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When You’re Spending the Holidays in the NICU

As you may know, Graham (our foundation’s namesake) and his sister Reece were born on Thanksgiving Day, so we know first-hand what it is like to spend the holidays in the NICU with your preemie instead of at home. We were lucky. Our friends and family seemed to understand how hard it was for us to celebrate anything when our babies were in the NICU.

This time of year is stressful enough without adding premature birth to the mix! This is the time of year where one holiday seems to blend right into the next, with Thanksgiving preparations beginning soon after Halloween, and the first notes of festive music appearing on the radio before the last of the turkey has been eaten. It’s generally regarded as a busy and overwhelming time of year for everyone, but for preemie parents, it can be extra tough.

The holidays fall right in the middle of RSV and flu season, and it can seem like there’s always someone with a runny nose just outside your front door. Whether you’re still practically living in the NICU or your little one is home, having a preemie can mean skipping the get-togethers and parties that have meant so much to your family in the past.

So how can you make the most of the holidays with your preemie? Here are four ideas:

  • Be open to celebrations as they come

Whether you’re limited in how you can celebrate because you’re trying to avoid crowds and germs or because you want to spend as much time as possible in the NICU, make an effort to let the holidays into your home and heart. So what if it’s just you, your partner – and your older children if you have them? That’s no reason not to do a little holiday decorating and cook good food and get into the spirit of the season when the mood strikes. Just keep your expectations realistic. And ask the NICU staff what you can do to bring the holidays to your preemie. Can you decorate the outside of your preemie’s isolette? We know cookies are usually appreciated by NICU staff. Your family may have a long way to go, but why not celebrate how far you’ve come?

  • Think small and say no

If this is your preemie’s first holiday season at home, your relatives may be anxious to have you over for gatherings and parties. Having to say no, if that’s what is necessary to keep your family in tip top health through the cold months, can be disappointing for everyone. But don’t give in just because you’re afraid of hurt feelings. In some cases, you can lessen hurt feelings by inviting a few very close family members over to celebrate – just make sure everyone is absolutely healthy first.

  • Don’t Forget Fun for the Little One

Celebrating in small ways can still feel meaningful, especially if this is your preemie’s first ever holiday season. As we said above, do what you can to bring holiday cheer to the NICU. Your little one won’t remember his or her first holiday, but you will! For those at home, involve your preemie in the festivities, but remember that the holidays can be overwhelming even when celebrations are simple. Since you’ll be celebrating small this year, consider using this time to create new family traditions that are low stress and just for immediate family.

  • Make plenty of memories

Don’t forget to take pictures and videos! Put your preemie in holiday themed outfits – even if it’s just a hat for the smallest preemies still in the NICU. Create a holiday card with your photos – who cares that the backdrop is wires instead of garlands? If you’re at home, now is a great time to start a holiday tradition where you snap a yearly picture of your preemie with a special holiday decoration as a way of measuring their growth from year to year!

Never doubt that you are capable of making this holiday season special but don’t commit to too much. Store-bought cookies are still delicious. An evening with hot cocoa and a movie is a lot more relaxing than hitting the holiday party circuit. Give yourself the gift of self care and find small but special ways to celebrate at home, in the NICU, and in your heart. The holidays don’t have to be flashy to be meaningful. Remember, your preemie is the greatest gift of all!

What are you most looking forward to about spending this holiday season with your preemie, in or out of the NICU?

When the NICU Journey Never Seems to End

Leaving the hospital without your preemie is hard enough. Facing an uncertain future is doubly hard. Many of us are told that we shouldn’t expect to bring our preemies home until they’ve reached their due dates. Some of us are pleasantly surprised to bring our babies home before that ballpark discharge day. But other parents of preemies find that the NICU journey lasts much longer than they or anyone else could have anticipated it would. In a few cases it’s obvious from the start that a preemie will have a longer-than-average NICU stay but many preemies remain hospitalized well beyond their due dates unexpectedly.

