particularly dangerous in preemies and infants with chronic lung conditions. Respiratory Distress Syndrome (RDS) A serious breathing issue caused by lung immaturity and the absence of lung surfactant in preemies. S Systematic Inflammatory Response Syndrome (Sepsis) A widespread infection of the blood usually treated with antibiotics. Specialists You may meet some of these specialists in the NICU: neonatal clinical nurses, respiratory therapists, occupational and physical therapists, social workers, lactation consultants, dieticians, apnea specialists, surgeons, and pediatric specialists who deal with very specific conditions. Surfactant A detergent-like substance used to keep the tiny air sacs in a preemie’s lungs from collapsing. Synchronized Inspiratory Positive Airway Pressure (SiPAP) This can also be called a Bi Level CPAP; gives two levels of CPAP to babies, one right after another. T Tachycardia A faster than usual heart rate. Tachypnea A faster than usual respiratory rate. Temperature Probes Sensors taped to a preemie’s stomach to monitor their skin temperature and calibrate the temperature in an isolette or infant warmer. U Ultrasound Uses sound waves to create images of tissue to diagnose a range of conditions. Umbilical Catheters Inserted into the belly button to painlessly draw blood or give a baby nutrition, fluids, medicines, or a transfusion. V Ventilators / Respirators Help preemies breath via a tube that pumps warm, humidified air into the lungs. Sometimes during testing an oxyhood may be used. High-frequency ventilation is a type of ventilation designed to be gentler on delicate lungs. Previous Next Send Comfort When It Matters Most Quick View Complimentary Preemie Parent Care Package Price $0.00 Quick View Premium Preemie Parent Care Package Price $25.00 Quick View Complimentary Loss and Remembrance Care Package Price $0.00 Quick View Complimentary (Digital) Preemie Parent Care Package - English Price $0.00 Quick View Complimentary (Digital) Preemie Parent Care Package - Spanish Price $0.00 Quick View Complimentary (Digital) Preemie Journal Price $0.00 Discover More Guidance, Comfort, and Care 18 Things You Might Not Know About Premature Birth 8 Thoughtful Things to Say (and Do) for Parents of a Premature Baby Adjusting To Your New Reality Early Intervention 101

Discover 8 heartfelt phrases and 5 practical ways friends and family can offer real comfort and support to parents of premature babies. < Back 8 Thoughtful Things to Say (and Do) for Parents of a Premature Baby Discover 8 heartfelt phrases and 5 practical ways friends and family can offer real comfort and support to parents of premature babies. Listen To The Article If you are wondering what to write or say to a parent of a premature baby The most important thing is to be genuine, encouraging, and specific about your support. Simple, heartfelt words like “Congratulations, your baby is beautiful” paired with tangible help, such as offering a ride to the NICU or dropping off a meal, can make a world of difference for parents navigating the NICU. Premature birth can be overwhelming for new parents. Their days may be filled with hospital visits, medical updates, and emotional ups and downs. As a friend or family member, your words and actions can help them feel less alone during this time. Understanding the Preemie Parent Experience Before you decide what to say, it helps to understand what preemie parents are going through: The NICU rollercoaster: Progress can change daily, even hourly. Emotional strain: Parents may feel joy, fear, pride, guilt, and exhaustion all at once. Physical demands: Frequent hospital trips, disrupted sleep, and physical recovery from birth. Social isolation: They may miss milestones, events, and everyday interactions. Because of this, even well-meant comments can sometimes hurt. Your goal is to acknowledge their journey, celebrate their baby, and offer meaningful help. 8 Things to Say to Preemie Parents Here are eight thoughtful things you can say, along with why they work. “Congratulations! Your baby is beautiful.” Why it works: Every baby deserves celebration. This shifts focus from worry to joy. “When can I come visit you and the baby?” Why it works: Shows you want to be present, while letting parents set boundaries. “It’s okay to feel however you feel, and I’m here to listen anytime.” Why it works: Validates emotions without pressure to be positive all the time. “You’re doing an amazing job. You’re stronger than you know, and your baby is strong like you.” Why it works: Affirms their strength and their child’s resilience. “Can I give you a ride to or from the hospital? Or watch the kids so you can visit?” Why it works: Specific offers remove the burden of asking for help. “If you’d like company in the NICU, I’d be happy to just sit with you.” Why it works: Quiet presence can be deeply comforting. “How are you holding up, and what