How to Advocate for Your Baby in the NICU

Having a NICU baby was likely not in your birth plan. Commuting back and forth to the NICU, spending hours at the hospital, and having to leave your baby when you head home is tough! You may feel like a visitor, while your baby’s nurses and doctors are providing a lot of care. However, YOU are your baby’s parent and are a vital part of your baby’s care team. It’s important for you as the parent to understand your role in the NICU and how you can impact your baby’s growth and development.

As your baby’s number one fan, you are the best advocate for their health and safety. Here are some ways you can practice advocating for your baby. 

1. While this may be obvious: Get to know your baby! While NICU nurses and doctors are experts in their field, YOU are an expert on YOUR baby! Every baby is unique. Babies have their own mannerisms, unique needs, and little personalities. Simply by spending time at bedside with your baby, you will start to learn about who they are. How do they like to be held? What position do they like to sleep in? How often do they like to be burped during a feed, and in what position? What comforts them? What makes them upset? As you come to understand your baby’s cues and signals, you can better respond to them. You can also help the providers on your baby’s care team support your baby’s individual needs!
2. Trust your gut. Even as a first-time parent, trust that your parental instincts will kick in. You may still be in the process of getting to know your baby, and in an environment you didn’t expect to be in. But, with every passing day, you are becoming more of an expert on your baby. If you feel that your baby is acting differently (more tired or fussy than usual), looks different (more pale or mottled), or if something just feels “off,” let your nurse know! NICU nurses are trained to pick up on these subtle signs, but you as your baby’s parent have a more intimate knowledge and understanding of your baby. Don’t be afraid to bring up any concerns or questions. They will appreciate your insight and perspective.
3. Educate yourself. The NICU has its own language, which can be overwhelming. There are many resources (NICU Nook being a great one!) that can teach you how to acclimate yourself to this new environment. The more background and understanding that you have on what’s going, the more confident you will feel as your baby’s #1 advocate. NICU Nook’s essential course not only reviews the NICU vocabulary (apneas, bradys, desats, etc), but it also reviews the purpose of medical equipment, the milestones your baby needs to achieve before discharge, and how to handle setbacks. Your NICU nurse will also be more than happy to answer any questions you have, so don’t be afraid to ask. Knowledge is truly power. 
4. Participate in rounds. Rounds are when your baby’s entire medical team - doctors, residents, nurses, NPs, nutritionists, social workers, etc. - meets to review your baby’s progress over the last 24 hours and create a plan for the next 24 hours. You are always welcome at rounds as an active participant. You can work up to this! You can first start by asking your nurse to debrief you on rounds if you missed it. Then, you can attend rounds and just listen. When you feel ready, come prepared with some questions to ask. We promise that it becomes less intimidating over time! 
5. Plan a family meeting. Aside from rounds, which occur every day, you can also ask your NICU team for a family meeting. This is a separate meeting in which your baby’s care team, often a social worker, doctor, nurse, and other specialists as needed, meet (usually in a private conference room or Zoom) to discuss your baby’s care. You can call a family meeting at any time, but parents usually call for one after a setback (i.e. your baby got sick, had an unexpected surgery, or another unanticipated event occurred), a major change has occurred or is planned (i.e. your baby received a new diagnosis, to discuss placement of a g-tube or trach), or if you don’t understand what’s going on with the current plan and you want more clarity. The family meeting lets you speak with everyone at once in a more private space with more time than rounds. 

So, as you can see, there are several ways that you can advocate for your baby. You are your baby’s #1 advocate because you know them best. Our essential course has TONS of material that can help you feel empowered as your baby’s primary source of love and care in the NICU. Because, as you may have heard us say, your care is its own form of medicine!