Your pregnancy test is positive. Mazal tov, you are going to have a baby! Whether your journey to pregnancy has been quick and easy or it was accompanied by pain and struggles, the novelty of carrying your baby and dreaming of its arrival is real. You envision the simcha, excitement, sleepless nights ahead, and all the milestones your baby will achieve.
So you wonder…. What happened? How did my baby end up in the neonatal intensive care unit (NICU)? Whether you delivered your baby prematurely or your baby was diagnosed with an abnormal finding during pregnancy, you have found yourself in the position of NICU parent. Babies can be admitted to the NICU for various reasons. Some are born prematurely which is before the 37th week of pregnancy, and others have been diagnosed with minor or major abnormalities during the pregnancy or after. Some babies go to the well-baby nursery and are then admitted to the NICU for various medical concerns or events.
The NICU can be a scary place. It’s not what you envisioned physically or emotionally. Your stress and hormone levels are high, and the fear is real. The layout is different from the postpartum unit with the cute well baby nursery nearby. The NICU appears more medical, serious, and intense.
Know that your feelings are valid. It is normal to be worried, afraid, and emotional. But, also know that the NICU team is on your side, and they are your baby’s advocates. The staff is trained to diagnose, react, and respond to your baby’s needs and issues. The NICU team is comprised of many members including healthcare providers such as a neonatalogist (doctor trained in newborn medicine), nurse practitioner (NP) and physician assistant (PA). The team also includes registered nurses (RN), nutritionists, physical and occupational therapists (PT/OT), respiratory therapists (RT), social workers, lactation consultants, child life specialists, chaplains, and others. Every person on the team is important and has their unique role.
Getting to know your baby’s nurse is important as the nurse is always at the baby’s bedside and serves as eyes and ears for your baby. The nurse does all the hands-on care for your baby and is a critical component of the medical team. Your nurse should ask your name and verify you are the parent when you visit and provide you with education and updates on the baby’s status. The nurse will usually give you general updates, but for specific information about bloodwork or testresults, you should inquire with the provider. Updates and information about the baby would never be given to your visitors unless you explicitly agree to this.
Typically you will be encouraged by the nurse to be involved in the baby’s care from birth onward. When babies are born extremely prematurely (as early as 22 weeks!), hands-on care may be minimal, but with time, opportunities for parental involvement increase. If your baby is in the NICU for a lengthy stay, you may become very close with your baby’s nurses and begin to prefer or favor some nurses over others. See if your NICU allows for consistent nursing as this provides optimal continuity of care. It allows a group of nurses to become experts on your baby’s normal status knowing quickly when things seem abnormal or different from baseline.
If you have concerns about your baby’s care or need to escalate issues beyond the bedside nurse, ask to speak to the charge nurse. The charge nurse manages the nurses and babies for that shift and can help resolve issues, offer clarification, give assistance, make decisions, and more. There is a delicate balance regarding patient advocacy that you need to keep in mind. While patient advocacy is critical to ensure safety and the best outcome for your baby, it should be done in a calm and appropriate manner. While we all know the squeaky wheel gets the grease, those who are too loud or disrespectful may sour the situation and make matters worse. When parents frequently complain, constantly ask for new nurses, or have other difficult or irrational demands, the nurses may choose to not return to care for your baby another day. You may develop a reputation of being a difficult parent turning away caregivers, nurses, and people on the medical team. The same is true for parents who push the boundaries on policies and visitation. If the unit does not allow children to visit, please don’t try to pass your 11 year old child as a teenager- the staff knows. If masks are required, please wear them- it protects babies and staff from getting sick. If you are sick with congestion, cough, or stomach upset, please don’t visit and say it is allergies- you are putting your baby and others at risk. If the unit does not allow recording devices in the baby’s room, please do not sneak one in. Having a positive approach and relationship with your baby’s team as well as escalating issues in an appropriate manner will go further and be more effective than coming down harshly and throwing a tantrum (Yes, it happens!).
