Category: In the NICU

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?

You Might Be a NICU Parent If…

There are many things about the NICU that are very unique to that situation and experience. As a NICU parent, it’s not always easy to see the more light-hearted side of things. So here is a little NICU humor for you!

You Might be a NICU Parent if…

  1. You pause awkwardly when someone asks how old your baby is before going into a 10-minute explanation to what should be an easy question.
  2. BPD, NEC, IUGR, IVH, CPAP, and PDA are more than just alphabet soup
  3. You’ve had a panic attack in the grocery store or Target when you hear a telltale beep
  4. You can rattle off your baby’s sats and stats like it’s nobody’s business
  5. Juggling a diaper bag, oxygen tank, apnea monitor, and your purse can all be done while unfolding the stroller with one hand
  6. You’ve experienced “full-term envy”
  7. You get unreasonably excited about fat rolls and double chins!
  8. You compare your baby’s birth weight and length to food items on a regular basis (for us it was 5 sticks of butter and a 20 oz. Pepsi!)
  9. You’ve purchased a chest freezer just to store breast milk

  10. You regret not buying stock in a hand sanitizer company

  11. There’s an immediate bond with strangers when you hear any mention of prematurity or a NICU stay
  12. You don’t think of a jumping animal from Australia when you hear the word “kangaroo”
  13. You’re well-versed in how to increase calories in food for your little one
  14. The Ultimate Mama (or Papa!) Bear makes an appearance on a regular basis!
  15. You are well aware of the reality of three steps forward, two steps back
  16. The honeymoon period is something more to you than just a vacation taken after you get married
  17. You use medical equipment around your house for alternate uses (I’m looking at you, 60-cc-syringe-turned-bathtub-toy!)

  18. You’re able to think in grams and milliliters

  19. “Wireless” means something different than connecting to the internet without a cord
  20. You’ve experienced hibernation and isolation, and you’re neither a bear nor an inmate
  21. You check to see if your child is still breathing while he sleeps…well into the teenage years
  22. A 7-pounder looks gigantic!
  23. You take being a germophobe to a whole new level
  24. You’ve slept on hospital benches, chairs, and floors, and not given it a second thought
  25. Your baby was weeks old before you got to hold her
  26. You weigh your child in pounds and ounces well into the toddler years, and possibly into elementary school
  27. Your hands have been raw to the point of bleeding from washing them so much

  28. You are able to distinguish between all the beeps and alarms

  29. Your first reaction to your phone ringing while you’re away from the hospital is fear
  30. You’re amazed at how naturally the medical staff can take care of such tiny, fragile babies
  31. You have a greater appreciation for simple things like a hot cup of coffee, a shower, a comfortable chair, or a home-cooked meal
  32. Your child’s care team has become part of your family
  33. Circling a parking ramp looking for a spot doesn’t make you dizzy anymore
  34. You’re on a first-name basis with everyone at the hospital, custodial staff included

  35. You are stronger than you ever imagined, tougher than you’ve ever been, and a different person walking out of the NICU than you were when you walked in. You’re a NICU Parent!

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What NOT to Say to a Preemie Parent

When someone is going through a crisis or an illness, it’s often difficult to know what to say. A family in the NICU is no exception. What do you say to someone whose baby was born early, with complications, or in an unexpected or difficult way? Well, we’ll get to that in a minute. First, I want to share some examples of what NOT to say. (And if you’re a NICU parent, I’m sure you’ve heard your share of these!)

  • “Everything happens for a reason.”
  • “What doesn’t kill us makes us stronger.”
  • “Just think positively!”
  • “At least you have other healthy kids.”
  • “You could still have another baby.”
  • “This too shall pass.”
  • “She wouldn’t want you to cry.”
  • “I’m so sorry.” (** See caveat below)
  • “Well, my friend/cousin/sister-in-law/neighbor’s dentist’s uncle’s hairstylist’s mail carrier had the same thing.”
  • “You’re so strong; I could never do this.”
  • “What can I do to help?” (*** See caveat below)

Instead, here are some alternative ways you can show your support in a more compassionate way.

  • “I don’t know what to say, but I’m here to support you.”

To me, someone acknowledging that they just didn’t know the right words for the situation was much better than a platitude.

  • “Congratulations!”

Someone just had a baby! Wow! That’s awesome. Congratulations. That was one thing we didn’t hear often enough when our little guy was born.

  • Just BE with them.

You don’t even have to talk. Sometimes your presence is enough. A hand on a shoulder or a hug can make someone’s day.

  • Let them talk.

This builds on just sitting with a NICU parent. They have a lot on their minds and plates, and sometimes they just need to talk things through. It doesn’t require a lot of feedback on your part, just a good listening ear.

  • “How are you doing?”