can I do to help today?” Why it works: Encourages honest conversation and immediate support. “I want to know more about your baby’s journey. What can I share with others for you?” Why it works: Helps share updates without parents repeating difficult news. 5 More Ways to Support Beyond Words Your presence and actions can speak just as loudly as your words. Here are practical ways to show support: Deliver a NICU-friendly care package Include snacks, self-care items, hand lotion, a notebook for medical notes, and a cozy blanket. Send encouraging notes or texts A short “Thinking of you” or “You’ve got this” can brighten a hard day. Organize a meal train Coordinate friends and family to provide meals so parents do not have to think about dinner. Help with everyday chores Offer to do laundry, mow the lawn, walk pets, or grocery shop. Be the update messenger Share updates with extended family or friends on behalf of the parents, with their permission. Follow the Parent’s Lead There is no one-size-fits-all script for supporting a preemie parent. If they are distraught, offer comfort. If they are laughing, join them in that joy. If you see a need such as childcare, food, or errands, fill it without being asked. Most importantly, avoid assumptions about their baby’s health or development. Every preemie’s journey is unique. Sample Note for a Preemie Parent If you are writing a card, here is a heartfelt example: Dear [Parent’s Name], Congratulations on your beautiful baby. I can only imagine the strength it takes to navigate this journey, and I am here for you in any way you need, whether that is listening, helping with errands, or simply sitting with you at the hospital. Please know you and your little one are in my thoughts every day. Frequently Asked Questions Q: What should I write to a preemie parent? A: Write something heartfelt, encouraging, and focused on both the baby and the parents. Celebrate their new arrival and offer specific ways to help. Q: How do you comfort someone with a baby in the NICU? A: Be present, listen without judgment, offer practical help, and follow their lead on what they need. Q: What should you not say to a NICU parent? A: Avoid comments that minimize their experience, make comparisons to other babies, or offer unsolicited medical advice. Helpful Resources Order a NICU Care Package to send comfort to a family. View our Resource Library for preemie parents and supporters. Read: What to Expect with a Premature Baby | NICU & Preemie Parent Guide Previous Next Send Comfort When It Matters Most Quick View Complimentary Preemie Parent Care Package Price $0.00 Quick View Premium Preemie Parent Care Package Price $25.00 Quick View Complimentary Loss and Remembrance Care Package Price $0.00 Quick View Complimentary (Digital) Preemie Parent Care Package - English Price $0.00 Quick View Complimentary (Digital) Preemie Parent Care Package - Spanish Price $0.00 Quick View Complimentary (Digital) Preemie Journal Price $0.00 Discover More Guidance, Comfort, and Care 18 Things You Might Not Know About Premature Birth 8 Thoughtful Things to Say (and Do) for Parents of a Premature Baby Adjusting To Your New Reality Early Intervention 101

Now that you have had your preemie - get ready to get comfortable (or at least as comfortable as you can) in the NICU (neo-natal intensive care unit). < Back NICU Survival Story: From a Preemie Parent Now that you have had your preemie - get ready to get comfortable (or at least as comfortable as you can) in the NICU (neo-natal intensive care unit). Listen To The Article Remember, your baby is fully taken care of. They have everything they could possibly need. You, on the other hand, are totally unprepared and have been thrown into the deep end. Even if you knew your baby was going to have to spend time in the NICU after being born, there is no doubt that you are out of your element. Here are 5 things that will help you survive your time in the NICU. A COMFY UNIFORM Make sure you have clothing you don't mind sitting around in for hours at a time. Think yoga pants, loose shirts or oversized button down shirts, a sweater (those hospital rooms are usually kept a little cold), and slipper like shoes. Being comfortable is one of the few things you can control in the NICU - so make sure you are. And remember, there is not a person in there that will care if you have worn the same basic outfit every single day you are there. The button down shirt is especially helpful for kangaroo care (skin to skin time with your baby). Also, if you happen to be pumping, the button down shirt gives you easy access. A BREASTFEEDING PILLOW Even if you are not going to breastfeed, having this type of pillow in the NICU makes those moments when you are holding your precious preemie that much more comfortable. Some NICU’s will have a place near your baby’s isolette to keep your pillow. (If you have grandparents visiting