Ups and downs are part and parcel of the NICU journey. A baby may take four steps forward and two steps backwards. This is common and does not always mean it is a disaster, but yes it is stressful! Asking questions, staying informed of changes, progress, and setbacks are allcritical, and this can be easily tracked by taking some quick notes every day or so on your baby’s status. Write down questions in a notebook as you think of them and ask them to the nurse or provider when you are present. If you are able, be present during daily rounds when the larger group of team members discuss the history of your baby’s stay, current issues and concerns, as well as the plan of care for the shift and coming days. This is an important time to ask your questions, and you can learn a lot about your baby during these informative discussions.
If you are not able to be present during rounds, you can ask for a status update when you come in. If you are unable to visit, it is always important to call and check in once a shift. If you won’t be calling or visiting because of Shabbos, you can let the nurses know in advance for situational awareness. Nurses notice which parents visit and are involved, and which are not. It makes a difference knowing that you are checking in on your baby even if it’s a very brief call. Sometimes phone calls can be an interruption in your baby or another baby’s care, so if your nurse is unable to speak at that time, please ask when it is a good time to call back. Generally, nurses are busy with the babies every three hours at minimum, and some babies may need hourly or more frequent interventions.
Aside from being present, calling for updates, and advocating, you can be involved in your baby’s care by pumping breastmilk. Breastmilk feedings provide optimal nutrition to your baby and it is something only you as the mother can provide your child. While alternate options are available for feeding such a donor breastmilk (yes, there is a kosher donor milk bank in New York) and formula, your breastmilk is exclusive and the best option for your baby. You can also do skin to skin care, also known as kangaroo care, by holding your baby on your chest. This helps regulate the baby’s temperature, heart rate, breathing, oxygen and pain levels and improves bonding between you and the baby. Lastly, you can strive to eat well, stay hydrated, and rest as much as you can to ensure you are bringing your best self to the NICU as a parent and advocate.
Non-Jewish nurses may find the Jewish calendar and minhagim strange, and giving a brief explanation may ease concerns or judgements the staff has. Non-Jews are aware of the major yamim tovim such as Rosh Hashana, Yom Kippur, and Pesach but are not educated regarding our other special days. You can tell the nurse or medical team that you won’t be visiting or calling the next two days because of so and so holiday. Staff may not understand why you aren’tgiving a baby name to your son; provide a short explanation about waiting until after the circumcision to name your little boy. If you are comfortable, you may choose a nickname for the baby boy as a temporary name for the staff to use in the meantime. To explain the need for help passing the baby from one parent to another, you can briefly state, “I am unable to pass things to my husband at this time. Can you please hand the baby to him for me?” The same is true for pushing a wheelchair or other things that may seem odd to non-Jewish staff members. A little education can go a long way in such situations to minimize judgment and chatter among the staff.
Much of the NICU journey requires patience and time. Patience for the baby to grow, to thrive, to wean off medications and medical support, and to work towards discharge. If the baby is not ready to progress with feeding, it won’t. If the baby wants to lose weight, it will. There is a certain amount that the medical team can support and encourage for the baby’s progress, but the baby’s timeline and readiness can not be forced. It just takes time, and the baby is our boss!
As you wait for your baby to grow and thrive, you can receive support from other parents in your NICU or from external support groups. Just remember no two cases are exactly alike, and one baby’s journey may be quite different from yours even if the diagnosis or gestational age is the same. WeeCare is a frum organization for parents of preemies, and the founders are former NICU parents. They can connect you with others in your situation, and they offer a range of services. Other organizations including Chai Lifeline and Highway of Hope can help you navigate your baby’s diagnosis and journey. You can also stay involved and in a positive mindset by making a scrapbook to highlight your baby’s milestones. Keep that little hat and diaper- you won’t believe how fast your baby grows!
Some of the goals of the NICU stay is for your baby to grow, be medically stable, maintain their own temperature, and consistently gain weight. Some of these issues can hold up discharge, but we would only want your baby to go home when it is determined safe and appropriate. A push for an early discharge may mean a visit to the emergency room in the coming days or unnecessary concerns at the pediatrician’s office.
