NICU for Preemie: What to Expect?

1. Preemie World: A Brief Overview of Preemie Neonates’ Categories and Preemie Neonates’ Care

Babies born too soon – ‘extremely preterm’ preemies and ‘preterm’ preemies are more likely than full–term babies to experience newborn health problems, such as difficulty breathing, heart diseases, lungs collapse, mental retardation, cerebral palsy, vision loss or hearing loss. Babies born before 32 weeks face the highest risk of serious complications, but even those born between 34 and 36 weeks (called ‘late preterm births’) are more likely than full–term babies to have difficulty breathing, feeding, or regulating their body temperature.

‘Preemie’ is another word for premature baby. It sounds more delicate for mommies, especially when your preemie and you are facing the inevitability of staying in Neonatal Intensive Care Unit, therefore, is preferable to be used instead of the medical term ‘premature baby’. Having a micro–preemie bundle of nerves will cause you to desire things you would never have imagined: to hold your baby cuddled up against you, to touch your preemie’s tiny hands and legs, to embrace your preemie tightly (as holding your preemie for the one to two hours a day is like holding your beating heart in your hands), to depict your preemie with your wedding ring on your baby’s arm or leg as a visual ‘metaphor’ for delicacy of tiny preemie’s body (sometimes preemies are so tiny that their father’s and mother’s wedding rings could fit around their ankles, wrists, elbows).

Babies born between 23^rd week and 30^th week of gestation are called “very premature,” those who are born between 31^st week and 34^th week of gestation are labeled “moderately premature,” and those who are born between 34^th week and 37^th week of gestation are considered “late preterm.” In attempt to represent more accurately the appropriate definitions according to the gestational week when the baby was born, there were distinguished three basic types of premature babies and two transitive types. They include the following interpretations: extremely preterm: babies born at less than 28 weeks of their projected due date pregnancy; very preterm: babies born at less than 32 weeks of their projected due date of pregnancy; late preterm: babies born between 34–37 weeks of their projected due date or more inclusive interpretation: extreme (extremely) preterm: babies born at less than 28 weeks gestation; very preterm: babies born from 28 to 31 weeks gestation; moderate preterm: babies born from 32 to 33 weeks gestation; late preterm: babies born from 34 to 36 weeks gestation; early term: babies born from 37 to 39 weeks gestation.

Extremely preterm category: ‘Micro Preemies’ peculiarities: What medical interventions in the attempt to save the preemie’s life to expect if you have a micro preemie neonate?

Babies born prior to 28 weeks of gestation are referred to as ‘Micro Preemies’. They weigh under one pound and are at the highest risk for further serious complications from their premature birth. The baby born at 22 to 24 weeks, the very earliest age of survival for preemies, weighs just over a pound at birth. At present, the definition of preemie viability is medically set at 23 weeks. In many hospitals or clinics, this is the cutoff point of medical intervention in the attempt to save the preemie’s life. Preemie, born under 23 weeks of gestation is medically considered as an ‘inviable fetus’, and most of the hospitals’ and clinics’ physicians can officially completely reject medical intervention in the attempt to save the preemie’s life and surreal worst–case scenarios both for preemie and his/her parents become inevitable reality.

What happens in the Neonatal Intensive Care Unit if you have extremely preterm baby ‘Micro Preemie’?

Being born prematurely or with an illness or disability makes babies especially vulnerable for the first several months of life. When micro preemies are born, their skin is nearly transparent and so fragile, that it can be damaged or even pulled off just through a light touch. They require breathing support because their lungs have not had enough time to mature and for the same reason, a lack of maturity, they have underdeveloped digestive systems. Many of micro preemies have issues with their cardiovascular system, particularly, with their heart, because the connection between their blood vessels has not yet closed, and they frequently have problems with their eyes, because the blood vessels are undeveloped at birth, and grow too rapidly after birth damaging the retina.

Micro preemies are usually born with pink translucent skin, through which is possible to notice the tiny blood vessels, with closed or widely opened dark blue eyes, sometimes crying, but there are several life-threatening conditions, taken into consideration as emergencies –– micro preemies can’t breathe on their own because their respiratory systems aren’t fully developed. Being 26 weeks old inside the womb, fetus inhales and exhales small amounts of amniotic fluid, which is essential for the development of his/her lungs. Consequently, being born 23^rd –28^th gestational week is a constant and ongoing challenge both for clinicians and preemie. Primarily, these tiny babies need help breathing.

