Hand to Hold's Official Blog: Written by Parents for Parents

Christmas in the NICU; Reasons to Celebrate When Our Hearts Are Hurting

James' nurse helped us set up some photo opportunities leading up to his first Christmas.

James’ nurse helped us set up some photo opportunities leading up to his first Christmas.

There is no denying that the Neonatal Intensive Care Unit (NICU) is one of the most difficult places to be over the holidays. Finding joy and ways to celebrate in a place filled with so much uncertainty and fear can feel next to impossible. I know it did for us at first.

For many, Christmas is a time spent with family, surrounded by love, and rich in tradition. Expectations are high as we try to achieve impossibly perfect holidays. Perhaps your family bakes dozens of cookies to share with friends and relatives. Maybe making the perfect Gingerbread House is a treasured family activity. Or you have a light display that rivals all others in the neighborhood. Whatever your list includes, I’m fairly certain that being in the hospital is not only not on the list, but has completely changed your holiday experience.

Christmas card photo in the NICU.

Christmas card photo in the NICU.

My son, James, spent his first Christmas in the NICU. He was nearing the end of month five as Christmas approached. At our house there was no Christmas tree. There were no outside lights or decorations of any kind. There was nothing that gave a hint to this special time of year. Our Christmas was going to be very different. It certainly wasn’t the first Christmas we imagined for James. We slowly discovered, however, that different didn’t have to mean bad. Different has a purpose, too. It helped us focus on the things that truly mattered; the biggest one being that James was still here and still fighting. Our focus became thankfulness, and there was much to be thankful for.

James' nurse took the time to create a festive bed for him to lay in.

James’ nurse took the time to create a festive bed for him to lay in.

We found ourselves in the hospital again for James’ third Christmas. This time he was in the Pediatric Intensive Care Unit (PICU), sedated, and on a ventilator. Again our focus became thankfulness, because, again, he was still here and still fighting. A welcome side effect of a thankful heart is the ability to spot moments of joy, even during the most difficult days. This was another Christmas that was nothing like we imagined it would be, but we found small moments to celebrate.  Joy through the hard times can be difficult to see at first, but the more you look for it the easier it is to find.

We created beautiful memories with James each Christmas he was in the hospital, and found so much joy in the experiences we shared with him. If you find yourself in the hospital at Christmas, hang in there. It will not be the Christmas you imagined, but you will be surprised at how many moments you will find to celebrate when you look for them. I encourage you to focus on the things you are thankful for, no matter how small they seem at first. It will help you to see the joy. Moments of joy help to make the unbearable bearable. Isn’t that all we really need, a way to get through the hardest days? I  hope these suggestions will help you create some beautiful memories with your little one.

  • Christmas decorations in the NICU.

    Christmas decorations in the NICU.

    Decorate. NICU/PICU/Hospital regulations differ greatly, but ask what is allowed. In the NICU we hung a stocking for a few hours on Christmas Eve. We were surprised to learn we could have a small tree with lights  in the PICU. Both helped soften very sterile environments, and in the process, brought smiles to many faces. If decorations aren’t allowed, something as simple as a red or green blanket for your child to lay on can make a huge difference.

  •  If you have an older child in the hospital, find a photo from a healthier time that shows off their personality, and hang it where doctors and nurses will see it. Let them see who it is that they are caring for.
  • Wear Christmas pajamas while you visit on Christmas Eve. Involve other families. Chances are they will jump at the chance to share a special holiday experience with you.
  • Something as simple as singing Christmas songs (I did this rather than the usual lullabies), and reading Christmas stories can help lift your spirits. We found an especially beautiful copy of ‘Twas the Night Before Christmas to read to James in the NICU, and will have it to enjoy for years to come.
  • Reach out to a fellow NICU/PICU family and plan a special meal away from the hospital. Our Christmas Eve meal with a fellow NICU family is one of our most treasured Christmas memories.
  • We spent lots of time singing Christmas Carols and reading books, and shared some very special moments.

    We spent lots of time singing Christmas Carols and reading books, and shared some very special moments.

    Have a special food that you look forward to each Christmas? Instead of skipping it, bring it to the waiting room. We brought our traditional Christmas morning cinnamon rolls to the waiting room both times, and shared them with other families spending Christmas in the hospital.

  • If your child is stable enough, ask your nurse to help you take Christmas photos. They would love to help make the day special for you and your child.
  • There is no time limit on celebrating at home. James finally came home at the end of January last year, and our Christmas tree stayed up until February.
Santa visited James in the PICU.

Santa visited James in the PICU.

Christmas spent in the hospital is not what anyone wants, but by changing our perspective a little, and making the best of the situations we find ourselves in, we can still experience moments of great joy and find plenty of reasons to celebrate. I wish you all much joy and peace throughout the holiday season, and a very Merry Christmas.

Alison Epps About Alison Epps

Alison (TX) has one child, James. He was delivered by emergency c-section at 22 weeks 6 days gestation, he weighed 15oz. and was 10 ½ inches long. He endured a 160-day NICU stay with 4 surgeries and multiple complications. He is now an active 5 year old who recently started Kindergarten! You may connect with her on her personal blog, Facebook or email, 22w6d@gmail.com. She hopes to encourage change in hospital policy so babies born at less than 23 weeks gestation will be given a chance at life.

Comments

  1. My son, Jude will be spending the holiday season in the NICU. He was born at 28 weeks at 2.9 lbs due to preeclampsia. Reading this makes our feelings seem more normal. Thank you so much for writing this article. I actually can’t thank you enough.

  2. What a lovely post. My son was born at 23w2d exactly 2 weeks before Christmas. It certainly didn’t feel like a festive time for us and we really had no desire to celebrate. But I do have wonderful memories. My first kangaroo care was on Christmas Day when he was exactly 2 weeks old. That is a gift I will never forget. We also received some gifts from former NICU families and we are committed to providing the same for future families spending time in the NICU over the holidays. We are very fortunate that our son came home to us after 134 days. We know how truly blessed we are and how everything he does, every milestone he meets, feels like such a victory. And I’d be with you in your fight to save early babies. I know there are many hospitals that won’t intervene before 24 weeks. We were discouraged by hospital staff, but were determined to give him a chance. I couldn’t imagine an alternative.

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