Each NICU family is unique based on the gestational age of the baby, medical complications, culture and family background. One universal belief that often all families share is that they don’t want to necessarily be there, and they hope to get out of the NICU as soon as possible! NICU Advocacy is one of the best ways to ensure your time in the NICU is effective, understood, and supported.
There is often a bond and understanding that NICU families share because there truly is no feeling like it. Often families struggle with feeling helpless, frustrated, out of control, ill-prepared for a situation like this, and dealing with a lot of grief. Families, and moms especially, also have to wrestle with and uproot the lie that they are the ones that have failed their babies. Which is not true. Neither the mother nor the mother’s body failed the baby. It’s probably one of the hardest experiences that parents will ever go through!
My desire and reason for my practice is to give parents hope. Informed optimism doesn’t mean only looking at the bright side, it means not overlooking the bright side. If parents can’t see the possibility, it’s much harder to solve the problem. I want to not only offer hope but also well-educated answers to give parents a more grounded understanding of how to help their baby in the NICU.
The Importance of NICU Advocacy
1 out of 10 babies will end up in the NICU, so this is something that is so important to be aware of and informed about in general! It’s important to advocate for babies in the NICU because a common misconception about these babies is that “they’re just smaller than full term babies.” Often, we are not thinking of the brain maturation of the baby and how preterm infants are still needing neural pathways to be formed in the brain. Also discharging from the NICU doesn’t necessarily mean there’s not more work to do in regard to supporting brain development for your baby!
Every experience and touch matters to the baby’s brain and to the maturation of the baby’s brain. The NICU works to save the babies, to help them survive through extra necessary support, but then there is so much that goes into promoting growth and development of the brain. Brains are built over time and from the bottom up so early experiences often have the greatest impact on the baby’s neurological growth. A baby born at 34-35 weeks only has 53% of their brain cortical matter. So even a baby that is only 5-6 weeks from birth still has approximately half of their brain matter that still needs to grow! Despite the advancements in neonatal care that healthcare has made, there are still challenges in the neurodevelopmental outcomes. Which just means as parents, there is in fact an opportunity for advocating for your baby in the NICU.
Strategies for Effective NICU Advocacy
1. Keep a NICU Journal
I highly recommend, even if you do everything on your phone, to have a paper and pen with you at all times. Have a NICU journal. Not only is journaling good for our mental health, that hand to brain, there is something about it that is very healing. Also, it helps you process. You can find the information quickly. You can jot down reminders, you make daily journals about weight and any concerns you have that day, who your nurse was that day. Was there something good that happened? It’s a way to celebrate the accomplishments of the day with yourself. Throw a little party in your journal. Celebrate those little things in your journal and then have some kind of post it notes or tag or something to bookmark that signals where you enter your questions. When they pop in your brain, because it never fails, the doctor comes by, or the specialist comes by and you have 15 questions, and you can only think of one of them. So, #1 journal.
2. Attend NICU Rounds
Depending on the NICU, their philosophy on family-centered care and the size of the unit, rounds may look a little different everywhere. Most NICUs have Daily rounds and Weekly rounds. Daily rounds and weekly rounds are different.
Daily rounds happen on a daily basis and are usually quick. They’re used to discuss the plans for the day. The medical professionals who typically participate in daily rounds: the RN, the nurse practitioner and the neonatologist.
This is a wonderful place to insert yourself easily. Doctors typically do rounds around about the same time each day. Now, if they have an emergency, if there’s a birth, it’s not going to be exactly the same time. The docs have a flow of their day, so if you could just ask when you first get in the NICU…When does the neonatologist usually come around for daily rounds? The nurse should know. If she says, “they’re a doctor. you never know when they’re going to come by.” Then it may not be worth sticking around for because you may not see them, but there is a high chance that if you know they’re going to be in the afternoon, that maybe you could rearrange your schedule so you could be at the bedside.
Weekly rounds are a longer meeting in duration, it’s more in depth, and it has many more specialists attending. That’s when you’re going to have doctors, nurses, dietitians, developmental therapists, speech-language pathologist, lactation consultant, neonatal therapists, respiratory therapists. I mean, you’re going to have everybody at that meeting. That is a great place where you can get your questions answered.
