Month: December 2018

Christmas in the NICU: Holiday Encouragement

This time of year can be hard, regardless of your situation. But if you are experiencing Christmas in the NICU, it can be exceptionally difficult.

Traditions

Our son was born November 19, so we spent Thanksgiving, Christmas, New Year’s, Valentine’s Day, and St. Patrick’s Day in the NICU. I’ll be honest: Christmas was the most emotionally challenging. Our family has a lot of Christmas traditions – driving around to look at festive lights, Christmas Eve candlelight service at church, the kids opening one gift on Christmas Eve, stockings and presents Christmas morning, and a big Christmas dinner of ham, turkey, and all the fixings.

As an add-on “bonus,” my birthday is also on Christmas, so we typically spend the late afternoon and evening celebrating my birthday with leftovers, appetizers, cake/ice cream/presents, and family games. Being in the NICU was difficult, not only because we were dealing with a fragile, sick, little guy, but because of the disruption to these family traditions.

Our Christmas in the NICU

How did we handle it? We live about 25 minutes away from our NICU, so we actually hosted Christmas at our house (which we had never done and haven’t done since). Our families took care of everything from planning and cooking the meal to figuring out our gift exchange. We spent some time “doing Christmas” and a lot of time in the NICU. Honestly, my bandwidth at that point consisted of pumping and sitting in the NICU with Jacob. While part of me longed for the traditions I love, part of me couldn’t muster up the energy to even care. And that was OK.

We put a few decorations up in Jacob’s NICU room, and there were decorations throughout the hospital. At our hospital, many organizations make donations to the NICU around the holidays. We received a Norfolk Island pine, tree ornaments, a tiny Santa hat, books, and holiday treats. These things meant a lot at a time when we weren’t really feeling the Christmas spirit. There were also donations of food for families on Christmas Eve and Christmas.

I know that our strategy isn’t possible for everyone. Maybe you live far away from your baby’s NICU. Maybe you don’t have family nearby. Maybe you didn’t even have a chance to do any Christmas prep. Maybe (probably!) everything just feels “too much.” 

Encouragement for You

While I wish I had magical “how to enjoy Christmas in the NICU” advice, I do not. What I can offer you, though, is an, “I get it.” I understand how difficult it is. And overwhelming, and sad, and unsettled. You may or may not get to see your family. You may or may not get to partake of your Christmas traditions. You may or may not get a holiday meal. You probably don’t care about much of the trappings of the season as your focus is on your NICU baby.

So I encourage you to let some things go, adjust your expectations, spend time with your baby, and spend time with your family if that’s an option and something you want to do. And know that next year will be a very different Christmas. You will always remember your NICU Christmas, and it sure won’t stand out as “the best Christmas ever.” But one day, with time, I hope you can look back on it as a marker of just how far your little one has come.

Photo credit: St. Davids Womens Center of Texas

3 Things I Would Have Done Differently in the NICU

With time and perspective come wisdom. Knowing what I know now, there are some things I would have done differently during our NICU stay. It’s interesting to think about having “regrets” about a NICU stay. But here you go – here are the three things I would have done differently!

Attended the NICU Parent Group from the start

Our NICU has a weekly time for parents to get together. It is sponsored by social work, child life, and music therapy on a rotating basis. Many NICUs have something similar for their current families. I went to our parent group, but not until we were two months into our stay. I wish I would have started going from day one – or at least week one!

It was great to meet other parents (mainly moms, but some dads) who were walking our same path. Although our family and friend support was amazing, they didn’t really “get it” when it came to our NICU stay. They hadn’t walked in our shoes. While they were very sympathetic, it wasn’t until I met moms from the parent group that I really found that empathy from someone on our same journey.

There is a lot more online support than there was eight years ago, but don’t discount the impact of meeting people IRL! And I would submit that the friendships you form in the NICU will last for years to come.

Made self-care more of a priority

It’s easy to completely immerse yourself in your NICU baby, cares, pumping, tracking stats, etc. And while it seems like stating the obvious, you need to take care of yourself, too. It’s the old, “If you are traveling with a child, secure your own mask first, and then assist the other person.” Basically, take care of yourself so you can better take care of your baby.

I had an eye-opening incident about two weeks into our NICU stay. I had a bad headache that I just couldn’t shake. My husband was encouraging me to drink water, but my head just wasn’t getting better. We went to labor and delivery to talk to a nurse who had taken care of me there. She ended up putting me in a room and getting me hooked up to an IV. I proceeded to get 2 liters of saline! I guess I was “a bit” dehydrated!

My point is: take care of yourself. Stay hydrated (both for your health and your milk supply), try to get enough rest, eat healthy meals, and give yourself permission to take breaks. Whether it’s going for a walk, reading a chapter in a book, knitting, talking with a friend, or going home to sleep in your own bed, do something for yourself. These things will not only help you physically, but they’ll be good for your mental health, too.

Had greater transparency on our Caring Bridge page

First, I would strongly encourage you to document your NICU journey. That may be a Facebook group, a group text or email, or something designed specifically for tracking a medical journey such as Caring Bridge or Post Hope. We opted to use Caring Bridge, and shortly after our son was born, I created a page for him.

To me, journaling and writing updates served a dual purpose: it allowed me to do an “information dump” to provide a large number of people with updates instead of having to repeat everything over and over. It was also therapeutic for me to write about what was going on, our ups and downs, and capture the details which I knew would be right out my head with post-pregnancy-brain and mommy-brain!

But what would I do differently? Well, I would try to be more transparent. There were several times where we almost lost our baby. While I didn’t totally gloss over the bad days, I wasn’t as open as I could have been. I wish, in retrospect, that I had captured more of what was going on, what we were feeling, and the challenges we were facing. At the time, I didn’t want to seem overly dramatic and come across as attention seeking. Now, I wish I had more of my raw emotion captured of those hard days, not for me to dwell on and re-live, but those days are as much a part of our NICU story as the good days and milestones.

While I wouldn’t choose to have another NICU stay, I would do these few things differently, knowing what I know now.

Do you have anything you would have done differently during your NICU stay?