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Review the terms and conditions of Graham’s Foundation, including website use, services, and legal policies. Understand your rights and responsibilities. Terms & Conditions Updated January 1, 2025 Terms and Conditions for Graham’s Foundation Welcome to Graham’s Foundation ("GRAHAM’S FOUNDATION"). These Terms and Conditions ("Terms") govern your use of the GRAHAM’S FOUNDATION website, divorceddadsupport.org (the "Site"), and any content, features, or services provided by GRAHAM’S FOUNDATION (collectively, the "Services"). By accessing or using the Site and Services, you agree to be bound by these Terms. If you do not agree to these Terms, you may not access or use the Site or Services. 1. Acceptance of Terms By accessing or using the Site or Services, you represent that you have read, understood, and agree to be bound by these Terms. GRAHAM’S FOUNDATION reserves the right to modify these Terms at any time, and such modifications shall be effective immediately upon posting on the Site. Your continued use of the Site or Services after the posting of any modifications constitutes your acceptance of such modifications. 2. Description of Services GRAHAM’S FOUNDATION provides online resources, information, and support services to divorced fathers, including but not limited to peer support circles, articles, and other informational content. The Services are intended for informational and support purposes only and do not constitute legal or professional advice. 3. User Conduct By using the Site or Services, you agree to: Use the Services only for lawful purposes and in a manner that does not infringe the rights of, or restrict or inhibit the use and enjoyment of, the Site or Services by any third party. Not engage in any conduct that is harmful, threatening, abusive, harassing, defamatory, vulgar, obscene, libelous, invasive of another's privacy, hateful, or racially, ethnically, or otherwise objectionable. Not impersonate any person or entity, or falsely state or otherwise misrepresent your affiliation with a person or entity. Not upload, post, email, transmit, or otherwise make available any content that is unlawful, harmful, threatening, abusive, harassing, defamatory, vulgar, obscene, libelous, invasive of another's privacy, hateful, or racially, ethnically, or otherwise objectionable. Not upload, post, email, transmit, or otherwise make available any unsolicited or unauthorized advertising, promotional materials, "junk mail," "spam," "chain letters," "pyramid schemes," or any other form of solicitation. Not upload, post, email, transmit, or otherwise make available any material that contains software viruses or any other computer code, files, or programs designed to interrupt, destroy, or limit the functionality of any computer software or hardware or telecommunications equipment. Not interfere with or disrupt the Services or servers or networks connected to the Services, or disobey any requirements, procedures, policies, or regulations of networks connected to the Services. 4. Disclaimer of Warranties The Site and Services are provided on an "as-is" and "as available" basis. GRAHAM’S FOUNDATION makes no representations or warranties of any kind, express or implied, as to the operation of the Site or Services, or the information, content, materials, or products included on the Site. You expressly agree that your use of the Site or Services is at your sole risk. 5. Limitation of Liability GRAHAM’S FOUNDATION will not be liable for any damages of any kind arising from the use of the Site or Services, including, but not limited to, direct, indirect, incidental, punitive, and consequential damages. 6. Indemnification You agree to indemnify and hold GRAHAM’S FOUNDATION harmless from and against any and all claims, damages, losses, expenses, liabilities, and costs (including, but not limited to, attorney's fees) arising from: (i) your use of the Site or Services; (ii) your violation of these Terms; or (iii) your violation of any third-party right, including, but not limited to, any copyright, trademark, property, or privacy right. 7. Governing Law These Terms and your use of the Site and Services shall be governed by and construed in accordance with the laws of Indiana, USA, without giving effect to any principles of conflicts of law. 8. Dispute Resolution Any dispute arising out of or relating to these Terms or your use of the Site or Services shall be resolved by binding arbitration in accordance with the rules of JAMS. 9. Termination GRAHAM’S FOUNDATION reserves the right to terminate your access to the Site or Services at any time, without notice, for any reason, including, but not limited to, your violation of these Terms. 10. Entire Agreement These Terms constitute the entire agreement between you and GRAHAM’S FOUNDATION and govern your use of the Site and Services, superseding any prior agreements between you and GRAHAM’S FOUNDATION.

