When our son Sam was in the Neonatal Intensive Care Unit (NICU), the environment felt overwhelming and out of my control. Being his advocate in the NICU was not always easy, especially when emotions run high. My nursing background definitely made that a little easier for me to navigate and I wanted to share some tips with you!
Remember, advocating is not about challenging the experts, but about partnering with them to make sure your baby’s unique needs are understood and met. Here are some important tips on how to navigate difficult conversations, voice your concerns, and be the best advocate for your child during these incredibly stressful times.
1. Understand the NICU Language
Medical terminology can be intimidating, especially when it concerns your baby’s health. Take the time to ask questions and clarify things you don’t understand. It’s okay to ask a doctor or nurse to slow down or explain something in simpler terms. There are acronyms for everything- and it’s best if you write them down so you can remember. This knowledge will empower you to make informed decisions for your baby.
Consider keeping a notebook or using a notes app on your phone to track important details, medical terms, and your baby’s progress. Writing down questions as they come to mind can also help when it’s time for rounds or meetings with the care team.
2. Speak Up and Voice Your Concerns
In a highly medicalized setting like the NICU, it can feel intimidating to speak up, but remember—you know your baby better than anyone else. If something doesn’t seem right and/or you have concerns about your baby’s care, it’s essential to express them. Always trust your instincts.
Here’s how to approach it:
Be Direct, Yet Respectful: Use clear and respectful language when voicing your concerns. For example, you can say, “I noticed my baby seems more agitated than usual. Can we talk about what might be causing that?”
Ask for Clarification: If a decision is made about your baby’s care that you don’t fully understand, ask for clarification. It’s important to feel confident about every aspect of your child’s treatment. Questions like, “Can you explain why this change was made?” or “What are the potential risks or benefits of this approach?” can help you gain a better understanding. It is always okay to ask why they are doing what they are doing! It is their job to explain it to you.
Remain Calm: In highly emotional situations, staying calm can make conversations more productive. If you feel overwhelmed, take a moment to compose yourself before raising concerns. You can always ask for a brief break to process the information before continuing the discussion. I am going to be honest. I wasn’t always great at this, but my husband was. He would restate my concerns in a more calm manner, and it always was better received than when I would fly off the handle. But, it’s to be expected. If that happens to you too, it is okay. Just try again when you have regained composure!
3. Handle Hard Conversations with Grace
Sometimes, the conversations in the NICU are difficult—whether it’s hearing about a setback, discussing your baby’s prognosis, or making decisions about complex treatments. Here’s how we navigated those tough talks:
Prepare Emotionally: Before a scheduled meeting with the medical team, give yourself some time to process your emotions. It may help to talk with your partner, a close family member, or even a NICU social worker to prepare for the conversation. There was a particular time in the PICU where we consulted our old NICU doctors. It was extremely helpful to have their support and insight.
Bring Support: If possible, have a trusted person join you during difficult conversations. Having someone else there can help you process information and provide emotional support. My husband and I were always there for the “family meetings”. It was important for us both to hear the information together but also to support one another.
Take Notes: It’s easy to feel overwhelmed in the moment, so writing things down can help you absorb the details and revisit them later. If you don’t understand something during the conversation, don’t hesitate to ask for clarification right away. I know of families who have even recorded meetings because they knew they wouldn’t remember everything. This is a great way to be able to replay things and get a full understanding of what is going on.
If the news is not what you were hoping for, allow yourself the space to grieve or feel whatever emotions arise. Sometimes that looks like tabling the discussion for another time, or leaving the room and asking for a break. I always ended every meeting with “What are the next steps?” I liked to know what the next hurdle was that was ahead of us. Understanding the plan moving forward can give you a sense of direction, even in difficult times.
4. Be an Active Participant in Rounds and Meetings
Many NICUs have daily rounds where the medical team discusses your baby’s progress and treatment plan. As a parent, you are encouraged to participate in these rounds. This is a valuable opportunity to ask questions, share observations, and voice your preferences. Sam was in the NICU for a long time, in the beginning his rounds were first because he was the “sickest” on the unit, and then as he got healthier the time they rounded on him changed. If you are unsure of when the doctors round and/or it changes daily. You can always call in the morning and ask- who is the attending doctor and what time will they round. The nurses can answer this, I promise!
Ask About the Plan of Care: Don’t hesitate to ask, “What’s the plan for today?” or “What are we hoping to see in the next few days?” Understanding the short-term and long-term goals helps you stay informed and gives you a sense of what to expect. With long NICU stays goals were met in weeks and months, not necessarily in days. So, instead of me asking what the plan of the day was, I always asked them what was the next goal we were working towards.
Share What You Observe: Parents often notice subtle changes in their baby that others may not see. Share these observations with the team, whether it is changes in feeding, breathing, or behavior. Your input is invaluable. Like I mentioned before, always trust your instincts!
Request Involvement in Care: Many NICUs encourage parents to take part in caregiving tasks, such as diaper changes, feedings, or kangaroo care (skin-to-skin contact). These moments are not only precious for bonding, but they also allow you to feel more connected and involved in your baby’s care. With long NICU stays we had many many nurses care for Sam. I wrote on a piece of paper what I liked to do for him while I was there. Some nurses just do things, because it’s their job, but I promise you can absolutely change the diapers, take the temp and swaddle them too. You just have to speak up and say what you want to do. *I know asking to do these things for your baby can feel weird, and it did for me too. Asking to hold and change your own baby, as the Mom does just sting a bit. I do get it. But in these scenarios you have to ask. And if you don’t want to ask- you can always make your wishes known with a sign like I did!
5. Lean on the NICU Team for Support
Remember that advocating for your baby doesn’t mean you have to do it alone. The NICU team is there to help you navigate this journey. Social workers, patient advocates, and chaplains can offer emotional support and guidance during stressful times. Don’t hesitate to reach out to them if you’re struggling or need someone to talk to. NICU nurses are angels. I will never say anything other than that because these women held Sam, comforted him and talked to him when I couldn’t be there. I spent many days crying my eyes out, talking with them, telling them about my other kids, those nurses became family. Lean on them while you are there. It is okay to talk and vent to them, that is part of their job is taking care of you too!
6. Take Care of Yourself Too
Speaking of taking care of you… Being an advocate for your baby in the NICU is emotionally and physically draining. It is VERY easy to forget about your own needs when you’re focused on your child’s well-being, but taking care of yourself allows you to be the best advocate possible. If you are staying at the hospital I encourage you to leave and go home every once and a while for a good night's sleep and a break. I didn’t stay up there, I had 2 other kids at home and in hindsight I am thankful I had the break. Being there 24./7 would have been draining in a whole other way. But being home with my big kids, as hard as it was to leave Sam, was a good “break” for me. I could sleep in my own bed, snuggle my kids and be present for them. It also allowed me to eat and hydrate too, since that was hard to do in Sam's room as well. It is okay to take breaks when you need them. Lean on your support network of family and friends so that you can maintain your strength during this journey. If your journey is a long one like ours was, you will need that strength for the duration.
The NICU rollercoaster is full of highs and lows, and as a parent, you have an important voice in your baby’s care. By staying informed, speaking up, and handling tough conversations with grace, you can ensure that your baby receives the best possible care! You are your child’s most powerful advocate, and your involvement can make all the difference in their stay. I know it isn’t easy, but there is support out there for you! Rooting for you,
~ Sara
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