No one plans to be a parent of a preemie. But for those of us who suddenly find ourselves in this overwhelming, uncertain, foreign place called the NICU, with our tiny babies outside of our bodies…what do we do? How do we overcome feelings of despair? How do we parent our preemie?
I took excellent care of myself, did everything right and had a perfect pregnancy, but suddenly found myself in preterm labor. My twin boys, Micah and Zachary, were born three months prematurely. I was overwhelmed and felt completely disempowered. I didn’t understand the NICU language. I didn’t know how to be Micah and Zachary’s mommy. I was terrified.
Zachary was in the NICU for 91 days. Micah was in the NICU and PICU for 299 days. Micah and Zachary’s hospitalizations gave me courage and insight that I only wish I had known the night they were born. Recently, I teamed up with other parents of preemies to find out:
What do parents of preemies need to know from day one?
Here are our top 10 pointers for parents of preemies…
You are an integral part of your preemie’s care team. Your thoughts on how your preemie is doing are just as important as your baby’s neonatologist’s thoughts. 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 preemie, insist on it being that way.
Fresh breast milk is best for preemies. Whenever possible, preemies should receive a 100% breast milk diet. Fresh breast milk is preferred over frozen. Fresh breast milk contains invaluable nutrients, immunities and live antibodies. Mamas of preemies should lean on lactation consultants and other sources of support to help establish their milk supply. Some preemies cannot tolerate formula, including formula-based fortifiers. Formula increases a preemie’s risk of developing a life-threatening intestinal disease, called necrotizing enterocolitis (NEC).
You know your preemie best. Premature babies can become critically ill shockingly fast. You will know before anyone else when something just doesn’t seem right. If you sense something isn’t quite right, voice your concerns and make sure they are heard and acted upon. Watch for these subtle signs that something may be wrong.
Temperature instability (body temp is too high or too low)
Blood in stool
Frequent dry diapers
Frequent or large amounts of vomit/spit up
Lethargic or not as responsive
Difficulty or change in breathing
These subtle signs may indicate that something is wrong and they need to be taken very seriously.
Insist on having primary caregivers. A team of primary nurses who know your preemie 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 preemie’s primary caregivers.
Take an active role in your preemie’s care. Find ways to help care for your preemie. Read children’s books to your preemie. Hold hands. Stay involved and give your preemie physical contact every day. Preemies need to feel their parents’ touch.
Pay attention to the details. Keep a journal. Take notes during rounds. Do not assume the care team knows everything and will do everything right. They are human and make mistakes. If you don’t notice the mistakes, it’s possible that no one else will.
Read, research, reflect, and reach out. Become your preemie’s expert. If you’re not sure where to find credible information, ask your preemie’s care team. Learn the most current research and cutting edge practices. Write down your thoughts, questions, and any follow up action items. Reach out to other families if you need additional support. Reach out to other institutions or researchers if you have specific questions that your preemie’s care team cannot address.
You are your preemie’s advocate. Do not let anyone intimidate or shame you for being your preemie’s advocate. You are not annoying. You are not stupid. You are not going to jeopardize your preemie’s care. Our preemies need us to speak up for them.
Optimize the situation. Make the best out of every moment you have with your preemie. If you can, make your preemie’s room your home away from home. Bring special blankets, hang up family pictures, play soothing music, take pictures, make your preemie’s space a haven of peace and healing.
Live your life fully. Having a preemie is exhausting and terrifying. Make every effort to live in the moment. Find the beauty in your life as it is right now. Take pictures and videos with your preemie, every day. You will cherish these memories forever. Make hand and footprints. Read special books. Sing to your preemie. Even though this time in the NICU may seem like it’s never going to end, know that it will be over soon. For better or worse, you’ll never have this time back. Live it fully, without regrets.
Parents of preemies need the love and support of their family and community. If you know parents of a preemie, let them know that you’re thinking of them, often. If you’re willing to lend a helping hand, ask how to best support them and then follow through. When they’re ready, go visit the baby at the hospital. Let them feel your love. A community of love and support will help parents be the best advocates, nurturers and champions for their precious preemies.
Please share this with other parents of preemies. We wish someone had shared this with us.
Parents of Preemies