This article is intended to help mothers of preemies understand what they will be going through and what to expect in the NICU. It will also give an overview of the type of equipment you may have to get used to as well as an understanding of your rights as the mother of an NICU baby.
It is very difficult to explain what life is like for a NICU parent. It is utterly surreal. Once you enter the NICU, it’s like you enter a bubble where normal rules don’t apply. This can be very difficult to get used to, and I’m hoping to answer some of the questions you have to make the experience a little bit easier.
This article is about families.
Welcome to the club where membership is anything but free. The toll having a preemie takes on a family is multifaceted. The emotional, physical, financial, and other burdens of having a preemie in the NICU can be overwhelming…but parents know that this is something they have to see through, for the health and well-being of their child.
No parent wants to be facing the NICU, particularly with a child born too soon. It can be very difficult to adjust to the way the NICU does things. Atop that, many parents are dealing with feelings of guilt or betrayal. Women can feel betrayed by their own bodies, and both parents can feel like maybe they did something wrong.
You didn’t do something wrong. The fact is, there may be a lot of reasons that women deliver their babies too soon, and we don’t know all of them by far. There is no sense tearing yourself apart over ‘could have, would have, should have’ when you need to keep your energy up to help your baby. You may never have the answer to why your baby was born early, but you have to get through this, and you will. It’s going to be hard enough without you tearing yourself down…and I know it can be difficult, but for the sake of yourself and your baby, please go easy on yourself. If you can’t take care of yourself, you can’t be there for your baby.
This article is about the NICU.
The NICU, as I stated, is a very strange place to be. Eerily quiet except for various monitors and alarms going off with no warning, sedated babies that need help to survive, families visiting that don’t know what to do or say, rotating nurses with different personalities that may or may not mesh well with your family, mothers, fathers, and siblings who can’t hold their newest addition, but can only hold their hands through the portal of an isolette. At 3pm there is a quiet but determined air about the NICU, but at 3am it’s hard to not realize that everyone around you is asleep, and it’s just you and your baby in the still, dark night. It may be the only time you have any real sense of privacy, or it may be the only time you can get away from your obligations to the rest of your family to visit your baby, but late nights in the NICU give you time to dwell on your baby and your emotions. Sometimes the only thing that helps is touching your baby, no matter how little of them you can actually reach without dodging wires, probes, and catheters.
This article is about your baby.
You’re a parent, you’re in it for the long haul. Your baby is fighting to get better, and you watch them struggle, feeling helpless. At one, two, or maybe even six pounds, your tiny baby is doing a difficult job and it’s wearing them out. Every day you worry that the scale is going to tip, and your baby’s fight to get better will be overwhelmed by how hard it is. Until you walk out of that NICU with your baby in your arms, you have to stand by and let professionals try to make life easier for one of the smallest and bravest people you’ve ever met.
It’s tough for you, and it’s tough for your baby.
Know that if your baby is premature, the NICU is the best possible place for them to be. NICU staff are highly trained to understand the complications that can occur with premature babies. They are also there for you, to help you through this difficult time. Never underestimate the support you can receive from the NICU staff. These people are trained in compassion, and if you need help or support, you can turn to them for it.
Learning the ropes.
There are rules in the NICU, and though some of them vary from hospital to hospital, there are some that are universal.
Germs stay outside – the last thing any parent wants to hear is that their baby caught a cold or an infection while in the NICU, potentially harming their baby or prolonging their NICU stay. To that end, wash your hands thoroughly because it’s not just your baby you’d be putting at risk if you didn’t, infections have a nasty habit of bed-hopping in the NICU because the babies can be extremely fragile. Also, if you think you are coming down with something, it might be best to stay home and wait it out. If you can, send someone else in your place to spend time with your baby. If you have to stay at home, feel free to call the NICU for regular check-ups with the nurses to see how your baby is doing. Take good care of yourself so that you can get better as quickly as possible.
It’s not that they don’t like children – Many NICUs have policies that are not very friendly to other children in the family. It is perfectly understandable that you want your child to meet their brand new sibling and understand what is going on, but kids can be a big carrier of germs, and if left unsupervised can wreak havoc in the NICU by playing with equipment or even just tripping over it. They don’t mean to, but it happens. Also, young children tend to get bored in the NICU very quickly, which can lead to problems or you having to leave early because your child needs to go home. If you have to bring another child, it is best to bring another family member that can stay with them and watch them so that you can spend time with your baby. If the child needs to leave the NICU, the person you brought to help can take them for a walk around the hospital or a trip to the vending machines, or just down to the lounge to check out the magazines and Lego table.
