We recently had a chance to ask Trish Ringley, a nurse and the founder of both Every Tiny Thing
and Hello Preemie
, some questions about what has inspired her to create products and resources for preemie parents. Here’s what she had to say:
How did your work as an RN inspire Every Tiny Thing? What need did you see that wasn’t being met?
As a bedside nurse, for years I was pretty clueless about the enormity of the struggle preemie parents truly face. Parents so often put on their best face when they’re with their baby in the NICU, trying to be strong, which means the staff may not have any idea how much they’re suffering. I know I was in the dark about it until I decided to start a blog about the NICU. That’s when I started reading more online articles, participating in preemie forums and reaching out to preemie families. That’s when I started to learn more about how truly difficult it is for families.
So I’ve learned more about what parents are really craving away from the bedside. Through emails and meetups, through online forums and coffee dates with friends, I’ve learned that parents feel alone, confused, under-informed and extremely stressed, regardless of the severity of prematurity.
There are so many needs not being met, it’s hard to even know where to begin. I wanted to help make the NICU space feel more welcoming, because for me as a nurse it is a welcoming place, but I know for parents it isn’t. I saw parents being left out of so many fun newborn experiences, like spending time in a nursery that feels comforting, and I knew it could be helped with a little bit of creativity. So NICU Crib Art was born, and then I just kept on creating whatever new ideas I dreamed up.
How did the response to Every Tiny Thing shape the development of Hello Preemie?
With Every Tiny Thing, I wanted to create items that bring joy to parents. It was the outlet for my creative side, and it was about making products to comfort any parent in the NICU, not just preemie families.
But the truth is that the vast majority of my customers and followers are preemie families, and the needs of preemie families are unique. So I decided to create a new site devoted 100% to preemie families through raising awareness of all the resources that are available to preemie families.
Two things I kept hearing over and over and over again were:
#1 -“I wish I knew about that back when my baby was still in the NICU.” Whether they’re talking about a journal to write in or a support group to join, too often parents don’t know about a helpful resource until well after it would have been most helpful.
#2. “I stayed away from the internet because I didn’t want to be scared or overwhelmed.”
So it became my mission to create a positive and inspiring place where parents can learn all about everything that’s helpful on a preemie journey in a timely manner. Whether it’s products to buy when your baby is still in the NICU, books to read, support groups to join, questions to ask, survival strategies to try, words to use when talking with friends and family… if it’s gonna help a preemie parent, I want to share it.
There are a lot of resources out there – what sets Hello Preemie apart? What special role does it fill in a parent’s journey?
You’re so right – there are TONS of resources out there! My goal with Hello Preemie is to inform preemie parents about all of them.
What sets Hello Preemie apart are a few things:
1. I am committed to focusing on the positives. Parents tend to stay off the internet when they need help with their preemie because they can’t handle the scary stories, the worst-case-scenarios, the tragic outcomes. They just want to stay in a place of positivity and hope, and I believe they deserve that. Unfortunately, their avoidance of online research is what keeps them from learning about so much of what’s available to help them. So I want to build a site where families feel safe, where they know we’re gonna stay on the positive side, sharing successes and inspiring each other.
2. I want to share everything – not just my ideas, not just products to buy, not just groups to know about, but all of it. Everything I think preemie parents will love to know about, I want to share.
3. I bring to this project my 20+ years NICU nursing experience which I think is unique and helpful in its own way. I’ve cared for thousands of babies and their parents in the NICU over my career. That breadth of experience, coupled with technical knowledge about prematurity and the workings of the NICU, plus a passion for advocating for parents allows me to bring a unique perspective to the world of helping preemies and their families.
What forms of support are NICU families still not getting and why?
Some hospitals are doing amazing jobs, and it’s important to keep that in mind. But it’s easy to be discouraged, because all too often parent’s aren’t getting the support they deserve. In many instances, they’re not getting included in their baby’s care as often and as early as they could be. They’re not being connected with other parents so that they have someone to talk with. They’re not being taught about PTSD, why they may suffer from it and how to get help with it. They’re not empowered to be an integral part of the team caring for their baby. They’re separated from their babies at a time when bonding and togetherness are crucial.
In my opinion, it takes our American model of health care a long time to adjust to new research and new ideas, particularly when it comes to the more emotional aspects of medical care. We’ve made tremendous advances in saving babies, and ensuring they have the best long-term outcomes medically, but there’s still so much more to do to support the emotional well-being of the entire family.
But it’s not all bad – things are getting better every day! There is great emphasis now on developmentally supportive care in the NICU, family centered care, skin-to-skin holding & use of breastmilk and it’s really making a positive difference. There are organizations like Graham’s Foundation and many others out there working to make it better for preemie families every day. The key is making sure parents know all these things, and that’s why I’ve started Hello Preemie – to ensure that all parents know what’s possible.
Do you foresee yourself running Hello Preemie yourself for the foreseeable future or is your hope that it will grow into a project with staff and multiple initiatives?
I envision running this website on my own for the foreseeable future. While I definitely need help with some aspects, such as graphic design and accounting, I am the type of person who loves to tackle new challenges, learn new things, and I’m loving the process of growing this business on a very personal level.
When a parent first comes to Hello Preemie, what’s the best way for them to use the site?
Most of the exciting action with Hello Preemie is on Instagram. It’s where I reach out to preemie families with a feed that is inspiring, fun and positive. It’s becoming a place where parents are supporting each other, sharing discussions and ideas. Every blog post I write is announced there, too, so it’s the best way to keep in the loop.
But for everyone who’s not on Instagram, visiting the Hello Preemie website and reading through the blog posts is the next best thing. Actually, when you’re at the website, I’d definitely recommend signing up for the newsletter. I’ve found a way to deliver only the emails that are relevant to wherever you are on your preemie journey. So if you’re a parent of a preemie who is still in the NICU, you’ll receive a newsletter with information just for that. If your preemie is home from the NICU, your newsletter will be filled with useful information for that part of your journey. And for everyone else, the “friends and family” version of the newsletter offers great information for supporting parents of preemies at any stage of their journey.
What will success look like for Hello Preemie? How will you know when you’re truly fulfilling your purpose?
I have to say that it already feels successful because the connections I’m making on Instagram are already so inspiring. Every day, I hear from new parents with questions I love to answer, I learn new tips & tricks that I can’t wait to share. So even if Hello Preemie didn’t grow much bigger, it’s still a success in my mind.
But I have big dreams for Hello Preemie, hoping to inspire and teach ever more families when they need the help. So I’m looking forward to growing my Instagram following, and possibly even partnering with companies who are relevant in the preemie world. Paid sponsorships will allow me to keep the site running and growing. But here’s the important part about that – because I am in charge here, I get to decide who I will partner with and who I won’t. I only mention products and work with brands that I feel awesome about. I’m not going to try to make a buck if it means working with companies I don’t admire and believe in.
The best way I know I’m fulfilling my purpose is when I hear a preemie mom or dad reach out to say that my words have helped them. That’s what it’s all about. There is nothing better than hearing that I’ve helped someone through this tough time.
Some days it’s easy to feel that it’s not enough. Hello Preemie can’t make every preemie healthy, I can’t make every journey easy, and I can’t make prematurity go away. But I try not to let that stop me from doing what I can. If I can make a family’s day a little brighter, or if I can share a bit of knowledge that helps them feel more empowered, it’s been successful. If I can help them feel a little normal, as if they have a friend who understands and is here to help, it’s been successful. If someone recommends Hello Preemie to another preemie parent, it’s been successful.
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