Neonatal oscillators/ventilators: breathing machines, which accurately provide preemie neonates with oxygen

Immediately after the delivery, micro preemies are hooked up to breathing machines (the oscillators/ventilators) to breathe their first breath of air. The ventilator administers small puffs of oxygen, and though these ‘baby breaths’ are small, they give underdeveloped lungs a significant advantage over those that receive no assisted breathing and those given oxygen through less advanced ventilators. In some cases where lung disease is worse, your baby may be placed in a high–frequency oscillator, which can send between 600–900 very gentle breaths per minute into her lungs.

Neonatal incubator: multifunctional clear plastic bed, which is of crucial importance for preemie neonates

After that, micro preemies are placed inside an incubator, a clear plastic bed, which mimics the conditions of the mother’s womb by providing your baby with stable and optimal growing conditions, balancing his or her need for just the right amount of heat, humidity, and, in some cases, oxygen, reducing the risk of complications from outside elements, such as changes in room temperature and viral and bacterial infection. When you will have the medical permission, you can touch gently your baby through holes (also called ports) in the sides of the incubator.

The most obvious and crucial functions of the incubator are protection, oxygenation, and monitoring. Incubators are fully temperature controlled, protecting neonates from harmful cold, providing insulation from outside noise, keeping sterility inside, incubators protect preemie infants from germs and minimize the risk of infection. The enclosure also keeps out all airborne irritants like dust and other allergens.

Oxygenation is of critical importance for an extremely preterm baby. It is a life–saving therapeutic process in which oxygen is administered directly to facilitate preemie’s breathing. There are three methods of oxygenation. The most common method of preemie’s oxygenation involves a nasal cannula, which pipes oxygen directly into the preemie’s nostrils. If there is a serious medical reason why this method should be avoided, physicians may place a plastic hood over the infant’s head that creates a small oxygen environment around the nose and mouth. An alternative method often chosen for the treatment of premature neonates is continuous positive airway pressure (the abbreviation for this method is ‘CPAP’).

Both monitoring equipment and observation equipment is often built into the infant incubator unit. It includes cardiac monitors, brain–scan equipment, blood–monitoring equipment, thermometers and other instruments for observing vital signs (because of the small, enclosed environment, some data such as temperature and heart rate can be accurately measured without the need for invasive instruments).

Neonatal warmer: the machine, used for normalization and regulation of the preemie neonates’ temperature 

After delivery, newborn baby experiences thermal instability as the temperature of mother’s womb is higher than the air temperature of the delivery room. For preemie neonates the warmth is essential because their tiny body can’t regulate the temperature at all: the delicate balance between normal temperature and hypothermia can be easily disrupted, and it is vital to prevent the fall in infant’s temperature as it can even increase the mortality risk. Neonate’s temperature can fall by 1–2°C over 30 minutes. If a newborn baby loses heat rapidly, it leads to a phenomenon called ‘cold stress’. Oxygen consumption and metabolism increase, and this can even lead to hypoxia. Consequently, the thermal stability is essential for neonates and more essential for preemies.

The machine, used for normalization and regulation of the preemie neonate’s temperature is called ‘infant warmer’. Infant warmers are used to prevent neonatal hypothermia, especially in preterm infants. Infant warmer defines the normal temperature of a neonate at 36.5–37.5°C, and gradations of hypothermia including mild (36–36.5°C), moderate (32–36°C) and severe (<32°C). Electric devices include incubators that heat the air around the neonate, radiant warmers that use an overhead heat lamp, and heated mattresses that continuously warm the surface underneath the baby.

Neonatal monitors: machines, used for continuous monitoring of the preemie neonates’ vital signs 

All Neonatal Intensive Care Unit small patients are continuously and closely monitored, especially those, who have serious diseases or medical complications. A micro preemie may have wired stickers on his or her chest, feet, wrists, arms, and legs. This measures the baby’s heart and breathing rates and his or her blood’s oxygen saturation. A monitor attached to an umbilical artery intravenous line may measure the baby’s blood pressure. The monitoring of the baby’s blood pressure is of vital importance because extremely premature babies have very fragile blood vessels that can easily break and bleed, especially with rapid changes in blood pressure, but this is one of the complications that happens less frequently in babies > 28 weeks. Monitors in the NICU display the baby’s heart rate, breathing rate, blood pressure, and oxygen levels in the blood. Other parameters can be displayed as well, depending on the baby’s condition and what clinicians might need to monitor.

Many monitors in the NICU come equipped with a warning signal. If there are some changes in neonate’s vital signs, warning signals immediately inform the medical team about the baby’s condition, and the data, which is continuously being displayed and fixed during the day, can be compared and the emergencies can be successfully prevented or managed in time with the minimum medical intervention, or, in the worst–case scenarios, at least the neonate’s life can be saved even if medical intervention presupposes urgent surgeries.