who want to hold your baby, this pillow is also a great way to give them a little extra support.) SOMETHING TO DO Yes, you are there to be with your baby and participate in their medical care. And you will do that, but, a lot of the time you will be sitting next to the isolette or crib watching your baby sleep. For some, this is a good time to read a book or listen to a podcast. It is great to be there and to have an escape at the same time. A SMALL INSULATED COOLER This item has a dual purpose. When you arrive at the start of the day, the cooler allows you to bring some food and drinks with you. Hospital food gets tiresome quickly, and, depending on where your hospital is located, finding other food to eat can be difficult or expensive. At the end of the day, the cooler can be used to transport any milk you may have pumped (if you are pumping) back home to be stored in your freezer. SOMEONE WHO GETS IT Ok - this is not really something you can bring with you, but hopefully something you can find in the NICU. The NICU is filled with other scared and isolated parents. If you find one you click with, lean on them. They understand what you are going through. You can also request to be connected with one of our mentors. Previous Next Send Comfort When It Matters Most Quick View Complimentary Preemie Parent Care Package Price $0.00 Quick View Premium Preemie Parent Care Package Price $25.00 Quick View Complimentary Loss and Remembrance Care Package Price $0.00 Quick View Complimentary (Digital) Preemie Parent Care Package - English Price $0.00 Quick View Complimentary (Digital) Preemie Parent Care Package - Spanish Price $0.00 Quick View Complimentary (Digital) Preemie Journal Price $0.00 Discover More Guidance, Comfort, and Care 18 Things You Might Not Know About Premature Birth 8 Thoughtful Things to Say (and Do) for Parents of a Premature Baby Adjusting To Your New Reality Early Intervention 101

Cold and flu season can be terrifying for preemie parents, often called “lock-down” time to protect their baby from germs. < Back Tips for Managing Cold, Flu, and RSV Season with a Preemie Cold and flu season can be terrifying for preemie parents, often called “lock-down” time to protect their baby from germs. Listen To The Article We asked our preemie parent mentors to create a list of ideas to help other parents of preemies get through cold, flu, and RSV season. The tips aren’t just for parents of preemies, though! You can share this list with family and friends, because we can all do our part to protect preemies and other babies and kids who are especially vulnerable to colds, the flu, and RSV. Here’s what you need to do to get through winter with your preemie: Share the importance of FREQUENT hand washing with family and friends. Make sure all visitors wash their hands before holding your preemie. Visitors should also leave their shoes by the door to avoid bringing germs (and dirt) into your home. Smokers and anyone who has been around sick people should change their clothes before spending time around your premature baby. Ask visitors to leave their purses and bags at the door. These items can be full of germs! Put antibacterial wipes at the door so visitors to clean their cell phones (which are also full of germs). Have hand sanitizer in multiple locations around your home. Simply do not allow anyone around your preemie if they are sick , have been sick, or have been around someone who is sick. Be specific when asking about recent illnesses. Ask visitors if they are symptom free – are they/have they been free of a fever? Do they have body aches or chills? Do they feel run down or unusually tired? Do they have a scratchy throat or a cough? Stay away from crowds. Think carefully before attending any parties or family gatherings unless you can be 100% sure no one there will be sick. It’s okay to go outside and take a walk. If you find yourself with a beautiful day in your area, take advantage of it! Fresh air is not going to hurt your child. If anything, it will do you and your child quite a bit of good to be outside the house and in the fresh air (away from crowds). When you must take your child for a doctor’s appointment, communicate with the office ahead of time that you will be bringing a medically fragile preemie into the office. Make it clear that you need to be able to wait away from others in order to keep your child healthy. Ask your doctor if there is a separate waiting area away from sick patients. If not, ask if you can go straight to the exam room. Or if you can wait in your car until they are ready for you. If possible, schedule appointments early in the morning to minimize your preemie’s exposure to germs. Ask about the Synagis shot to help protect against RSV. While obtaining the shot is becoming more and more difficult, ask your doctor to advocate to your insurance company on your behalf. Those “Don’t Touch My Baby” sign