Making Lemonade Out of Lemons: Advice from Former NICU Parents

I still remember the first time I walked into the NICU. It was hours after the birth of my twin girls – 15 weeks too soon. The NICU was loud and unfamiliar. Everywhere I looked there were monitors, wires and tubes – beeping, circulating air, dripping IV fluids – all of this to keep my girls alive.

My first true glimpse off their tiny one-pound bodies was a stark contrast to the chubby pink cheeks that most parents see upon the arrival of their children. Their bodies were frail; their skin paper thin and their eyes fused shut. When a nurse told me I could reach in and touch their little hands, I was shocked.

As I reached in to touch my daughter Madi’s hand, she grasped her fingers tightly around mine and floated her other hand across her body to grasp it with those tiny fingers as well. It felt like she was telling me, we’re in this together.

Our NICU stay was every bit the rollercoaster ride that the NICU staff warns you about. On day 9, we lost our sweet Madi due to complications from her extreme prematurity. Two weeks later, our daughter Cami was transferred in the middle of the night to Nationwide Children’s Hospital’s Main Campus because she had a serious condition called Necrotizing Enterocolitis.

In total she spent 175 days in the NICU during which she had 3 major abdominal surgeries and a host of ups and downs. But 4 years after her “Zoo Day,” her NICU stay is a distant memory. To look at her, you would never guess what she has been through. She’s happy, healthy, smart, passionate, beautiful and every bit on track developmentally. She’s the strongest little girl I know – and I owe so much of that to the incredible care she received.

I learned a lot during those 175 days – as all NICU parents do. Earlier this year, we asked families of NICU graduates to share advice for parents just beginning their journey. Here are 8 tips from parents of NICU grads to help you make lemonade out of lemons and make the most of your child’s NICU stay:

1. Write down all of your questions and ask them at every opportunity. There will be a lot of medical terminology, if you don’t understand what’s being said – ASK!
2. You are your child’s voice. Trust your gut and speak up if you are unsure or don’t feel something is right. You know your child best!
3. Allow yourself to feel what you are feeling. You don’t have to hold everything together – this time in your life is HARD! Don’t be afraid to ask for help – and accept it when it’s offered.
4. Listen to your NICU nurses. They are a wealth of knowledge!
5. Get involved in your child’s care and ask your nurses what you can do. From changing diapers and holding them to be weighed, to bottle or breastfeeding and kangaroo care, there are so many ways you can get involved – even when they are very tiny!
6. Kangaroo as much as possible. Skin-to-skin care is such an important bonding moment with your baby and has so many benefits to both parent and child. Find out more about why Kangaroo Care is so important in the NICU.
7. Take care of yourself. You’re probably exhausted, but remember you can’t pour from an empty cup. And take care of your relationship with your significant other. Spend time together and know you have each other to lean on.
8. Celebrate every milestone. From ounces gained, to first bottles and moving from an isolette to a crib – the NICU has a unique set of milestones that should be celebrated as one step closer to the ultimate goal – “Zoo day!”

Having a child in the NICU is a rollercoaster ride, but kids are incredibly strong and resilient. You will learn so much from them and become an even better parent because of this experience. Know you are never alone in your NICU journey, there are many other parents who have been in your shoes and are a wealth of support and knowledge throughout your NICU stay and beyond.

For more tips about caring for yourself and your child during their NICU stay, download our MyChildren’s App.