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5 Ways to Advocate for your Preemie in the NICU
The NICU is a place you never want to find yourself as a parent, though when you need it, it’s there for you and your baby. In the midst of a medical crisis like many premature infants go through in the NICU, much of the control is stripped from parents and given to the medical team. While this is important to provide life-saving care and optimize health outcomes, it can leave parents feeling helpless and side-lined in their baby's life. Families need to be the center of a baby’s care plan, and I want to help empower you to advocate for your baby throughout this challenging and traumatic landscape. Here are 5 things you can do to advocate for your preemie in the NICU.
1. Attend and Participate in rounds if you can.
Every morning your medical team will round to discuss your baby’s care plan. This is your chance to hear updates about the day, ask questions, and provide your valuable input. Your team may include a neonatologist, pulmonologist, neurologist, nutritionist, cardiologist, and more. Each team member can provide input within their area of expertise to guide care. Don’t forget about your role in the team, and your area of expertise: your baby! You know your baby best, and your observations and opinions are just as valuable.
2. Participate in care times.
Preemies often have specific care times where their nurse will take vitals, change the diaper, reposition baby and provide other necessary care tasks while otherwise protecting sleep and rest. During these care times, ask your nurse or therapist about ways you can help out and bond with your baby. Learn strategies for developmentally supportive diaper changes, ask your PT to help you engage in comforting touch and skin-to-skin time, and let your baby feel, touch, smell, and hear your presence as they grow. One of my favorite things to do as a neonatal therapist is to facilitate connection and bonding experiences with families and their littles. In the middle of medical trauma, neonatal therapists get to help babies do baby things, and parents do parent things, and this supports all aspects of baby’s health. Parental involvement at the bedside is proven to support the infant’s sleep, decrease stress and pain, promote growth, decrease hospital length of stay, and encourage bonding and positive parental mental health outcomes. Everybody wins!
3. Learn the lingo.
The hospital is full of medical terminology, and the NICU loves a good acronym: BPD, NEC, IVH…what does it all mean?! (I’ll help you out here with these common preemie conditions: bronchopulmonary dysplasia, necrotizing enterocolitis, and intraventricular hemorrhage) If you don’t know a term your team uses: ASK! I caution you to be careful with Google, as it can be misleading and overwhelming without a medical professional to guide you through it. Don’t be afraid to ask questions and seek clarification from your medical providers.
4. Know your resources.
Did you know you can ask for a primary nursing team who is assigned to your baby and knows them intricately? Ask for a social work consult and/or cultural navigator for more support and information about your hospital’s resources. Many NICUs have play specialists, music therapists, and acupressure professionals to provide a holistic approach to your baby’s NICU experience. Seek them out!
5. Speak up if something doesn't feel right.
As the parent, you are the one who is there at the bedside day in and day out. You see your baby minute to minute and watch the changes in real-time. And if something doesn't feel right, speak up! Speak with a variety of experts, ask for specialty consults, and seek parent support groups to gather information to inform your decisions and advocate for your baby.
But you don’t have to take it all from me. Here is some advice I’ve collected from parents who have had babies in the NICU.
- You need to advocate for your baby and ask questions–it’s the most important thing we learned!
- Make memories any way you can. We loved lots and lots of skin-to-skin time.
- Home is wherever your baby is safe–and for a while, that is the NICU. Your baby is exactly where they need to be right now.
- Don’t be afraid of all the wires and tubes. Don’t let it prevent you from holding your baby.
- It’s ok to sleep–your baby is well cared for. It’s ok to cry–this experience is isolating and exhausting.
- Breathe. This is your and your baby’s story. Bring a notebook and write it all down. It feels like an eternity but will only be a blip.
- As parents, you have power. Ask questions, advocate, and speak up!
The NICU is a scary, intimidating place, but one thing I have learned after years of working in the NICU is that preemies are the strongest among us, and preemie parents have power like none other. While your medical team may be the experts on specific health conditions and procedures, YOU are the expert on your baby, and your input, your presence, and your intuition matters!
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Angela Fritz PT, DPT, PCS is a pediatric physical therapist in Seattle, WA who specializes in infant development. Angela currently work's at Seattle Children’s Hospital on the infant team, but has experience working with children 0-18 years of age. You can follow Angela on Socials @bebe__PT or at www.bebe-pt.com