4 Things Every NICU Parent in Roanoke Should Know

One NICU Mom's Advice and Local Resources for Roanoke Families

Nothing can ever really prepare you for having a baby in the Neonatal Intensive Care Unit (NICU). Nearly a year ago, I found myself in the NICU at Carilion Children’s Hospital in Roanoke with premature twins.

When I was just 25 weeks pregnant, the twins were diagnosed with Twin Anemia Polycythemia Sequence (TAPS), a condition that can affect identical twins who share a placenta, causing one twin to have significantly more red blood cells than the other. In other words, one twin receives too many red blood cells while the other receives too few, creating an imbalance that can be dangerous for both babies. After multiple rounds of treatment at The Johns Hopkins Hospital in Baltimore, Maryland, our medical team ultimately decided it was time to deliver the girls at 32 weeks gestation for their health and mine. 

I was scared and felt completely out of control as so much of what was happening around me was suddenly in the hands of doctors and nurses. I was overwhelmed at the time, but now that my girls are older, I can look back on that experience with a little more perspective. I hope what I learned can help other NICU parents in Roanoke feel a little more prepared if they or someone they love ever finds themselves there, too.

What to Know About Carilion Children’s Hospital NICU

Carilion Children's Hospital, located inside the Carilion Roanoke Memorial Hospital near the famous Mill Mountain Star, is home to the region’s only Level IV NICU, the highest level of neonatal care. The unit is equipped to care for the most fragile babies, including those born as early as 22 weeks or weighing less than a pound. The 60-bed unit has neonatologists, specially trained nurses, respiratory therapists and other specialists on hand around the clock.

The NICU in Roanoke is organized into a pod structure, with babies cared for in one of five large areas based on their level of medical need. Each pod can host between 10-20 babies, with these pods separated by curtains and a large nurse station in the center. Nurses typically are assigned to care for two to three babies at a time, with the entire team keeping an eye on the babies in each pod. 

From my own experience, that setup was reassuring. While it can be stressful hearing monitors go off around you, I found comfort in knowing that even when my baby's nurse was busy, other nurses were nearby and watching, too.

What I Want Other NICU Parents to Know  

Having a baby in the NICU changes everything about those first weeks, the sleep schedule, the questions, the quiet panic that creeps in over things that should feel routine. You're awake in the middle of the night, surrounded by wires and machines, and none of it feels normal. Nothing quite prepares you for it all, and that's exactly why I'm writing this.

So from one NICU parent to another, here are four things I wish someone had told me when we were at the NICU at Roanoke’s Carilion Children’s Hospital.

1. Find support. We can all agree that the NICU is emotionally overwhelming. Mothers with infants in the NICU experience higher rates of postpartum anxiety and depression. According to March of Dimes, nearly 40% of NICU parents experience PTSD within the first month after birth, and about 25% still experience it up to a year later.
   
   If you're pumping breastmilk for your baby, that adds its own layer of stress. It's hard to wake up every few hours to stick to a strict pumping schedule when there's no baby beside you, or, harder still, when your baby is on a diet restriction for whatever reason. You can always ask questions of your baby's nurse or doctor during rounds, but the NICU also has parent educators who can help walk you through what's happening, plus a hospital chaplain available if you want that kind of support.
   
   
2. Know what's available to you. If you live more than 25 miles from the hospital and your child is still being treated in the NICU, you're eligible to stay at the Ronald McDonald House Southwest Virginia, just a 10-minute walk away. All it takes is a referral from the hospital's social worker, or you can ask your child's nurse to put in the request for you, so housing is ready to go for longer stays.
   
   We lived in Rockbridge County when our twins were born, so we were able to stay there ourselves. We found it super cozy, and they even provided us with dinner every day, along with freezers full of Starbucks sandwiches and cabinets full of snacks. There are refrigerators and freezers for your own food too, plus a designated breast milk freezer. While you're visiting your child at the hospital, you can also stop by the Ronald McDonald room right on the NICU floor, stocked with snacks, coffee, tea, lemonade, and frozen sandwiches as well.
   
   
3. Remember that the NICU is a marathon, not a race. There will be days your baby takes a step forward, and days they take two steps back. TThere are real goals they'll need to hit before coming home, like learning to breathe on their own, taking bottles or nursing, and regulating their own body temperature. Every one of those milestones takes time, and some days it will feel like your baby will never come home.
   
   For most families, that day does come, and eventually the NICU becomes a memory you carry. For everyone still in it, this is the long haul, and it helps to keep reminding yourself of that. When it feels like every other baby is progressing faster than yours, remember this is a journey. Your baby has their own needs, and if they take an extra week in the NICU, that doesn't mean they'll be behind in the long run. Take a deep breath. Dig your heels in. Surviving the NICU takes grit.

Important: I also want to gently acknowledge that not every baby comes home, and if that's your story, there is space here for you, too. Grief after a NICU loss is its own particular kind of hard, and it deserves real support, not silence. If you're looking for that support, Carilion's chaplain services and social workers can help connect you with grief counseling, and organizations like Share Pregnancy & Infant Loss Support and Return to Zero offer resources specifically for families who've lost a baby. Whenever you're ready for it, and not a moment before, that support will be there. 

4. The hard part doesn't always end when you bring your baby home. I can tell you from experience that the fear and anxiety linger long after you’re home. Those feelings can appear around things that should feel ordinary, like feeding your baby or leaving them to sleep without an O2 monitor watching every breath. Now that my babies are older and life has settled into more of a rhythm, I've actually started reliving some of that NICU trauma myself. Keep reaching out to family, friends, medical professionals, or whoever you need. Needing help months, even years, after your baby comes home is nothing to be ashamed of. 

You Are Not Alone

If you're reading this from a chair beside an isolette right now, I see you. The NICU asks more of parents than almost anything else in those first weeks, and there's no right way to get through it, just your way, one day at a time. 

Take heart. This will not last forever. While your baby grows and heals in the NICU, go be with them. Enjoy the snuggles and cuddles, laugh at yourself as you figure out how to work around all the crazy wires, read aloud to your baby, and give them their baths. It may feel like you can’t do anything to help them, but you can. Your baby needs you. And when you lose sight of that, these nurses and doctors will be there to remind you that your baby needs your love and presence more than anything else. Don't forget that. 

NICU Resources for Roanoke Valley Families 

Carilion Children’s Hospital NICU: Ask your baby's nurse or social worker about parent educators, chaplain support, and referrals to other resources available during your stay in the Roanoke Valley.

Carilion Maternal Mental Health: Carilion's specialized maternal mental health team provides screening, counseling, care coordination, support groups and medication therapy for Roanoke parents experiencing mental health challenges during pregnancy and after birth. 

Ronald McDonald House Southwest Virginia: Located steps from the NICU, the Ronald McDonald House Southwest Virginia offers lodging for families who live 25 miles from the hospital in Roanoke City limits. A hospital social worker or your child's nurse can submit a referral on your behalf.

NICU Parents Support Group: Postpartum Support Virginia offers a virtual support group for parents currently navigating a NICU stay or those who have been through one. 

NICU Family Support: This March of Dimes’ program partners with hospitals nationwide to offer NICU parents education, peer support, and resources for coping with the NICU journey, from admission through the transition home. 

Postpartum Support International (PSI): This nonprofit organization is for parents anywhere who need support or resources related to postpartum anxiety, depression, PTSD or other perinatal mental health concerns. Call or text 1-800-944-4773. 

FAQ About the NICU in Roanoke