Neonatal infusion pumps: machines, used for administrating medications and fluids intravenously given to preemie neonates

The infusion pump intravenously administers medications and fluids given to neonates. It provides the optimal amounts needed, dosages so small that even a slight error can cause serious complications by disrupting the delicate balance of liquids, minerals, molecules etc. For this reason, the pumps are often fitted with safety features that carefully monitor how much medication is needed based on prescribed amounts. The experienced pharmacists are also working with the medical teams to accurately prescribe (choose with your neonatologist the medications individually according to your preemie’s symptoms to treat or to prevent disease with minimal adverse reaction (adverse physiological effect) when ingested or otherwise introduced into the body) and handle the micro–dosing your little bundle may need during his or her time in the NICU.

What is about food, medications, fluids, and blood?

Medications and other solutions, including parenteral nutrition solutions, are usually given through a venous line (peripheral or central) unless discussed with the staff neonatologist.

Micro preemies’ digestive systems are immature; therefore, they are given Intravenous (IV) nutrition at first. Most will have intravenous lines in their umbilical cord stumps (called ‘umbilical lines’) for the first week or two of life, and a PICC line or peripheral intravenous later.

After the umbilical cord is cut at birth, newborn babies have the short stumps of the cord remaining. Because the umbilical cord stump is still connected to their blood and circulatory system, a catheter (small flexible tube) can be inserted into one of the two arteries or the vein of the umbilical cord. Umbilical Artery Catheters (UAC) are used primarily for monitoring blood pressure and obtaining samples for blood gases, but it is also possible to give through additional catheters medications, fluids, and blood. After placement of the umbilical catheter, X–rays are taken to check the location in the baby’s body. Every medical intervention is temporary and soon your little bundle of nerves would be your little bundle of joy. One more positive thing: if your baby was born between 23^rd and 28^th gestational weeks, you will literally watch your preemie’s skin forming, his/her dark blue eyes opening for the first time, and you will see his/her feisty personality coming out as he/she will kick and hit away at the nurses when they would inject him/her with needles. You will admire his/her perfectly formed fingers, wrists, ankles, toes, ears, lips, nose, and almond–shaped dark blue eyes. And surely, you will remember a glimpse of hope for being with your baby and NICU as a place, where your hope not only was stronger day after day but also the place, where your preemie was given the chance to survive.

Very preterm category: ‘Preemies’ peculiarities: What medical interventions in the attempt to save the preemie’s life to expect if you have a very preterm baby or, in other words, preemie neonate?

Babies born between 28^th and 31^st gestational week are referred to as ‘very preterm’ or ‘preemies’. Before a very preterm baby is born, the doctors can explain you and your beloved that neither of you would get to see your preemie right away, because they’d immediately intubate your preemie, and that they might even have to revive him/her.

Babies born before 32 gestational weeks have the most breathing difficulties. Immediately after the birth, your preemie will be hooked up to a breathing machine (the oscillator), and he/she will be doing great during 12–48 hours. Your baby will be on a new breathing machine and it means he/she will be one step closer to finally getting this tube out. Even if for the first 48 hours or so, your preemie is doing amazing, so-called ‘honeymoon phase’, then after that, his/her breathing may get really bad.

The most probable scenario of the medical interventions during first week after birth is the same as for micro preemies: your baby will be hooked to the machines, catheters may be inserted into the blood vessels in the umbilical cord, to allow for blood drawing, monitoring, and giving medications and nutrition, and your preemie will be placed inside the neonatal incubator, but in time aspect all these medical interventions will be shorter, because very premature neonates are stronger than micro preemies, even stronger than anyone could imagine. Also, your baby may need medication to keep his/her blood pressure up, may need a blood transfusion already, and maybe receiving antibiotics to treat a possible infection, if your labor was spontaneous.

Life can be so unexpected at times. There will be many emotional moments, triumphs and tribulations on during your preemie and your journey through the NICU, but ultimately, your little bundle will finally get off his/her big breathing machine and will move onto a less intense ventilator. After that one of the most incredible and unforgettable moments will follow, you and your preemie will share a special moment for the first time; you will finally get to hold your preemie for the first time and it will make him/her feel so good. Curled against you, your little one will be able to feel how strong your heart beats for him/her.

Later, your preemie will have gotten his/her PICC line and other arterial lines taken out and will feel so good because it will be possible to curl up small fingers and toes without feeling pain. Your bundle even will be able to impress you and show you he/she can move actively his/her hands too. Very soon there will be moments when you will stay with your baby without continuous medical administration and the big date of taking your baby home will take place.