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In 2017, we found out we were pregnant. But over the next months, a complicated pregnancy wreaked havoc while the life inside fought right along with me. < Back What Preemie Parents Wish You Knew In 2017, we found out we were pregnant. But over the next months, a complicated pregnancy wreaked havoc while the life inside fought right along with me. Listen To The Article By Kari Cobham He came early, weighing in much smaller than a baby his age should have. Minutes later, NICU parents were born & a new journey began. It has been a tough road, one that’s hard to explain if it’s not one you’ve traveled. I wished every day I could express what we needed and what we were feeling to others, but we were too busy barely keeping it together. This is for every preemie or NICU parent who doesn’t have the words to tell you what we’re going through. We don’t know when we’re coming home. We ask the doctors and nurses every day and no one can give us an answer. If we knew, we’d shout it from the mountain tops — with joy, relief and trepidation. Having to answer this question again and again is repeated heartbreak. We need your help, and we may not ask for it. We’re in survival mode and often don’t even have the energy to figure out what to eat. So what can you do that will make a difference? Bring us food or have it delivered. Pick up groceries. Hire a cleaning service for us. Do a load of laundry. Volunteer to spend time with our kids. Your place in heaven will be assured. It’s not about you. We’re in the middle of trauma, focused on the tiny life inside those hospital walls. If we seem distracted or dismissive, if we don’t pick up the phone or answer texts, it’s because we’re in a haze. We don’t have the emotional energy to comfort or reassure you through our own pain. Practice self-awareness and ask yourself if your words or actions add to it. I can’t recommend reading these articles on The Spoon Theory and The Ring Theory enough. This illustration from Glow in the Woods is based on 'The Ring Theory' by Wes Bausmith/LA Times It’s OK to be human around me and tell me that you don’t know what to say or how to react to my situation. You don’t have to try to make small talk or find some way to relate to me because we’re friends. Just sitting in silence with me is enough. —NICU mom Aundreaa Auni Estrada Respect our wishes. If we’re not ready for visitors, don’t take it personally or force the issue. If we’re not ready for you to hold the baby, please understand. If we ask you to wash your hands before you hold or touch them, honor it. If you’ve been sick or have a sick child, please stay away. It’s literally life or death for us. Respect the decisions we make and the boundaries we set. We went through a lot to bring our little one into the world and we’re fighting with everything we have to protect them. Worrying about your germs shouldn’t be on the list. “When we hold space for other people, we open our hearts, offer unconditional support, and let go of judgement and control.” Read all about what holding space really means. We’re not getting any rest (despite your best advice). We’re still up every three hours to pump. We lie awake well into the night with a knot at the center of our chests, wishing our baby was with us. We call the NICU at odd hours to make sure they’re still alive. We wake up crying. We wake up hearing phantom alarms in our heads. Having a baby in the NICU is in many ways harder than having a baby at home. Coming home from the NICU is just the beginning . For some of us, leave has long run out. We’re sleep-deprived, juggling a baby with lingering health conditions who needs extra care and doctors’ and specialists’ appointments, alongside work, family and post-NICU PTSD . We feel isolated and alone. (Our son was on a home apnea monitor until he was six months old. Here’s what that was like .) We’re not being weirdly protective; we’re desperately trying to prevent a PICU stay. The very thought of one is terrifying. It only takes a moment, a scent, a sound, to trigger a flood of memories and anxiety. Every journey is different; some babies stay longer than ours; but we are united in this. Everyone assumes everything is OK because you’re home. Support dries up when you need it most. But everything is not OK. It’s so not. We have all the feelings. Imagine weeping at night to the sounds of moms tending to fussy babies in the maternity ward while yours lies tiny and fragile, hooked up elsewhere to a machine. Imagine propelling yourself out of bed to shuffle down the hall, ring the NICU buzzer to be let in, and stand over them, gently stroking soft skin — if you’re allowed — not covered with electrodes, to let them know you’re there. Imagine not being able to hold your baby when you want to. Imagine leaving the hospital empty-handed night after night, existing in a revolving stasis of unknowns. (The first night is the most wrenching.) Imagine your baby’s first bath administered by a nurse’s efficient hands when you weren’t there. Imagine feeling like you’re a dedicated observer, not their parent because nurses provide their care. Imagine explaining to your other kids why they can’t see their sibling. Imagine the pang that the sight of ripe, pregnant bellies brings, of babies in your social feeds born after yours, home long before. Imagine that months later, the mere sight of the hospital exit or a neonatal ambulance rushing by can make you fall apart. Imagine the quiet rage at hearing women complain about their last trimester when you would’ve given anything to have had one. Imagine living in a body that feels like it failed you all. Imagine the fear another positive pregnancy test brings, the worry about it failing again. Nothing compares. We know you’re trying to comfort us, trying to commiserate with what we’re going through with stories of friends and family who were hospitalized. But unless you’ve been there, you cannot know. We watch and wait for our babies’ milestones, anxious for each missed one. We know they’re tiny; they can’t be compared to babies their “age.” And even if they’re not tiny, they’re still a preemie and we do face all the challenges that come with that. Our son L. in the NICU We’re not the same people you knew before. We’ve been through war and we’re still fighting those battles. We’ve seen superhuman strength from the tiniest of humans. We’ve stared death in the face and beat it back with faith, love and sheer determination. Sometimes, death would not be beaten. We’ve learned to focus on today. We know we’re stronger than we ever thought possible. We hold our babies a little longer and a little tighter. We feel a deep sense of pride and gratitude for every single milestone. We know how quickly life can change; we’ve had a front seat to its fragility. But we are all survivors. That is who were are. 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

Coping with the loss of a premature baby is an incredibly challenging journey, and this article offers a compilation of additional resources to provide comfort, guidance, and support during this difficult time. < Back Premature Baby Loss & Remembrance Resources Coping with the loss of a premature baby is an incredibly challenging journey, and this article offers a compilation of additional resources to provide comfort, guidance, and support during this difficult time. 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

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

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. 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

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. 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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

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