Respect the invisible boundaries – you may be tempted to ask about the condition of another baby in the NICU because you care. While this is understandable, the staff cannot give you information about other babies. If you see the family come in, you may want to reach out to them, but don’t take it personally if they don’t seem interested. The NICU isn’t a very private place, and with all the upsets that families can face with their baby in the NICU, they’re probably craving some time alone with their baby. Just because there are no curtains separating the beds doesn’t mean the family isn’t trying to spend private time with their little one.
Twins are adorable, but they’re also twice the worry – there is always a baby (or two or three) that has become the NICU celebrity for the moment. Either they’re a multiple, they impressed the staff somehow, or they just have a great personality, it’s always something. Most NICUs have their little celebrity, which is great…but it can be trying on the family. It is even more important to respect their privacy in this instance.
Don’t be afraid to ask – if the nurse is messing with the monitors, putting something new in the IV, starting a feeding, or doing something else with your baby that confuses you, don’t be afraid to ask questions about what they’re doing and why. Doctors sometimes don’t spend enough time with families for them to learn the ropes of the NICU, but nurses are very used to being asked about their work, and if it’s about your baby they will typically be up-front and honest with you about what they’re doing and how it helps your baby. The best place to learn what a doctor’s orders actually were and why is from the nursing staff that carries them out.
No smoking, please – If you do smoke, please wash your hands thoroughly before coming into the NICU. Unfortunately, there is little you can do to get the smell off your clothing, and cigarette smoke is a lung irritant that is sometimes deadly, particularly to small babies. You may want to try the patch even if you can’t quit, for the several hours you’ll be spending in the NICU per day so that you don’t have to leave and come back, trailing in the smell of smoke. Commit makes lozenges, Nicorette makes gum, and there are other methods you can try to curb your smoking while you’re around fragile babies.
Ask about donations – feeling helpless? Maybe you can make a difference in the NICU. Some hospitals accept donated breastmilk from mothers who were patients at the hospital because they have access to your records. Other hospitals are in need of blankets or isolette covers or other durable goods. While you can’t be expected to help out when your baby is in need, you can contact a sewing, knitting, or quilting circle or vow to help afterwards to thank them for taking such good care of your baby. Some hospitals send home quilts with the family when they bring their baby home, and it is very sentimental to the family. A tie quilt is easy to make and much appreciated.
I’ve never seen so many machines…
NICUs have a wide variety of equipment for their patients. Some of it you may see at your baby’s bedside, some of it you will see elsewhere. This list should help you understand what these machines are there for.
IV’s – An IV is placed so that your baby can get the fluids they need to prevent dehydration. It is also the gateway for other drugs or substances your baby might need, like medication or lipids (fat). It is important to have a ‘port’ open so that if your baby needs medication quickly, there is already an IV in place. Even if it isn’t attached to anything but is only heplocked, IV’s are pretty routine for any NICU baby.
Bili lights and biliblankets – The blue lights with the baby sunglasses are a common sight in an NICU. Preemies are at high risk of developing jaundice, and the bili lights help their bilirubin levels come down, preventing potentially serious complications like brain damage.
Heating beds – The flat, open beds under a heat lamp are common for younger babies who need a very controlled environment to regulate their body temperature. It also offers easy access for the professionals who will be working with your baby.
Isolettes – A plastic shell with a small bed inside and holes for wires and tubes, also called an incubator, they have ports on the sides to allow access by the parents or professionals, but are enclosed and typically heated to help your baby maintain their body temperature. More fragile babies can’t be outside the isolette for any real period of time because they can’t maintain their body temperature. When they get older, you will be able to hold them.
Monitors – Most monitors in the NICU monitor pulse, respirations, and sometimes temperature or blood pressure. Some also have something called a pulse oximeter (or pulse ox for short) so that they can tell how oxygenated your baby’s blood is. Some have the pulse-ox separate from the other monitors. You can tell the pulse ox by the way it looks. It will have an output that should have a number in the 90s if your baby is doing well. If your baby is not doing well, your doctor or nurse will talk to you about them ‘desatting’ and your baby will need to be on oxygen or a ventilator to help them get the oxygen they need. The pulse ox lead is wrapped around the hand or the foot and attached with velcro typically. It has a red light that shines into the hand or foot. Other monitors will have tiny blood pressure cuffs and/or leads attached at the chest.
