NICU Awareness Month and How to help a NICU family

NICU Awareness Month

Did you know September is NICU Awareness Month? Even though September is coming to an end, I wanted to squeeze one last post in, since it’s such an important topic to me.

If you’ve read my blog before, you are probably familiar with what a NICU is. However, if it’s your first time here, that’s OK. I’m here to tell you all about the NICU and how you can help a family that is struggling right now.

First, NICU stands for Neonatal Intensive Care Unit. It’s the part of the hospital that takes care of critically ill newborns and infants. While premature babies are cared for in the NICU, like my twins, full-term babies can need their care too. The NICU takes care of all babies that are extremely sick.

If you’ve ever had a friend or family member in ICU, then you may be familiar with what Intensive Care looks like. There is a lot of concern for anyone in this unit of a hospital, along with special procedures to ensure safety. Many adult patients are kept in isolation in an ICU.

Unlike an ICU, however, not all babies have their own private rooms. It really depends on how the hospital is set up. All babies do have their own incubator, or have their own crib, as they get older, bigger, and healthier. They see special doctors called Neonatologists, and often have primary care nurses.

In the NICU

When a family has a baby in the NICU, it can be a very difficult time for everyone involved. Often times, it really is a life or death situation. Emotions run very high, and it can be hard to know exactly what to do.

As a mother to two NICU babies, I know that I myself felt helpless, but I also knew that the people around our family were unsure with how they could help. Many of them were never in this situation before, and didn’t realize how serious it was. Every day we were making decisions that could have long-term effects on our children’s lives, and it was terrifying.

So, I wanted to write this post, not only for NICU Awareness Month, but for every day of the year that a family is struggling. I’m going to share what I think would have, and did help our family, and what you want to avoid if you know a family with a baby in the NICU.

How you can help

• Listen and ask questions

Even though it is a difficult time, it may really help the mom/dad/caregiver to talk about their baby and what they are going through. Really listen to what they are saying and ask questions about things you don’t understand. We may not always have the answers, but we’ll really be glad you’ve taken an interest and asked.

Also, ask about the mom/dad/caregiver. Ask if they are doing OK, and if they need to talk about what they are going through.

• Respect their wishes

If you’ve tried asking questions, and they don’t feel comfortable talking about certain things, respect their privacy. If they don’t want visitors, or can’t have visitors, don’t push. When they ask you to stay away when you or your family is sick with a cold, do it. If they ask you to get vaccinated before visiting their baby, do it, or just don’t visit.

They have enough to worry about without worrying if they’ve hurt your feelings.

• Offer Support

Not only is your emotional support needed, but there are other ways your support may be needed. If the NICU family has other children at home, can you offer childcare? Often times, small children are not allowed in the NICU, and having a trusted babysitter available is such a stress reliever.

Make meals, send gift cards, or even offer rides to the hospital. Taking away some of normal “life” responsibilities is a huge help to families that are just struggling to make it through the day.

• Be Understanding

If the family doesn’t want to talk, if they shut you out, or if they are rude, please be understanding. They may snap at you or take our their frustrations on you without meaning to.

The NICU family is not trying to hurt your feelings by not coming to your birthday/wedding/party. They just can’t imagine going to a happy event while their child is fighting to live.

Or maybe they do think they want the distraction, but then get overwhelmed once they are in a social situation. Every day life gets really difficult when something so serious is happening. A simple, “Hi. How are you?” can start a flood of tears.

Just be there when they want you to, but know that they made need to be alone too. You need to forgive anything said/done during this time because it is an extreme circumstance.

What not to do

• Stop being their friend

While you may often not know what to do, or fear you are saying the wrong thing, don’t give up on your friendship. The NICU family may not have as much time for you, but it doesn’t mean they don’t need you.

Once they get out of the hospital, things don’t automatically go back to normal. They may need to keep their baby in isolation to protect them from germs. There may be tons of follow-up appointments and therapies.

They need people in their lives that will understand, and accept them in their new way of life.

• Stop Trying

Even if you’ve invited your NICU family friends to dinner, to a party, or just over to your house, and they’ve refused or can’t make it, please keep trying. At the beginning of their journey, it may be too much to socialize, but later, they may really need it.

Also, even if they can’t go to your event, it’s still nice to know you haven’t forgotten about them.

• Pass Judgement

Unless you’ve had a baby in the NICU fighting for their life, it may be very hard to understand what exactly your friend is going through. It’s easy to think you would do things differently or better, but it is not your place to judge how another person handles it.

It is so hard to make critical decisions for someone who is depending on you. Please respect whatever decisions they make and support them.

My Own Experience

I really hope these tips were helpful. However, they are only things that I learned from my own experience. Another NICU mom or dad may have had a different experience or need different things.

The most important thing you can do is ask and try to learn. NICU Awareness month is the perfect time to learn more about the NICU and what happens there. Do you have a local NICU near your home town?

Many NICUs are in need of donations, like baby clothes, or volunteers, to help hold babies whose families can’t be there.

Spread Awareness

While NICU Awareness month may be ending, it doesn’t mean we need to stop spreading awareness. Share this post, talk to your friends, or support a charitable organization that helps the NICU. Organizations like the March of Dimes, Hand to Hold, and Project Sweet Peas are all wonderful.

A huge thank you to Renee Beau Bixler, Sophia Carney, and Heather Pijanowski for sharing their NICU pictures with us. They are all NICU families and TTTS families that share a passion for awareness.

Have ever met a baby that spent time in the NICU? Are you a NICU family too? Was this information helpful? Please let me know in the comments.