Moderate preterm category: ‘Moderate Preemies’ and ‘Late–Term Preemies’ peculiarities: What medical interventions in the attempt to save the preemie’s life to expect if you have a moderate preemie neonate or late–term preemie neonate?

Babies born between 32^nd and 36^th gestational week are referred to as ‘moderate preemies’ and ‘late–term preemies’. Moderate and late–term (or near–term) preemies have spent quite a bit of time in your womb, so the odds for their survival are about 99 percent or more. These neonates are less likely to have severe breathing, but they may need help with breathing for a few hours or days. As with any preterm baby, they are still at risk for infections and problems like jaundice, hypoglycemia, and hypothermia, therefore they will spend some time in NICU.

Babies born between 32 and 34 weeks are medically termed as ‘moderate preterm infants’. Babies born between 35 and 38 weeks are medically defined as ‘late preterm infants’. Immediately after birth the doctors at your baby’s bedside probably will place a mask over his/her nose and will blow air into his/her lungs to help inflate them and relieve the respiratory distress. After that, your preemie will be taken to the NICU. In the NICU, the medical team will be working to stabilize your baby; some type of breathing support is likely, from just a small nasal cannula like you may have had during labor all the way to a breathing tube will be inserted into his/her airway. Your little bundle will also be receiving some external heat – either from an overhead radiant warmer or already be in an incubator – and will have an intravenous line placed for fluids, nutrition, and medication.

One week later, if your baby was hooked to the breathing machine, this would be removed and there would be only the device on his/her nose/face that is blowing air into his/her lungs. The Intravenous Catheters (IVs) might be replaced with a different kind of catheter called a PICC line or a PCVC. By the second week of life, your baby may be off of positive pressure ventilation (CPAP) and may only have a nasal cannula in place – or maybe breathing entirely independently! You will hold him/her every time you visit. Nearly in two weeks, you will take your baby at home.

Early–term category: What medical interventions in the attempt to save the early–term baby’s life to expect if you have an early–term preemie neonate?

Babies born between 37^th and 38^th gestational week are referred to as ‘early–term’. These neonates may need help with breathing for a few hours or days. The most common complication, occurred after birth is respiratory distress (difficulty breathing). Prior to birth, your fetus’s lungs are filled with amniotic fluid, and his/her entire blood flow is rerouted to avoid the lungs, because being inside the womb, the oxygen is delivered through the umbilical cord. When the umbilical cord is cut, the lungs must inflate with air, and the blood flow must completely change to go first to the lungs to pick up oxygen, and then out to the body. If it doesn’t occur, the neonate has respiratory distress and needs medical interventions. The early–term babies still have a risk of infections and other problems, but the odds of complications are very low.

Are you coming home soon with your preemie?

In most cases, you will come home with your preemie nearly at 40 weeks gestational age. But this criterion is not conclusive, as there are seven more criteria: 

1. Your small bundle does not have medical complications, 
2. Your small bundle does not need urgent medical interventions (surgeries), 
3. His/her condition is stable, 
4. Your little one must breathe on his/her own and has no unresolved acute medical concerns such as apnea (when preemies stop breathing for short periods of time while they are sleeping), 
5. His/her body’s temperature must be stable, 
6. He/she must be fed by breast or bottle, 
7. He/she reached a certain weight and be gaining weight steadily. 

Until your small bundle of joy meets these requirements, he/she will have to stay in the NICU for monitoring and care. But once your baby meets all these criteria, and barring any other complications, you’ll be able to bundle your little one up and take her home.

The first glance inside. What is Neonatal Intensive Care Unit (NICU)? What should you be ready to see there?

Basic interpretation of what is the Neonatal Intensive Care Unit (NICU), consists the information that is a hospital department, that provides intensive medical care and specialized nursing care including life–threatening emergencies’ clinical management, both for premature neonates and seriously ill newborns [newborns who have medical complications]. Sometimes Neonatal Intensive Care Unit is called a special care nursery, an intensive care nursery or newborn intensive care unit designed for preemies and newborns with life–threatening diseases. The Neonatal Intensive Care Unit includes an excessive combination of advanced technology and experienced health care professionals to provide specialized care for the tiniest patients. Caring for critical newborns is the priority in Neonatal Intensive Care Unit.

The Neonatal Intensive Care Unit has a deeply medical atmosphere with a big fuss, excessive nervousness, extreme timidness and constant tension. Everything is veiled under the medical terms, everything is inconclusive, everything is prognostic, and nothing is transparent and inclusive to be understood at once, therefore, it is perfectly normal to feel totally lost for the first time you appear there, and to be extremely anxious about this delicate situation, you are involved because of prematurely born baby [your preemie] and medical complications, which correlate with prematurity.