Whether you’re planning for a long NICU stay or not, it’s really difficult to cope with the realities of having a baby in the NICU for longer than a few weeks or months. Not only are you dealing with daily ups and downs your preemie is facing; you’re also dealing with a bunch of practical issues, too. The commute to and from the NICU. Planning visits around other obligations. Returning to work. Caring for older children. Keeping house. And then there’s the potential financial drain. The parking garage, meals on the go, and other expenses can add up!

The potential for burn out is high when your preemie’s NICU stay is longer than average. Here’s how to avoid it:

  • Remember that your preemie is being well cared for and this isn’t a race. They’re exactly where they need to be at this moment. Don’t give in to frustration, but instead look at your preemie being in the NICU as a positive thing. Your homecoming day will come soon enough!
  • Practice reasonable self care. Chances are you’re not going to take up meditation or yoga any time soon. Caring for yourself when your preemie is in the NICU means doing things like remembering to eat, prioritizing sleep, and accepting help from others when it’s offered.
  • Think of quality time, not the quantity of time. Having to go back to work while your preemie is still in the hospital can be traumatic because you feel like you should spend every waking moment at their side. Do what you can to make the time you can spend in the NICU feel special. Read your favorite books to your preemie. Tell them about your day while you practice kangaroo care. Let your preemie’s care team know when you can be there so they include you in feeds, etc.
  • Get to know your fellow NICU parents. You’ll feel less discouraged seeing other preemies go home before yours if you care for those families and can celebrate their homecomings along with them.
  • Ask the NICU if you can bring in a swing, a bouncy seat, and a Boppy pillow. Older, less fragile preemies who still need the support of the NICU may be awake and alert, and they can benefit from sitting more upright so they can visually explore and interact with the world around them.
  • Talk to your preemie’s care team about what kind of enrichment they’re getting. It can feel like time stands still for babies in the NICU but you may be surprised to learn that your preemie is getting occupational therapy, music therapy, massage, and other enriching experiences when you’re not there. And if you find out they’re not, it doesn’t hurt to ask what’s available or what you can do yourself.
  • Consider taking a day or even a weekend off. The NICU journey is traumatic for parents and you need time to heal and recover, too. The idea of going away overnight or even out to dinner can seem terrifying. But talk to your preemie’s nurses about it – they will likely offer many reassurances that taking a day off is not just okay, but healthy for parents.
  • Pace yourself. Your first impulse as a parent is probably to spend every single moment at the NICU by your preemie’s side but remember, you’ll need energy for your baby’s homecoming, too. Find ways to make your daily routine more efficient, like pumping breast milk in the car on the way to the hospital or commuting to the NICU when traffic is light or prepping dinners for the whole week on Sunday night.
  • Ask for help! There’s no shame in asking a good friend or a relative to cut your grass or tidy up your house once a month or to pick up groceries now and then. People will offer to help but won’t know what you need. Tell them!

As much as you want to get the heck out of the NICU and have your preemie at home, you may discover much later into your prematurity journey that you miss some things about the NICU – whether it’s the extra hands or the nurses and doctors who cared for your family. For now, simply love your preemie and be there for them as much as you can while also taking care of yourself so when your homecoming day does come you have the energy and strength you will need to care for your preemie at home.

Coping with Preemie Parent PTSD

The prematurity journey is so different for all of us. One preemie or multiple babies, triumphs and devastating losses, challenging pregnancies, and other factors change how premature birth shapes parents’ experiences. The things we all face are stress, uncertainty, and fear. Would it surprise you to learn that even parents whose preemies face relatively short NICU stays still experience guilt, grief, sadness, anger, and numbness? And that these feelings can last well after a preemie comes home and is thriving?

Having a baby in the NICU is a traumatic, life-changing event and may represent the most stressful and fear-ridden period we ever have in our lives. For that reason, parents of preemies are at risk of developing not only anxiety and depression, but also Post-Traumatic Stress Disorder (PTSD). Research has shown that 75% of parents who develop anxiety following premature birth will eventually meet the criteria for PTSD. And parents of preemies who spent 70 days or more in the NICU have PTSD rates of 23-59%, with rates reflecting how ill a preemie was during that hospital stay. Dads of preemies are actually more likely to develop PTSD long after a preemie’s birth.

