Tag: Journal

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?

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.