Most NICUs are overflowing with babies and have no need to hold onto your baby for more time than necessary. We are on your side and want your baby home with you as soon as possible. Discharges are big celebrations, and many nurses will cry emotionally when a long-awaiteddischarge happens. We miss the babies when they leave and are ecstatic to see their progress. Sending a follow up card or photo in the months after discharge is very encouraging for the NICU staff. We celebrate and get excited for you and your baby’s progress, and we get encouragement and chizzuk to continue doing our great work for other babies.
Mazal tov on your new baby! Wishing you much hatzlacha as a NICU parent and may the journey be smooth and easy!
The NICU staff uses a lot of medical jargon and acronyms. Here are some basics to get you started:
Apnea – when a baby stops breathing. This is commonly seen in premature babies, and often babies just need some touch or stimulation to remind them to breath again. If that doesn’t work, caffeine can be given as a medication to help them out.
Brady – short for bradycardia which is a dip in heart rate usually below 100 beats per minute. This is something nurses and the medical team are constantly monitoring.
CPAP – continuous positive airway pressure. This is a device to help your baby’s lungs stay open and avoid collapse. Desat- short for desaturation which is a drop in the baby’s oxygen perfusion to the body. Nurses and the medical team will also be observing this number closely as well.
ET Tube – endotracheal tube. This is a tube that goes down a baby’s nose or mouth into their lungs to assist with breathing. It will be attached to a ventilator (respirator).
Gavage Feeds – feeding the baby via gravity with a tube. This tube will be inserted into the baby’s nose (nasogastric (NG) tube) or mouth (orogastric (OG) tube) and deliver food straight to the stomach. Infants will be fed this way until 34 weeks at minimum and usually longer as they learn how to feed from a bottle.
Giving Report – the process of nurses and other medical team members handing off information about your baby’s history, current status, and plan to the oncoming shift. Please avoid calling your nurse at this time as the handoff should be done in a quiet and focused manner.
Isolette – incubator. This is a special bed that provides heat, humidity, and quiet to allow a baby to stay warm and mimic the environment during pregnancy.
Nippling – bottle feeding. A bottle is usually first offered when a baby hits 34 weeks gestation as that is when they begin to develop their suck and swallow capabilities.
NPO – nothing per oral. This is when we are not feeding your baby by mouth or a feeding tube, and nutrients or hydration is given via IV.
PDA – patent ductus arteriosus. This is an opening in the blood flow pathway from the heart that may cause shunting of blood from one chamber across to the opposite chamber. In babies born at term, this duct closes on its own usually within 24 hours of birth and does not cause issues. For premature babies, this duct may need to be closed with medication or with surgery.
PICC Line – intravenous (IV) line that can remain in place for a few weeks. It is more stable than a regular IV and can deliver higher levels of nutrition to your baby.
Preemie – premature infant. Infants are considered premature if they are born before 37 weeks gestation. A full term pregnancy is 40 weeks. The severity of the baby’s status increases the earlier they are born. Some states in the USA, such as New York, offer resuscitation as early as 22 weeks gestation.
ROP – retinopathy of prematurity. This is an eye disease prevalent in premature infants and can be affected by an increase in oxygen needs. Premature babies will have eye exams to check their vision during their NICU stay.
Sepsis – infection. Our babies can’t tell us when they are not feeling well, but subtle signs they show include apnea, bradycardia, lack of energy and responsiveness, and a decrease in their temperature.
Thermoregulation – process of keeping the baby in the best and optimal temperature range. This is critical for growth, development, weight gain, and the baby’s overall health. Babies will be placed in beds such as isolettes, warmers, cribs, and bassinets. The choice of bed depends on the baby’s temperature status, gestational weeks, surgical status, and medical needs.
TPN – total parenteral nutrition. This is IV nutrition that is given to your baby and helps with their growth.
Author: Shevi Rosner, DNP RN
Shevi has been working as a nurse in New York Presbyterian Children’s Hospital since 2007 and is dual certified in pediatrics and neonatal intensive care nursing. Her doctorate in nursing research focused on early breast milk expression for mothers of preemies. She is the former president of the Orthodox Jewish Nurses Association and is a volunteer for the Academy of Neonatal Nurses.