Oxygen tanks – lots of preemies need oxygen to keep their oxygen saturation levels at normal levels. Oxygen travels out of the tank at a regulated rate and into the baby’s nose via something called a cannula. It is a long, clear, plastic tube with two prongs that wraps behind the baby’s ears and is typically taped in place. The two prongs go in the baby’s nostrils, because newborns only know how to breathe through their nose.
Ventilator – if your baby is having a difficult time breathing, they may need to be on a ventilator. A ventilator breathes for your baby. Sometimes it only assists your baby to breathe, and sometimes it has to take on the full job. If your baby is on a ventilator, your baby will have a respiratory therapist who monitors the equipment and your baby.
High Frequency Oscillator (HFO) – different than a ventilator, it is used for babies who have particularly fragile lungs. An HFO works by pressurizing the lungs and then shaking small amounts of air into and out of them. Typically, an HFO works at 600-900 shakes per minute. The benefit of using this machine is that it doesn’t stretch and strain the lungs because they’re in a constant state of openness.
High Frequency Jet Ventilator – similar to an HFO, but the principle is different. HFJVs work by pushing air into the lungs at a highly controlled and frequent level.
Continuous Positive Airway Pressure (CPAP) Machine – Another machine to control how much oxygen your baby is getting. However, CPAP works in a different way. Your baby breathes on their own, but the constant pressure of air and oxygen opens the lungs so that your baby can breathe easier. The CPAP is also a reminder to them to breathe on their own, preventing apnea.
Oxygen hood – some babies don’t need all that breathing equipment any more but still need oxygen. Since they can’t breathe room air yet, they are sometimes placed in an oxygen hood. An oxygen hood is a plastic hood that goes over your baby’s head with plenty of room inside for them. The oxygen level inside the hood is controlled so that your baby gets the amount of oxygen they need.
In most hospitals, oxygen is available through the wall, so all you see is something called an oxygen blender. This is the part of the system that controls how much oxygen your baby is getting above ‘room air.
Nasogastric (NG) tube – a tube inserted in baby’s mouth or nose that carries food to the stomach. This is often used when baby doesn’t have the energy to eat as much as they need to, or if they’re having problems with reflux as a slower infusion of food leads to less difficulties with spitting up or apneic or heart episodes.
Breastfeeding
I think it’s important to address breastfeeding as it relates to having a preemie. It’s much more difficult to breastfeed when your baby is a preemie for multiple reasons, not the least of which being that when you’re exclusively pumping, exhausted, and stressed, it can be hard to keep your supply up.
I want to mention something about galactogogues, because not enough women know about them. Galactogogues are herbs or medicines that help milk production. If you find that your supply is faltering, please don’t stop pumping. Instead, try using a galactogogue like fenugreek, brewer’s yeast, or mother’s milk tea to boost your supply. Pumping regularly can also help milk production. I recommend renting a hospital grade electric pump. Either your hospital or your local LLL (La Leche League) can help you get ahold of one. I also can’t understate how much help and support you could get from going to LLL meetings.
Breast milk is particularly important to premature babies for several reasons. One is that it is easier to digest than even the most easily digested formula. Two is that it lowers your baby’s risk of infections, and preemies are at higher risk of infections like RSV, necrotising enterocolitis, staph, and other potentially serious conditions. You pass your immunity to your baby through your breast milk.
Take care of yourself, and let others do their part.
It is important to remember to take care of yourself. You need to eat right, take your prenatals or a multivitamin, and rest so that you don’t get run down or sick.
Some other things that are important:
Setting up a pumping schedule.
Learning to lean on friends and family for help with things like small errands, wholesome meals, babysitting, helping around the house, or giving you a ride to the NICU and back. Friends and family can be a great source of support during this difficult time, and they may feel helpless, too. Don’t feel bad for leaning on them in your time of need. You would do the same for them.
When can my baby come home?
Most doctors give the same guideline: expect your baby to come home around their due date. Some babies go home before, some after, but the average is around the due date. I know this can be frustrating, because you want your baby home more than anything, but trust me when I say this…this is a short time in your child’s life. It seems long, and draining, and horrible, but once you get through it and into ‘normal’ life again you’ll realize what a blip this is. It doesn’t make it any less painful or significant, but it does help to put things into perspective.
I know. I’m the proud mother of 6 NICU graduates.
This article is part of my pregnancy series. For more articles on pregnancy, please see my content producer’s page. I also have articles on childbirth and homebirth.