With a baby in intensive care, it’s easy for parents to devote all their time and energy thinking about and caring for their baby. Doing a check-in to see how mom and dad are doing can be a good reminder for them to do even basic things like eating, drinking enough water, or sleeping.

  • “I’ve been thinking about you.”

This one, to me, is especially important the longer the NICU stay. Once the “novelty” of a premature infant fades a bit, NICU families don’t want to be forgotten. If they are still on your mind, check in with them and let them know!

  • ** “I’m sorry you’re going through this; I know it’s not what you expected.”

Instead of saying you’re so sorry their baby was born prematurely or with medical complications, tell them congratulations and then that you’re sorry they’re going through this. You shouldn’t be sorry that they had their baby!

  • *** “Can I bring you a meal? What kind of coffee do you like? What time can I pick your kids up from practice? Can I pick up your mail and bring it to you when I visit?”

When asked an open-ended, “What can I do to help,” NICU parents may not have the mental energy or be thinking clearly enough to answer the question or even know what would be helpful. It’s easier for them to think about a specific offer and be able to say, “Yes, that would be great!”

Be a “Do” Rather Than a “Don’t”

If you have a friend or family member experiencing life in the NICU, hopefully these examples will help you be the best support system you can be. While you probably still won’t have the “right” thing to say in every circumstance, being more mindful of some of the pitfalls may help you steer clear of the “don’ts.”

And what if you are a NICU parent? Well, try to give people a little grace. It is unlikely people would say things from the “what not to say” list intentionally to hurt you; they just don’t know what to say. It’s human nature to want to fill the space and silence with talking, and often people don’t know the “right” thing to say, so they just say something. What matters is that there are people there to support you!

5 Ways to Participate During NICU Rounds

There is a big push within health care these days toward patient- and family-centered rounds. What exactly is that? NICU rounds are when your baby’s medical team comes each day, typically in the morning, to discuss what has been going on and make a plan for the day. The “patient- and family-centered” part is where you come in! Many hospitals see the parents as a vital part of the child’s healthcare team. You are the people who know your little one best. You have that “mommy instinct” that you may not be able to explain, but you know what your gut is telling you. It’s encouraging that healthcare is seeing the family as a key link in the overall care of the child.

How can you make the most of NICU rounds to both get information and provide input?

These 5 things may help you out in NICU Rounds!

          Ask Questions
  1. Ask for an explanation when you don’t understand something. Medical-speak is like a whole different language. Even if you have some medical background, the NICU seems to have its very own dialect. There are so many abbreviations and acronyms that will be unfamiliar at first. Over time, you’ll learn the “NICU language,” but don’t ever hesitate to ask questions during rounds.
    Share Your Observations
  2. In line with family-centered rounds, don’t be afraid to speak up with your observations. You are the one who knows your baby the very best. You may have primary nurses who care for your baby a lot, but you are likely still there more than anyone and have learned to read your baby’s cues and signals. I learned early in our NICU journey that Jacob needed changes in his meds, oxygen, nitric, etc. to be slow and in small increments. He just didn’t tolerate big or quick changes. Share your insights and thoughts with your baby’s care team. You are a valuable source of information for them.
    Write Things Down
  3. Write things down. I kept journals of Jacob’s entire NICU stay. In them, I noted his doctors and nurses each day, milestones, my questions, and the information reported at morning rounds. In high-stress situations, we tend to have decreased ability to retain information (at least that was true for me!). Even if you think you’ll remember something a member of the care team says, write it down. Not only will it help you in your day-to-day journey in the NICU but you will also have it to look back on down the road. Jacob is in elementary school now, and it’s only been within the last couple of years that I felt emotionally able to go back and look through those tough days and recall what was going on. If you’re a scrapbooker, this is especially nice. 🙂
    Utilize the Nurses
  4. Rely on your child’s nurses. This one is pretty easy to do since you probably spend a lot of time with the nurses. Having someone else there for rounds that you can talk with afterward is nice for any additional questions, explanations, etc. I only missed two days of rounds during Jacob’s 126-day NICU stay, but on those days, his nurses were prepared to share all the info with me that they knew I’d be writing down in my journals.
    Get to Know the Team
  5. Get to know all the members of the care team that participate in rounds. We were in a NICU at a large teaching hospital, so morning rounds included a crowd of people: the neonatologist, the neonatology fellow, a resident or two, a couple medical students, Jacob’s nurse, sometimes the charge nurse, the dietician, a respiratory therapist, a pharmacist, and sometimes a physical therapist, music therapist, occupational therapist, or child life specialist. Over our NICU stay, we got to know all of these people, and they became additional sources of information for us. And many remain our friends today!

So while NICU rounds can be intimidating and overwhelming, there are ways that you can participate and make a very real contribution in the care of your precious little one.