In some Neonatal Intensive Care Units, even the light is just shimmering, producing faint light, all the medical team works under the cover of darkness and quiet and conversations are held only in hushed voices or in whispering. In some Neonatal Intensive Care Units, on the contrary, the light is glittering, all the multicolored buttons of the machines are glimmering, the staff is bustling around, the conversations are loud, and nobody takes into consideration that everything should be done at least half–silently, or with minimum emotions visible in the eyes, and minimum noises, caused by the hurried actions.

Loud machines, plastic incubators, various monitors beeping, and hospital medications’ odors make it neither feeling confident nor feeling comfortable. Tiny preemies are lying hooked to the machines in a fetal position inside these incubators and you could see like their arms and their legs curled up. Various monitors, like pulse oximeters, blood pressure monitors, cardiopulmonary monitors are excessively necessary to keep micro preemie and preemie neonates alive. The whole atmosphere inside NICU can be felt like being almost focused on lighting, sound, and touch. The overall effect of incubators is one of relative calm: an attempt to mimic what babies would experience if they were still safely tucked in mother’s womb.

Currently, at most Neonatal Intensive Care Units, each preemie has his/her own space that would be just his/hers and yours for your stay there – his/her own room. Usually, it is a small room, where the equipment takes up almost all the space, but there is also a little storage space, a sink, and a reclining chair or an armchair to sit near neonatal incubator.

When you first get to the NICU to visit your preemie, it can be overwhelming nervousness and a little confusing. Being at Neonatal Intensive Care Unit for the first time, you may feel excessively nervous, afraid, embarrassed, confused, shocked, frustrated, despaired, and yet yearning to be near your preemie. Coping with nervous tension may even seem impossible for you, especially, if you were told that your small bundle cannot be touched (for preemies, it can hurt to be touched because their skin is not ready for it) and you witness painful medical interventions like intubation, extubation, and blood draws are performed (in those situations, touch is thought to mitigate pain).

It is a normal reaction of your nervous system to feel like a bundle of nerves while staying with your preemie in NICU.

You may first feel as if you have no idea how to handle the situation, but you should know that after three days you will understand what is happening and what to expect. So even if you are feeling lost now, that does not seem that this feeling of disrupted happiness or heartbreak will be with you until your discharging date.

Every unborn baby, medically termed ‘fetus’ is a unique and every birth time is also unique, unrevealed phenomenon. It might be presupposed by the clinicians, but the exact time and date, when it would occur, is almost unpredictable, even including those cases, which are considered high–risk pregnancies, because sometimes it happens, when you come to your ultrasound examination and your clinician whispers several words: ‘You must undergo early induction of labor due to pregnancy complications. You have the placental problems, particularly, placental abruption’ or ‘You are going to be scheduled for urgent cesarean delivery in next two hours, because you are having an uncontrollable high blood pressure right now, that seems surgery must be done without postponing…’, heard as a verdict for your baby, being too small, too weak, too young to be taken out from your womb.

Birth still is associated with perplexity and mysticism, as it has been neither inclusively investigated nor completely elucidated, therefore the scientists understand only single aspects of this process, but how the birth–time correlates with the factors or causes is still unclear, only hypothesis and versions need to be verified are postulated. There are so many definitions of what should be considered ‘preterm birth’, what should be considered ‘full–term birth’ and what should be considered ‘post–term birth’ and how the risks, associated with the birth time should be prevented, minimized or managed. But ‘pre–term birth’ category is the most delicate one as being constantly closely associated with life–threatening emergencies or with life–threatening unstable states and high risks of further complications.

Preemie is another word for an accurate and more delicate interpretation of medical term ‘premature baby’. Baby is considered to be premature if born before 37 weeks gestation (normally, the duration of pregnancy is 40 weeks). Although preemies are babies born too soon are more likely to experience neonatal health problems, they can survive with current technological advancements, new strategies for clinical management of the emergencies and innovative medications. Preemies are not just tiny versions of full–term babies, not even close… They are absolutely different... They are at high risk of neonatal death if are not transferred immediately to the Neonatal Intensive Care Unit. Being there, preemies have a glimmer of hope, a shining sparkle of faith and a unique ability to be alive.