are a must in cold, flu, and RSV season. Hang one everywhere – on the car seat, on your diaper bag, on the stroller. Do not be afraid of offending others. Keeping your child healthy is your number one priority. Shower or change clothes after doctor appointments or when older children or your spouse arrive home. Clothes are full of germs. You never know what germs you may have picked up that are now residing on your clothes. If possible, try to run errands alone on the weekend or in the evenings when your spouse or a friend can watch your preemie. Place signs in your house to remind friends and families of the procedures you have put into place and why they are in place. Remind them that your child has a weakened immune system due to their premature birth and that you are doing all you can in order to protect them this winter. If illness is keeping you from being able to see family and friends in person, connect with them virtually. Skype play dates, and FaceTime with grandparents. Even if it’s not in person, a little face to face time will help ease the tedium of the “lock-down” season. Most important, stand your ground. Yes. It is HARD to have to tell friends and family they can’t visit because they have been sick. You have put the “lock-down” into place to protect your child and they are your number one priority. If your friends and family insist on helping you in some way, ask them to make a meal and leave it by your door. Ask them to mail you a gift card or leave it in your mailbox. Even though they can’t see you and your baby in person, there are ways they can still help you. Previous Next Send Comfort When It Matters Most Quick View Complimentary Preemie Parent Care Package Price $0.00 Quick View Premium Preemie Parent Care Package Price $25.00 Quick View Complimentary Loss and Remembrance Care Package Price $0.00 Quick View Complimentary (Digital) Preemie Parent Care Package - English Price $0.00 Quick View Complimentary (Digital) Preemie Parent Care Package - Spanish Price $0.00 Quick View Complimentary (Digital) Preemie Journal Price $0.00 Discover More Guidance, Comfort, and Care 18 Things You Might Not Know About Premature Birth 8 Thoughtful Things to Say (and Do) for Parents of a Premature Baby Adjusting To Your New Reality Early Intervention 101

Donations and support for premature babies and families in need to receive free care packages for nicu parents Become A Preemie Parent Mentor The Preemie Parent Mentor Program is at the heart of our mission. Thank you for your interest in our Preemie Parent Mentor Program. To get started, please review our program's guiding principles. These will help you determine if you are a good fit and ready to become a mentor. Next, apply to become a mentor. Our Preemie Parent Program Director will contact you for an interview and to assess your readiness. If the Program Director determines that you are a good fit and we have an opening, you will need to complete our training program to become a Graham's Foundation Preemie Parent Mentor. Apply Now Guiding With Heart and Experience Guiding With Heart and Experience. As mentors, we understand the delicate balance between listening and sharing. While your own NICU journey provides valuable insights, your first role is to create a safe space where parents can tell their stories and express their needs. We follow their lead in conversation, offering our experiences when helpful, while upholding our commitment to supportive, respectful mentorship. Timely Responses As our Program Director receives mentor requests, they are sent to the Parent Mentor who is the most appropriate match. When you receive an email, please follow up within 48 hours. If you are unable to do so, it is important to let the program director know right away. Comfort Sharing Your Journey The most effective support comes from a place of emotional readiness. As mentors, we've learned to share our NICU experiences with clarity and composure, offering parents the steady, confident guidance they need during challenging times. Acknowledge Your Role As mentors, we're here to support and encourage, while recognizing that medical guidance comes from your child's healthcare team. Our role is to offer emotional support, share coping strategies, and help you feel less alone – while always encouraging you to turn to your healthcare providers for medical decisions. Maintain A Sympathetic Approach We support with empathetic hearts and understanding ears, offering the kind of comfort that comes from having walked this path before. When parents have medical questions, we can share our personal experiences while lovingly guiding them back to their healthcare team for expert advice. Our greatest strength isn't in medical knowledge – it's in being a compassionate friend who truly understands what NICU life feels like. Attend Training and Conference Calls Your engagement matters. Maintaining open communication with our Parent Mentor Program Director ensures we're meeting parents' needs effectively. By staying present and involved, you help us provide the highest level of support to families navigating their NICU journey. Log Parent Communications As part of our compliance as a Parent-to-Parent partner organization, we must keep timely and accurate communication logs with preemie parents. Apply To Become A Mentor Contact First name* Last name* Email* Phone* Languages Spoken* Address Multi-line address Country/Region* Address* Address - line 2 City* Zip / Postal code* NICU Experience Are Your A Preemie Parent?