Your baby will be cared for by excellent doctors, caring nurses, respiratory therapists, physical therapists and more. By default, though, parents are no longer the primary decision makers, as they would be when bringing baby home after a typical full-term birth. The NICU staff who step into that position is highly trained and very competent. They’ve done this many times before and they save lives. Yet, the limited baby-bonding and the loss of control can feel heartbreaking.

We encourage you to be active in your child’s care in the NICU. Advocacy means looking out for someone, helping protect the interests of someone who can’t fight for themselves. It will mean learning about your baby, and speaking up for him or her. You will not be the NICU expert, but you can give your baby a voice, through his loving and nurturing parents. In your important role as parent advocate, keep in mind that proper communication and respect with hospital professionals are key while your baby is in the NICU.

So, how can parents balance the roles of caregiver, advocate and communicator in the NICU? Below are some tips to guide you. Each one is incredibly valuable!

• First, you officially accept your role. Nobody is going to give you a fancy business card or an official badge to wear, but in your mind, once you take on this job, you’ve taken the first step. You now see yourself has having an important place in the NICU, even if nothing has officially changed.
• Know yourself. When in crisis mode, a person can sometimes act out of character or lose sight of what’s right. That’s aside from being postpartum, sleep-deprived and managing the household. So, before expressing your thoughts or questions in the NICU, take a deep breath and prepare yourself. Think it through and if you’re not ready to present it in a calm, polite fashion — especially if it can wait — give it 15 minutes or even until the next day.
• Remember self-care! Yup, taking care of yourself so that you can be there for your baby is one way effectively be a good caregiver and advocate.
• Be observant. Notice procedures, numbers, terms and baby’s reactions. Get to know your baby, the meds, cares and how things are done. This will equip you with baseline information and help discussion with the medical staff.
• Don’t be hesitant to ask questions. It’s also important to speak up if something doesn’t seem right. Be respectful of the staff, and if they are clearly busy or otherwise unavailable, don’t start with your million-and-one questions, because you may be seen as a source of frustration rather than an appreciated team member. You can ask a nurse when a good time to speak if they’re busy. But do ask! Inquire in a nonconfrontational manner that clearly indicates you’re interested in learning and becoming informed.

  Asking questions also works well when interacting with staff, as it presents differently than stating a strong opinion, which can seem like undermining the skilled professionals. Sometimes, a properly worded question in a calm tone can effect more change than a request.

• Effective communication is a two-way street. Practice active listening when interacting with hospital staff, and make sure you fully understand the information being provided. Repeat back important details to confirm your understanding and ask for clarification, if needed. This can help prevent misunderstandings and ensure that you’re on the same page with the healthcare team.
• Keep a NICU journal. It can be a fancy journal or a standard notebook — whatever you like. Journaling is great for mental health and helps us to celebrate preemie-sized accomplishments. You think you’re going to remember everything, but… that doesn’t always happen.

  Even if you’re inclined to record information on your phone, writing it down can be very helpful.

  Record new terms, details about procedures, names of staff, test results, lists of questions and more. At a later date, it can be used for names of therapists or info at follow-up appointments.

• Spend time with your baby! This can be through kangaroo care, singing Modeh Ani (or any tune) or helping with feeding and other cares when applicable. And don’t minimize the value in simply being present!
• NICU staff members work hard! And remember — they are not babysitters; they are experienced, medical professionals. Call them by their names and titles. Be friendly and respectful.
• Every morning, the doctors make their rounds. Do not be intimidated by the large group, as many of them may be students. The lineup is as follows: Each baby has an assigned nurse. Above the nurse there is a resident (who is straight out of medical school), a fellow (an MD who is training in a specific specialty), and an attending physician (neonatologist). There may be other medical professionals present during rounds, such as a respiratory therapist. This time during morning rounds is an opportunity to pose any questions you may have to your child’s attending physician. If you wish to have a longer discussion, it’s a good idea to request an appointment with the doctor.

  At times, it may be helpful to ask which person is the right one to speak to about a concern; it may be the respiratory therapist or the charge nurse, for example.

• Visiting and communicating at the right times does make a difference. Of course, it’s not always possible, but even if you cannot be there at rounds every day, try to be there at least once a week at that time. If you usually go during the day, try to go at least once a week in the evening. When you are unable to go for some reason, you can always call the nurses.
• The NICU can be a high-stress environment, and the staff may be handling multiple emergencies. Patience and understanding during busy times — and even when it’s not as busy — is most appreciated.
• Make a kiddush Hashem. At all times. This means not only in the NICU proper, but anywhere in the hospital, whether interacting with Jews or non-Jews. In addition, be sure advocacy doesn’t come across as Jews being inflexible, mistrustful of hospital staff, demanding to get their way or receive privileges. Stereotyping is common and antisemitism is on the rise. At the end of the day, everyone wants what is best for baby. (We’ve heard stories both ways: nurses speaking about frum preemie moms who made such a positive impact that they still talk about it many years later, and, unfortunately, the reverse.)
• Show appreciation. A simple “thank you” can help build a positive relationships with healthcare providers. Bring refreshments when you’re able or leave a basket of chocolates with a note by baby’s bedside. Gifts such as a Starbucks or Dunkin Donuts gift card or cute pens are also appreciated. And, as is true in many a situation, a sincerely written card means the most. These things can go a long way. Gratitude matters.
• Follow guidelines. If the hospital has rules about visitation, hygiene practices, photography, handling breastmilk or anything else — adhere to them. These rules are in place to protect the health and safety of all babies in the unit.
• Be open about religious and cultural needs. You’d be surprised — a lot of NICU staff members have been trained regarding Jewish practices and while they may not understand all the intricacies of halacha, they’re often familiar with Shabbos and the need to set up a system to communicate or where to find the kashrus symbol of the fortifier. If they are not, gently share and explain what is important to you, such as cholov Yisrael formula or taping a tefillah to the isolette. (Don’t make assumptions regarding halacha; ask a Rav. See Halachic Needs for further information.)
• If you require further assistance in advocating for your baby, each NICU has a social worker who can help facilitate difficult conversations with the medical staff. Additionally, a frum hospital liaison might help you navigate.