You are always wondering if there was something you could have done to prevent your baby’s premature birth –– or something you did to cause it. Feeling extremely guilty in your soul, every time you are glancing at your preemie, hooked up to countless tubes and cords, understanding that you shouldn’t, every time you are thinking about inevitable fault, which is neither medical nor yours. Counting day after day on your iPhone calendar; hour by hour on your wristwatch and comparing your time aspect with a big clock, hanged on the wall near the medical specialists’ schedule of Neonatal Intensive Care Unit; minute by minute, sitting on a cold white chair near the incubator, where your weak baby is lying suffering from intensive pain, curled up into a ball, without realizing if she/he is asleep or just can’t burst into tears and cry loudly because of all this pain, hard to endure, but being here seems not only a hope but also the chances to be alive and to recover soon, – because out of here your little one is silently sentenced to death.

Counting seconds by seconds after furtive glance at the small curled up bundle of nerves, holding your breath every time you glimpse at your delicate miracle, trying to visualize the beauty of even blush–taupe–dark–blue mixed with purple translucent glittering skin, through which it is sometimes possible to see the blood, circulating through tiny vessels and hiding your tears every time when you see the multivariate scenarios of the following day. Having a preemie puts everything into perspective dimension, because there are two extremes, which are possible to face into reality: losing your small miracle or being given an excessive chance of suffering from endurable pain, but recovering soon without any consequences, which neither could have ever remind about this unbearable past, nor could have entailed the problems for the future.

Your emotions after first visits to Neonatal Intensive Care Unit. How to cope with anxiety and depression while your preemie is in NICU? What can you do for your small bundle of nerves while visiting him/her?

Going back every day, turning the corner to the Neonatal Intensive Care Unit and having your heart break over and over every time you are there, is deeply frustrating and excessively depressing. All your thoughts are focused closely on remembrances about your past, which you are constantly analyzing in despair trying to reveal the moment of your fault, trying to find the cause, which you lost to control, the life–altering moment, which you suppose could have been prevented, if you had been more accurate, if you had attended the clinic every week, if you had phoned your doctor to schedule an appointment every time you had noticed something wrong… Multiple scenarios starting with: ‘what if’ and concluding with inconclusive versions. You can’t concentrate on anything else except the questions: ‘It is my fault…The only one who is guilty in my little one sufferings is me’. These thoughts bring nothing more than overwhelming emotions of excessive shame and intense guilt. The latter is supposed to be a direct cause of anxiety and depression which are in close correlation with mentally visualized stimuli, as every thought interconnected with your past experience on a cognitive level. You can feel not only lost but also extremely numb, as the whole situation brings back so vivid mixed emotions and memories. First things you constantly visualize are the timeline (when the situation occurs), the place (where it happens) and the visual stimuli (what you have seen). Every visualization is closely associated with your emotional experience, particularly, with your basic emotions (what you have felt in the moment when something went wrong and immediately after it has happened) and your rethinking of the situation, framed with emotions after rethinking. Consequently, you can change your emotions from negative spectrum to neutral or positive.

To start with, you should understand, that a thought that it is your guilt, is just a thought, and the feeling that your preemie might face the death any moment, is just your thought because staying at Neonatal Intensive Care Unit increases the chances of successful coming home with your baby.

Eight things you should know that happen to you when your baby is in the Neonatal Intensive Care Unit

1. Emotional shock and panic. Because everything had changed in a heartbeat: several minutes ago, you were embracing your small bundle of joy curled against you tightly, glancing at his widely opened dark blue eyes. Everything was surreal. You controlled everything. After that, you glimpsed at your doctor’s eyes and heard that your baby needs intubation and other medical interventions. That seems now, you control nothing.

2. Extreme nervousness. Everything seems to be surreal. You are crying nonstop. Your beloved is crying. Even your baby is trying to cry being taken away from you. The room is full of people ― you can count three doctors, then eight other nurses and three respiratory therapists. They have just wheeled in the incubator and got it warm. They are discussing their plans for what everyone is going to do. You won’t be asked for permission to perform the medical interventions. You are all bundles of nerves. And you can’t alter the situation. 

3. Anxiety. Because you are thinking that you may lose your small bundle. Because all these medical interventions cause too much pain and suffering for your little one. Because you are forced just to watch everything without uttering a single word. You feel extremely nervous and an intense follow of uncomfortable feelings slide through you, forcing you to suffer from nervousness and extreme anxiety. Your anxiety might grow, it might overwhelm. It suffocates you before you have the chance to speak, and it twists and bends your insides, making you feel nauseous. There is one basic false impression that anxiety is just something that can be stopped by comforting words. Anxiety never stops to intensify its attacks, never stops to wrap you from inside and indicate that your life is worthless. Anxiety is often based on disproportional thoughts, irrational fears, and phobias. Having anxiety can also increase the likelihood of having panic attacks. Sometimes, these feelings, thoughts, and reactions can grow and consume you – until you are a breathless body of a panic attack. At times it hurts to breathe, to think, to move.

