Newsletter with Pebbles of Hope
Every Tiny Thing's February 2018 Newsletter
It's a month of love, so let's look at all sorts of lovely NICU stories!
This month, check out:
Joanne was born at 33 weeks, and she was in the NICU over 2 months. During that time they had to endure complications of apnea & bradycardia, jaundice, and Joanne needed a blood transfusion as well. Here, her mother Samantha shares her thoughts about their NICU experience:
Joanne is approaching her first birthday and you’d never be able to tell she was a premature baby. She has almost four teeth, loves to say “mama” and “dada,” crawls everywhere and gets into EVERYTHING, finds it hilarious to clap and to smack her belly, and loves Elmo, Trolls, bath time, and play dates with two of her NICU friends, Maggie and Emma.
My daughter batted horrible reflux and bradycardia, had her car seat challenge scheduled 5 times before she was actually able to take it (stupid bradys!), had her bed angled at 30 degrees until a few days before she was discharged, and we ended up consulting with neonatologists in Dallas before we were able to figure out the right medication that would alleviate her symptoms. Now, she's an energetic, feisty 11-month-old that her dad and I are enamored with.
1. What was one of your best coping strategies during your NICU stay?
Educating myself as much as possible and getting to know the people who were taking care of my baby. I spent loads of time chatting with our sweet nurses, and wrote lists of questions to go over with our doctors and NP’s. It helped me more than I can say.
2. Is there something that a caregiver did during your NICU stay that you really loved?
Every time the nurses would create some sort of artwork for my daughter, it really lifted my spirits. For example: a picture of my daughter wearing a party hat with “Happy New Year From Joanne!” written below it, and a “These little toes are one month old!” sign with her footprints on it. Very simple and very effective.
3. What's the best thing anyone did for you that helped during your NICU stay?
One of our NP’s sat me down on a really, really difficult day and told me her personal and detailed story of when her son spent time in the NICU. Knowing that this woman (who was frequently making decisions for my baby) had been in my shoes was extremely comforting.
Is there any product you recommend for new NICU parents or for their NICU babies? Why?
The “Our NICU Journey” journals. Seriously. As a visual learner, it would’ve been so helpful to have the stats all written down and be able to track my baby girl’s progress. Also: the Owlet. You can't put a price on peace of mind!
6. Do you have any NICU-related book recommendations?
“Anchored” by Kayla Aimee. It’s one woman’s memoir of her daughter’s premature birth and it’s amazing.
What would you like the nurses/doctors/therapists/social workers to know?
Personal interactions (hugs, a hand on the shoulder) go a long way with us mamas. And little things like artwork or pictures of our babies next to their crib are incredible.
10. What advice would you give brand new NICU parents
What helped me:
1) Spending as much time as I could at the NICU. The doctors and nurses will encourage you to take care of yourself and enjoy what time you have left at home without a newborn, and while this is true, I don’t look back on any of the countless hours I spent in there with any regret. By being there, I was able to comfort my baby AND actually do something other than sit back and watch/listen
2) Making friends with other NICU mamas. They could relate to me, I could relate to them, and we knew what the other was talking about (and didn’t have to explain what things like bradycardia, desats, reflux, etc. are). I still get together with my NICU friends and our daughters play together,
3) Planning for my baby’s homecoming. I shopped for nursey décor, outfits, and toys, and my husband and I would talk about all of the fun vacations we wanted to take with her in years to come. It really gave us things to look forward to,
4) Getting to know the people who were taking care of my baby. I spent loads of time chatting with our sweet nurses and wrote lists of questions to go over with our doctors and NP’s. It helped so much
5) Reading stories and articles that I could relate to. A good resource that I follow on Facebook is Hand to Hold, a nonprofit preemie resource organization/support group. And, as mentioned, reading “Anchored” by Kayla Aimee. I HIGHLY recommend it.
Thank you --- for sharing your story! If you would like to submit YOUR NICU Success Story, head over here to answer at least 5 of the interview questions. Stories with photos are much more likely to be featured in our monthly newsletter. I can't wait to hear your success story!
