About Extreme Prematurity

What does it mean to have a baby born prematurely?

So much.

Extreme prematurity, or extreme preterm birth, is recognized as birth before 28 weeks gestation. While the outcomes of extreme prematurity vary greatly amongst children (often called ‘micropreemies’), babies born this early generally represent a disproportionate amount of chronic health and development delays among children.

This article from the NIH - Extreme Prematurity: Risk and Resiliency details the spectrum of outcomes a family in the NICU might need to contemplate facing, in addition to the challenge of being in the uncertainty of the days and weeks immediately post-birth.

At 4those, we believe that any road traveled and any end point from that road out the NICU is worth pursuing. We honor the choices and challenges NICU families like ours face during this season of life. We endeavor to offer hope, healing, and possibility for a future outside the NICU - for families and kids alike - regardless of the outcome.

Of the approximately 28000 extreme preterm births each year in the USA, 75% survive. While the chances of a child having injury to major organ systems, vision, and brain are higher than children born closer to full-term, there is hope for a little one in the NICU right now: hope that they will make it through AND that their life outside the hospital will be full, meaningful, and thriving. We want to be that beacon of hope, to let families see just what might be possible for the tiny miracle that has arrived to them, and to go on an adventure of joy, celebration, and transformation together.

It can sometimes feel scary or helpless when someone in your life is going through an incredibly long season of hardship in the NICU.

Here are a few small things that made a huge impact in our NICU journey, and ones you might think about for a friend or loved one during this time.

How to Help Someone in the NICU

Gas Cards or Visa Gift Cards

Many NICU families need to get to and from the hospital sometimes multiple times per day. A financial gift to help support them in this specific way can make a big impact.

Family Support

When parents (of all kinds) are in the NICU, they often are pulled in many directions. Being available to offer rides or care for other children in the home, walk their dog (or hire a dog walker), clean their house, do their dishes (or hire a house cleaner), mow their lawns, etc, can make a profound impact on their ability to cope in and out of the hospital.

Staff Appreciation

One thing that was so fun for us was watching how our community supported the staff at the hospital who were caring for us and for so many others. Doughnuts, cookies, pies, flowers: it all made a difference for our care teams to feel appreciated!

Intangibles: Sharing a Hopeful Story

It can be hard to do any heavy-lifting (like reaching out for help) when you are in the NICU, but if you think our story of hope, healing and possibility in the face of impossible and difficult circumstances would be of help, please pass along our website to them for them to look at while sitting next to their baby in the hospital, to reach out to us when they are ready, and to share with friends and family to help them understand the bigger journey they are facing.

Intangibles: A Hopeful & Supportive Attitude

The NICU journey can be both scary and beautiful in its own way: the sheer volume of uncertainty a family has to endure day-to-day is exhausting. Knowing that we had a community holding the hope that whatever came from that season and that we would be surrounded by love was an incredible help. When most people were holding their breath waiting for the call that Zev had not made it, we had a group of people celebrating that he was here and that he was fighting, and it gave us the strength to keep fighting and celebrating too, even when things felt their hardest. Believing in a big and beautiful life for however long we were lucky to have Zev alive was a vibe that we could feel surrounding us every step of the way, and that made all the difference in the world. Keep the light of hope burning for your people even if they will never know it. That energy moves, and shifts the energy for all preemie families everywhere!

Snacks or Meals

Many families have something like a meal train set up for when they come home from the hospital, which is wonderful! During days and weeks in the NICU, it can be tricky to make eating a priority, and especially tricky to navigate if the family has other children. Bringing meals to the hospital (breakfasts were surprisingly helpful!) and snacks that they can easily eat to and from the NICU were absolutely critical for quick nourishment. Some ideas include pretzels, apples, cheese sticks, beef jerky, egg cups, protein bars, and energy balls, but you know your loved ones best: bring them nourishing thing you know they’ll love and find comforting.

Small Gifts

Things like a new water bottle (plastic, with a lid and straw so they can take them into the hospital space), cozy slippers/socks/robes/flannel button-down shirts to wear when doing skin-to-skin, breast milk tea (if pumping) or calming tea with a mug, anything that smells like lavender to help promote relaxation, toys or baby dolls for other children in the home to help them connect to their new sibling when many of them can’t visit bedside, creature comforts like chapstick and unscented lotion (you wash your hands a LOT), massage gift cards for both the birthing parent and non-birthing parent for them to use when they are ready (this was critical to our healing journey after the physical and emotional trauma of Zev’s birth), small cards or newborn gifts/trinkets that mark the baby’s birth, keychains with initials or birth date on them, and anything else you think your people would love in this time.

Intangibles: A Listening Ear

NICU parents face a range of emotions at any time and at all times. Being there to check in without expectation - allowing them to cry or laugh or sit in silence or disappear and then come back when they needed you - was incredibly helpful. Many of our micropreemie families have incredibly long stays and the emotional and physical endurance required can feel impossible. Knowing that you are out there caring about them and supporting them emotionally as they go through and eventually process has a remarkably meaningful effect on the experience.