4. Depression. Because you were told not to touch your small bundle. You were explained that it can hurt to be touched because her/his skin is not ready for it) and you witnessed painful medical interventions like intubation, extubation, and blood draws were performed (in those situations, touch is thought to mitigate pain). You can’t be with him/her. You must follow someone else’s rules with your baby–the baby you carried and loved and named. But you can just glance at your little one. And burst into tears because of despair. And maybe the charge nurse will feel sorry enough for you that she lets you hold her for a few minutes.

Depression is not a choice. Depression is one of the most helpless and frustrating experiences a person can have. It’s sometimes feeling sad, sometimes feeling empty, and sometimes feeling absolutely nothing at all. There are times when depression can leave someone feeling paralyzed in their own mind and body, unable to do the things they used to love to do or the things they know they should be doing. Depression is not just a bad day or a bad mood and it’s not something someone can just “get over.” Remember, no one chooses to be depressed.

Depression starts with sadness. The sadness is overwhelming; then the numbness joins in. The little things may cause depression — the small, reoccurring moments that unknowingly and secretively add up to something much greater. These tiny bouts of sadness that you feel, if not resolved, end up coming back from the dead. They find a way to haunt you when you’re in your most vulnerable state. More than being overcome with sadness, depression is a feeling of hopelessness and a loss of purpose in one’s life. There are people who consider depression like it’s something deep, and special, and so wonderfully tragic, and maybe it is all those things to some extent. Depression is everything and nothing. It’s a mixture of sadness, anxiety, self–loathing, hopelessness and feeling nothing all at once. Having all of those emotions inside of you all at once is a special kind of hell and the battle that you deal with on a daily basis is exhausting.

5. Anger. Because you are the mom and you want to hold your small bundle tightly. But you aren’t in control of this situation. And your little one can’t tell you if he/she is hurt or is sad or lonely. So, you can’t help. You can’t even comfort your small bundle. Even a little. Just glance at him/her. It makes you angry. Angry enough to lose self–control and burst out crying loudly. Anger is a common reaction to the stress. Be careful it doesn’t take over your life. Both anxiety and depression can lead to getting frustrated more than normal, as well as losing your patience more easily. Anger can overwhelm even the most self–reflective and self–aware person. When you are flooded, your pulse races and your limbic system takes over, making rational thought almost impossible. It’s important to understand that anger is often covers up more vulnerable feelings such as embarrassment, sadness, and hopelessness.

6. Guilt. Guilt makes all your failure–related remembrances so vivid as everything you thought about has just happened to you. Guilt makes you a person, who would love to categorize this as just another thing you thought too much about and the scenario you played out didn’t come true before your eyes. Guilt makes you overanalyze things or overthinking them. You want to dismiss this little thing that is overcoming your thoughts, but it is impossible for you. Grief whispers: “This is wonderful, but it’s too wonderful for you. There is no way this is going to last”. Thoughts that you are worthless just add to your guilt additional destructive emotional spectrum. The guilt is intensified by your thoughts. Guilt makes all your failure–related remembrances so vivid as everything you thought about has just happened to you. Guilt makes you a person, who would love to categorize this as just another thing you thought too much about and the scenario you played out didn’t come true before your eyes. Guilt is frequently viewed as a virtue, as a high sense of responsibility and morality. It is absolutely essential to reveal the truth about intense guilt – the truth is that guilt is the greatest destroyer of emotional energy. It leaves you feeling excessively exhausted both emotionally and physically in the present by something that has already occurred. Guilt is always entailed by the emotional exasperation, moral emptiness, heartbreaking experience, or insecurity.

7. Disrupted sleep patterns. Insomnia (inability to sleep). Because how can you sleep being in such terrible situation? How can you sleep while your baby is struggling to stay in this world? How can you sleep if you can’t help your little one? How can you sleep remembering all these IVs inserted into tiny vessels? You can’t fall asleep because your mind is so wide awake and buzzed. Your mind doesn’t give a damn about you. And just like that, you wake up, exhausted from the night before. You turn up late, or you miss meetings in the morning because that’s the time when you start to fall asleep – and you refuse to let anything get in the way. Guilt consumes you. You feel worthless, ashamed, scared, hopeless, and cancel on anything that makes you anxious, and everything makes you anxious and annoyed, even people on the train chatting on their phones. Whenever you are present in your hobby–class, or at a meeting, it takes you tremendous effort and courage to cope with intense guilt and anxiety. You feel like you have conquered something until you realize that you are putting in so much effort for something that requires minimal effort for others, and starts to despair’.