* Yes No Gestational age your baby was born* Current age of NICU baby NICU Discharge Date* Length of recent stay NICU Journey Summary* Other Information Are you willing to respond in a timely manner?* Yes No What do you think would make a good mentor?* How did you hear about Graham's Foundation?* Submit

Get in touch with Graham's Foundation about how we can help you on your Preemie Baby Journey. Contact Graham's Foundation If you have any questions or comments or need to reach us for any reason, please fill out the form below. Submitting a contact form is preferred, as we are a small, virtual, and passionate team AND we also work part-time or volunteer, often at atypical hours. The contact form helps us understand the nature of the inquiry ahead of a discussion. However, you can also call us at (888) 466-2948. First name* Last name* Email* Phone* Subject* Message* Submit

Connect with preemie parent mentors from Graham’s Foundation for guidance, support, and understanding as you navigate life with a premature baby and NICU transition. Preemie Parent Mentors Every prematurity journey is unique, and you are not alone. Our mentors are more than just supporters – they're preemie parents who understand exactly what you're going through. Trained through Parent to Parent USA's evidence-based program, they're here to offer both emotional guidance and practical advocacy skills during this overwhelming time. Let us match you with someone who can walk beside you on your NICU journey. How it Works Take the first step toward one-on-one support from someone who truly understands. Our experienced preemie parent mentors are ready to connect with you through phone, text, email, or video call – whatever works best for you. Your mentor is here to listen, share, and support you through your family's unique journey. 1 Complete Intake Form 2 Get Matched with a Mentor 3 Get Support & Lifelong Friend Request A Mentor Our Preemie Mentors Connect with mentors who understand your specific challenges. Our volunteers are preemie parents who've navigated everything from feeding tubes to early intervention, micro preemie care to postpartum recovery. Whatever path your NICU journey takes – from managing lung issues to mastering breastfeeding – there's a mentor who's been there and is ready to support you. Ashlee C Preemie Mother Amanda B. Preemie Mother Amanda T. Preemie Mother Brendan H. Preemie Father Cori L. Loss within multiples Diana S. Preemie Mother Hannah B. Preemie Mother Holly S. Preemie Mother Jaclyn P. Preemie Mother Jasmine M. Preemie Mother Jennifer F. Loss within multiples Jessica P. Preemie Mother Johsie B. Preemie Mother Kristina M. Preemie Mother Laura K. Preemie Mother Lauren A. Preemie Mother Maurie H. Preemie Mother Meagan P. Preemie Mother Meghan R. Preemie Mother Mike C. Preemie Father Nicholle C. Preemie Mother Noelle Y. Preemie Mother Pooja L. Preemie Mother Rick S. Preemie Father Serena C. Preemie Mother Sheena G. Preemie Mother Tala M. Preemie Mother Vanessa D. Preemie Mother Vi V. Loss within multiples Request A Mentor Our Preemie Loss Mentors Our preemie parent loss mentor program offers support to parents experiencing the loss of their baby. We understand the unique challenges and grief associated with preemie loss. Our mentors have experienced similar losses. We offer a safe space for grieving parents to share their feelings and experiences without judgment. We can also connect you with resources and information relevant to your specific situation. If desired, our mentors can offer practical advice and coping strategies based on their own experiences. Our program is a supportive community that reduces isolation and fosters connection. Cori L. Loss within multiples Jennifer F. Loss within multiples Johsie B. Loss within multiples Nicole L. Loss mentor Michelle V. Loss mentor Vi V. Loss within multiples Request A Mentor Become A Mentor Your NICU story has the power to help others. Become a Graham's Foundation mentor and support families facing the challenges you once knew so well. Share your journey, wisdom, and understanding with parents of premature babies who need someone who truly gets it. Your experience matters – help us reach more families who need a guiding hand through their NICU journey. Become A Mentor