Month: November 2018

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!

SaveSave

SaveSave

SaveSave

SaveSave

SaveSave

SaveSave

SaveSave

SaveSave

How to Support a Mom on Bed Rest

Many of you started your NICU journey as a mom on bed rest. Maybe it was in the comfort of your own home; maybe it was in the hospital. Maybe it was for a few days; maybe it was (gulp!) a few months. No matter what the case, bed rest can be a scary time because it means something is not going as planned with your pregnancy.

If you’ve experienced bed rest, you may have had people ask what they can do for you. If you’ve had a friend on bed rest, you’ve probably wondered how to help. Below is a list of ideas you can share with people who ask how they can support you on bed rest. You can also use it as a source of ideas for friends who might be going through the same thing.

For anyone on bed rest:

Items more specific to hospital bed rest:

There are also non-material things that might help you when you’re on bed rest or ways you can help a friend on bed rest.

Consider these other ways to help:

  • Make meals for family at home
  • Make freezer meals
  • Clean or pick up the house
  • Help prep the baby’s nursery or assemble furniture
  • Run errands, go grocery shopping
  • Drive other kids to school, activities, etc.
  • Keep the bed rest mama company
  • Holiday prep if bed rest occurs over a holiday

If you were on bed rest, what were things that you really appreciated?

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.