The emotional detriments of insomnia are an endless cycle of guilt, tiredness, and hopelessness. Trying to escape drains both willpower and reputation. Reputation, because insomnia is not an excuse, and neither is depression. Wanting to sleep is seen as being extremely exhausted. Not sleeping earlier is seen as a mismanagement of time. There is no easy solution to sleeplessness because the causes are so diverse. This is a reality of what insomnia can be, and the hidden emotional costs of this debilitating condition.

You experience not just sleepless nights, but usually, the whole spectrum of anxiety attack: increased heart rate, it’s over-thinking, it’s muscled tense up and a heightened sense of reflexes, it’s difficulties with breath, it’s a loss of breath, it’s suffocation, heartache, panic attacks, headaches, etc. It is intensive, dynamic, durable and recurrent because anxiety disrupts sleep patterns on prolonged, sometimes permanent basis.

8. Hope. You hope you never let pain or sufferings turn you into someone you are not. You hope you have let go of all the things which have hurt your soul. You hope you have managed to figure it all out, the ins and outs of life. Because, every day, something is new, something is better. And there is the discussion of “when he/she comes home” and “he’s/she’s doing better”. Because it does get better. And your small bundle of joy hopes that he/she is loved hard!

What can you alter for your small bundle of joy while he/she is staying in the Neonatal Intensive Care Unit?

1. Ask questions about what is going on. You should not feel embarrassed or numbed when asking questions.

It is normal to ask the medical team and nurses questions, and lots of them. If you don’t understand the conversation your neonatologists are holding, ask a question. If you don’t understand something that is happening, ask a question. If you don’t understand the medical terms, ask a question. When you feel that something is inconclusive, ask a question. When you feel concerned about something, ask a question. When you feel something is wrong, ask a question. When you are nervous about something, ask a question. When you want to discuss issues about your baby with neonatologists or any other specialists, do not hesitate. That is your baby and you have the right to know every detail about what is going on.

2. Write everything down. Write down all the answers, recommendations or proposals you received from your neonatologist, pediatrician, pharmacist or neonatology nurse. 

Keep a journal with you in the room and write in it every day. Sooner, you will be able to look at that journal and see how far you, and your baby, have come. You will want to remember the answers to your questions, medical interventions, medications which were recommended, medications which were given, medical complications after the medications, the nurses and doctors that you loved, the days when everything was wonderful, the days of utmost frustration, the moments when you were astonished, the moments you were in despair, all of it.

3. Take photos of the most frustrating and the most wonderful moments and make your preemie’s photo album. 

Every frustration moment should be followed by one wonderful moment in your photo album. Leave some space to write commentaries in a style of a blog through the eyes of your premature baby and your own commentaries below. Write down all the triumphs and tribulations of your little one through the NICU journey: from the moment your preemie entered the world barely breathing with widely opened dark blue eyes till the moment you left the NICU. First time your little one opened his/her gorgeous eyes, first time your little one burst out crying, first time he/she curled up his/her lips in a smile, first time he/she curled his/her little fingers and little toes, first time your bundle of joy curled up, first time you could cuddle him/her up tightly, first time you could wear him/her clothes, etc. This style of feelings’ expression in writing the commentaries and depicting moments will show you that the miracle you are continuing to witness is synchronized in time aspect, furthermore, the more time passed, the more wonderful your preemie becomes.

4. Celebrate small inspiring moments!

After taking the photos, even if you were gently fondling your baby and then suddenly tilted his/her head down and covered your face with your hand in a flood` of tearful emotion, celebrate this small inspiring moment! If you noticed that your baby was casting glances around at all the sights and sounds – celebrate this small inspiring moment! If your baby is on a new breathing machine and it means he/she is one step closer to finally getting this tube out – celebrate this small inspiring moment! If your baby finally had his/her annoying breathing tube taken out – celebrate this small inspiring moment! If you touched your baby’s nose, fingers, wrists, toes, ankles, for the first time – celebrate this small inspiring moment! If you took your baby cuddled up in your hands for the first time – celebrate this small inspiring moment! If you finally got to hold your baby for the first time – celebrate this small inspiring moment! If you embraced your baby for the first time – celebrate this small inspiring moment! If your baby could breathe without breathing machine – celebrate this small inspiring moment! If you fed your baby with a bottle for the first time – celebrate this small inspiring moment! If your baby sleeps calmly – celebrate this small inspiring moment! Despite your and your baby’s journey won’t be easy nor smooth, but what NICU stay is.