No one plans to become a parent of a NICU baby. When a baby is born prematurely or medically fragile, most parents are woefully unprepared for the journey through the Neonatal Intensive Care Unit (NICU). Infants in the NICU are often so fragile that they cannot be held, fed, dressed or bathed. Parents often feel disempowered and helpless.
Throughout my pregnancy, I took excellent care of myself and did everything right, but suddenly found myself in preterm labor. When my twin boys, Micah and Zachary, were born three months prematurely, I didn’t know how to be their mommy. We were often physically separated from each other. During my time with them, I was terrified of hurting their tiny bodies. I didn’t understand the NICU language. I didn’t understand the wires, machines, alarms or numbers. I had to stand back and let others take care of my newborn twins. I could not protect them from the pokes, prods and emotional distress they endured. Needless to say, I was a mess.
Zachary was hospitalized for 91 days. Micah developed necrotizing enterocolitis (NEC), a life-threatening intestinal disease, and remained hospitalized for 299 days. By the time both of my twins were at home, I knew things that I only wish I had known from day one in the NICU. Below is what I wish someone had told me.
- You are an integral part of your NICU baby’s care team. Your feelings and observations are critically important. Speak up, respectfully. Ask questions. Voice your concerns. Share what is important to you. If you feel strongly that something is in the best interest of your baby, partner with your care team to help make it happen.
- Fragile infants need breast milk. Human milk can be life-saving for fragile infants. Mothers should begin pumping as soon as possible. When mothers’ own milk is unavailable, pasteurized donor breast milk is the next best option. Human milk protects but does not eliminate the risks of NEC. Formula does not offer any protection against NEC.
- You know your baby best. Learn your baby’s cues. NICU babies can become critically ill fast. If you sense something isn’t quite right, voice your concerns and make sure they are addressed. Watch for subtle signs that something may be wrong:
- abnormally distended belly
- temperature instability
- blood in stool
- frequent dry diapers
- frequent or large amounts of vomit,
- constipation
- lethargic or not as responsive
- difficulty or change in breathing
- Insist on having primary caregivers. A primary team who knows your baby and family will help to ensure better communication and continuity of care, which increases patient safety. Take time to build a respectful, trusting relationship with your baby’s primary caregivers.
- Learn how to care for your baby. Ask your baby’s nurse to teach you how to provide basic care for your baby. Provide kangaroo care as often as you can. When you cannot kangaroo your baby, hold hands, sing and read to them.
- Pay attention to details. Keep a journal documenting your baby’s routines, behavior, as well as his/her setbacks and accomplishments. Take notes during rounds. You may notice details that no one else will.
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Become your baby’s expert. Learn everything you can about your baby’s health or condition. If you’re not sure where to find credible information, ask your baby’s care team. Reach out to other NICU families. Reach out to other institutions or clinicians if you have specific questions that your baby’s care team cannot address.
- You are your baby’s voice. Attend rounds. Be proud to serve as your baby’s advocate. Your insight and questions matter. Your baby needs you to speak up for him/her, respectfully.
- Create a haven of peace and healing. Leave behind your frustrations and fears so that you can be present and tune into your baby. Make your baby’s space your home away from home. Smile at your baby. Sing to your baby. Bring in special blankets. Hang up family photos. Play soothing music. Celebrate the smallest of milestones.
- Live your life fully. Having a baby in the NICU is exhausting and overwhelming. The NICU journey may feel like it’s never going to end, but it will be over soon. For better or worse, you’ll never have this time back. Live it fully, without regrets. Make hand and footprints. Read special books to your baby. Take pictures and videos with your baby, even if they are critically ill. Savor this time with your baby.
Tragically, child loss is an unfathomable reality for some NICU families. If you’ve experienced this tragic loss, we have resources for bereaved families.
Parents of NICU babies need support from their family and community. If you know a family with a baby in the NICU, insist on showing them some love. A community of love and support will help parents be the best advocates, nurturers, and champions for their precious little ones.