Continue reading “Coping with Preemie Parent PTSD”

Honoring Changemakers at ‘Tinis for Preemies

Graham’s Foundation honored Heidelise Als, PhD, and Liza Gene Gooper, LMSW, at their recent ‘Tinis for Preemies gala in New York City. Each year Graham’s Foundation honors those who make a significant contribution to the NICU community and to improving outcomes of premature infants at this signature fundraiser benefiting the organization.


Joan Rice, Kathleen McLane, Maria Messina, Janet Roth, Bill McLane, Jude McLane, and Xena Ugrinsky

Both honorees were presented with a special award – a painting by Reece Hall, daughter of Graham’s Foundation founders Nick and Jenn Hall and the surviving twin of the organization’s namesake Graham.

MIRACLES Award Honoree Dr. Als — founder of NIDCAP (Newborn Individualized Developmental Care and Assessment Program) and Professor of Psychology at Harvard Medical School and of Boston Children’s Hospital — was chosen because she champions innovation and change in the development of individualized best care practices and tirelessly advocates for comprehensive services and education for newborns, infants and young children with disabilities and for their families.


Dr. Heidelise Als, Harvard Medical School and Boston Children’s Hospital – 2017 Miracle Award Honoree

At the event, she spoke of the challenges faced by many parents as premature birth rates steadily increase around the world. She noted that more than 50% of children born preterm show learning disabilities’ attention deficits, behavior problems, emotional issues, and school failure.

HOPE Award Honoree Cooper has been supporting families of premature babies and infants born with birth defects in the Newborn Intensive Care Unit for two decades. Today, she provides leadership for Youth and Family Partnership programs, including the Family and Youth Advisory Councils and the Senior Family Advisor program as well as Child and Family Education as a member of the Sala Institute for Child and Family-Centered Care at the Hassenfeld Children’s Hospital at NYU Langone Health.


2017 Hope Award Honoree, Liza Gene Cooper, LMSW

In 2001, she joined the March of Dimes National Office where she created and led the national NICU Family Support program, an initiative that during her tenure brought information and comfort to 300,000 families through NICUs in every state in the U.S.  


Graham’s Foundation Blue Martini, Asian Peartini, Vodka Vesper, and Black Orich Martini all made with Tito’s Handmade Vodka

Prior to the award ceremony, guests at the gala savored Asian-inspired foods and drinks at the beautiful Glasshouses overlooking the NYC skyline. A live auction provided entertainment in between speaker presentations, and included items like Gary Komarin Cake Art, Alan Spitzer original artwork, Colorado and Costa Rica getaways, and a foursome at the Bayonne Golf Club. But the star of the auction was the organization’s newly redesigned care packages — which inspired some bidders to give $1,000 or more! Tito’s handmade Vodka matched every dollar up to $2,000.

Bidders Doubled Their Awesome by purchasing Graham’s Foundation Preemie Parent Care Packages

All told, the event brought in so much support for Graham’s Foundation’s mission and helped forge new connections between influencers in the neonatology world and in the prematurity sphere.

“These signature events are more than just fundraisers,” said Graham’s Foundation president Nick Hall. “While attracting support for the mission is obviously a primary goal of our ‘Tinis for Preemies series, these special evenings also represent an opportunity for those whose lives have been touched by premature birth to connect with one another and to give back.”


Elena Medo of Medolac with Dr. Alan Spitzer and wife Elaine Spitzer

‘Tinis for Preemies was powered by Pampers with additional support from Medolac, Mead Johnson Nutrition, Dana Wechsler Linden and Larry Linden, Xena Ugrinsky and Kathleen McLane, Alira health, Mia Wechsler Doron and Mednax. Additional support was provided by Dawn Melanie Designs, Neonatology Today, The Glasshouses, Thomas Preti Caterers, ticket purchasers, auction item donors, and major individual and corporate sponsors.

Learn more about Graham’s Foundation at www.grahamsfoundation.org.

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