Our family spent our first set of fall and winter holidays in the NICU. As a tracheostomy patient, our daughter graduated to the PICU. We have celebrated every holiday at least twice in a hospital…so we know how to party! Here are a few things we did to make the most of the holiday seasons in the hospital.
The NICU taught me that life is a gift, not a guarantee. I was used to being healthy. It had assumed that I’d have a normal pregnancy. When I went into labor four months early, everything changed. I used to trust that whatever I did, the universe would take over and make it right. Now it felt like when it came to bad luck – tag, we were it. However, hardships do not come without gifts.
In the NICU, I clung to any word that was positive from doctors and nurses. My daughter Zoey was tagged with a lot of labels meaning “failure to thrive.” I wanted reassurance that she could survive and have a good quality of life. While they never gave me the hope that I asked for, other gifts came. Volunteers made holiday tags for the preemie pods, and her tag read Love. I radiated as much love as I could for her, and then I noticed something. While the NICU staff feared giving me false hope, I saw how the doctors and nurses were loving toward her. They would talk to her and smile. Love is powerful medicine.
It may feel that the universe tagged you for hard times right now. Celebrating doesn’t come as easily. You get whatever comes your way, instead of what you ask for. Keep trying. Start with a gift tag, a word you need more of: hope, love, luck, patience, faith, wonder, strength, wisdom, kindness. Create tags for your loved ones, and yourself.
The Gift of Wishes
After five months in the NICU, I made little notes of things I wanted our daughter to experience once she was home. Splash around in a bathtub (since sponge baths were all she knew). Make our own Play Doh. To see rain and snow. To feel grass under foot. To make handprint and footprint paintings. To see the animals in our backyard. To enjoy favorite foods. To hear and feel live music.
I expressed the wishes I had for her by telling her about it and finding pictures to share. I taped nature and family photographs two at a time to her pod. My deepest wish was for her to experience the world and people I loved. At first it all had to be done within the confines of the NICU and PICU, so I got creative. Occupational therapy brought in textured toys and teethers, music therapy visited. One by one, it felt like my wishes were coming true. Spend some time sharing your wishes!
The Gift of Guessing
While in the NICU, didn’t you wish there was a countdown so you knew exactly when you got to take your baby home, or when your baby would meet a milestone? It’s always a guess, and a surprise! My husband Mike made guessing pools to lighten the mood. People guessed when our baby would poop next, drink a full feed, gain the next pound. Whoever guessed correctly would win snacks, a bottle of coffee, or a pound of candy. Forget the big game, let’s see if she poops tonight! The guys bonded over this tradition – male nurses, RTs, janitors, night shift residents. While you’re waiting for the next win, you may as well have fun guessing.
The Gift I’d Get You From a Tacky Catalog
When it came to gift-giving time, we’d catch ourselves saying, “I’d love to get you this, but we can’t afford it now.” It was frustrating that we couldn’t spend the way we used to, or wanted to. One night, I recalled a game we used to play as kids where we would hold a catalog, preferably with alarmingly tacky items, flip open a page, and choose something from the open pages as a gift to the other person. The sillier the better. Sometimes we found an expensive or luxurious item that we’d actually consider getting the other person, or something sweet that we’d say “aw” to, and then move on to find the absurd.
I’m relieved that we didn’t have money to waste on these things. We realized that laughing together, being sarcastic, and showing thoughtfulness, was priceless. The game was better than the actual gift.
The Gift of Appreciation
Teams of people helped us over the years. Figuring out how to show our appreciation took creativity. We made ornaments with my daughter’s handprint in a mitten or her footprint in a stocking. Her pod was across from the NICU library, where I read, so I made photobooks to remind the staff that what they do matters. I made jewelry and lanyards, decorated pens and made boo-boo wands. Selfies with the baby, photo cards and ornaments were a favorite. Working through the holidays can take a toll on the spirit, just as needing care can. A simple thank you goes a long way.
The Gift of New Traditions
What I learned from celebrating holidays in the NICU is that you get to make memories wherever you go. You get to make up your own traditions. It’s a tradition now that I make up calendars of wishes and events. I make one-word tags, personalize gifts with inscriptions. We have fun guessing. We play the Tacky Catalog Game. We show appreciation. When we don’t feel like we have enough, these traditions remind us that we do.