Parents should be invited to this meeting, but they’re often not. They often don’t even know that weekly rounding exists. Research shows that parents should be the most important team members in that multidisciplinary team weekly round meeting.
If you are told that parents normally don’t attend these meetings, inform staff that you would like to attend…what’s the time and date?
The NICU is broken up into day shift and night shift for nurses. Although shift change is not considered an official rounding opportunity, it is a way in which you can talk to both nurses. You will have the ability to see both day shift and night shift nurses and talk about what happened during their shift and what the plan of care will be for the next shift coming on.
3. Ask Questions
Asking questions can be difficult depending on your personality and how you view those in authority.
Ask the RN when would be a good time to discuss your baby and ask some questions. Your baby’s nurse may have 2 or 3 other babies she’s caring for. So, when you give her flexibility, that gives her the freedom to tell you what’s best for her schedule. She’ll also know that you are on her team. she is more apt to sit with you a little bit longer just from being human, she understands that you understand her.
Ask clarifying questions and ask people to explain. When you don’t understand, it’s OK; it’s OK to say, I don’t know what you mean by encephalopathy. Can you please repeat that and I’m going to write that down. I’m going to get my NICU journal over here and I’m going to write that word down. I’m going to go look it up’ but can you please explain that?
Instead of verbiage “pros and cons”, I prefer “burdens and benefits”. If you’re talking about a possible procedure, could you tell me the burdens and the benefits? Because there probably will be some of both. And a lot of times in our decisions in the NICU, there’s not one right answer. You’re really going to have to weigh the burdens and the benefits.
If a decision is not an emergency, ask for more time to think about it and decide. If the staff is coming to you and they’re saying your baby needs this procedure. You can ask if it’s an emergency, this a life-or-death decision? Do we have 15-20 minutes to sit here, and problem solve to think through to ask questions? It’s OK to give ourselves that permission to take some time to take a deep breath and say, “My brain right now in the NICU is NICU brain.” And NICU Mamas and NICU daddies- Know what that means! It’s that sometimes it takes you a little bit more time to process, and that is OK take your time. Ask them can I have just a minute? Vocalize if you feel rushed.
Sometimes we avoid the difficult questions because we don’t want to know the answer. In the NICU there are a lot of hard things that happen, and I never want to undermine the gravity that there are many parents that don’t walk out of the NICU with their babies. But I think in the long run, it really doesn’t serve you well. Like if there is a nagging question in there, ask it. You can really come up with a plan once you know the answers to those difficult questions. And be honest with the professionals. They’re humans too, and it’s OK to express that you are fearful. It’s important to vocalize those questions and say those things. Better than wondering and letting it keep you up, more than you’re already staying up.
4. Trust Your Intuition
Parents know their baby best. The medical professionals are the medical professionals. They’re not going home with that baby, as the parent, you are. You’re the one that’s lying there with that baby on your chest. You know their breathing rhythm. You know when the breathing rhythm gets off, you’re the one who sits there and stares at them, and you will realize before the monitors go off. The coloring around her mouth and her nose is different. You’re going to catch that before the monitors will, so trust your gut.
You may think, oh, I don’t know all these medical terms and lingo, and I don’t know how to do surgery; you don’t need to, you just need to listen to your parental intuition. It’s important and it’s easy to kind of stamp that out when one nurse or two nurses or the neonatologists are dismissive. If it’s important to you, use your ability to advocate. Just to say it and fight for your baby, which is so hard, especially if you’re just not prepared for it. You’re like, “I thought I was just going to be home. Now I’m here. I don’t want to be here.”
NICU Advocacy: You Are Not Alone
Remember, you’re not alone in this journey. I’m here to support you and your family through every step of your NICU experience. My passion lies in ensuring you never feel isolated or incompetent. These are feelings no parent should feel.
Let’s navigate this path together. If you wish to discuss NICU advocacy or schedule a feeding assessment, you can reach me at Micha@MichaClark.com. For insights into my parenting philosophy, visit my Instagram @micha_clark.
NICU Advocacy, Preterm Infant Care, Parental Support in the NICU