Valentine's Day gifts for NICU babies
Oh, I adore Valentine's Day in the NICU! What better holiday than the one devoted to LOVE?
These 12 are this year's favorites for sweet, thoughtful, NICU-appropriate gifts for that baby or family you love.
Onesies - you can't go wrong with onesies, and these brands have sweet Valentine's messages in preemie and newborn sizes. So dress your little one up for the day! (Click on the pictures above to learn more about them on Amazon)
Swaddle blankets - why not swaddle your little one in love? Hearts are perfect for Valentines's day, and then for every day after that. A great gift that lasts well beyond the holiday. (If your baby is too small to swaddle in a blanket right now, you can ask if the staff can use the blanket as bedding for your baby's NICU crib or isolette). Pink hearts and hand-drawn hearts are so sweet!
Books - I LOVE recordable books so that parents can record their voices (of the voices of siblings and extended family) and leave the book with baby for times when they're apart. This one is perfect for Valentine's Day. And then, of course, every baby should hear "Guess How Much I Love You" because it's just about the best baby book ever.
For the bigger babies, you might consider a super adorable "costume." These are made specifically for photo shoots and there are tons of adorable outfits to choose from. My favorite this month is the suspenders & bow-tie combo from Yarra Modes.
Why not let your little girl dress up a little for this special day? A trendy look for baby girls is the "turban" and there are tons to choose from. (Side note - Do I think NICU babies need to look trendy? No. But sometimes it's just nice to do something normal and lighthearted to remember that there is still joy to be found in the NICU)
Finally, everyone loves a soft, squishy plush, and this love heart is just so adorable to keep at your baby's bedside. You may not be able to put it in with your baby, but I love the idea of having it at home to snuggle with when you're missing your baby. A gift to yourself, and one you can then use in your baby's nursery when you're all home together.
Preemies, Second Edition
Most of you have heard of this book, right? Well, to tell you the truth, I am amazed at how many NICU professionals and parents haven't heard of it.
So, if this book isn't something you're familiar with, it really is a must-know-about resource for parents. Because Preemies is the ultimate textbook for preemie parents.
- This book is a fantastic resource which covers a broad spectrum of topics that most preemie parents will need to learn about, written in a very comforting and nurturing tone.
- Topics covered include:
- Chapter 1 . In the Womb: Why Premature Birth Happens and What Can Be Done to Prevent It
- Chapter 2. Welcome to the World: Your Baby's Delivery
- Chapter 3. The First Day
- Chapter 4. The First Week
- Chapter 5. Settling Down in the Hospital
- Chapter 6. If Your Baby Needs Surgery
- Chapter 7. Finally Taking Your Baby Home
- Chapter 8. From Preemie to Preschool (And Beyond)
- Chapter 9. When Parents Have Something Special to Worry About
- Chapter 10. Losing a Baby
- Chapter 11. I Was a Preemie, Too
- The tone is very empathetic, friendly, & approachable for preemie parents.
- The lingo is not to technical, although they do a great job of explaining the technical terms preemie parents need to know about in simple and understandable words.
- Each chapter also includes a "Parents' Stories" section and a "Doctor's Perspective" section, which add great value to the author's words.
I like to think of this book in this way: imagine the nicest NICU nurse and the nicest NICU doctor (the ones you love because they explain things clearly without scaring or overwhelming), taking all of their knowledge and compressing it into one big book of knowledge.
It makes an ideal addition to any NICU's library, so if your NICU doesn't have a copy to share with parents, I highly recommend you consider buying one (maybe donating one?) for the NICU you love.
My Preemie App
Have you heard of the My Preemie app? It's a fantastic resource for parents, so take a second to learn about it and then tell NICU parents about it.
This app was designed by the brilliant folks who authored Preemies, discussed above, so I thought this month would be a great time to highlight the app they created as well.
This app is designed to be a wonderful place to track your baby's preemie journey, for those parents who prefer to keep everything digitally on an app. It serves several purposes (from their website):
- MyPreemie offers easy to understand explanations of common health and developmental issues, equipment in the NICU, medical procedures, and the specialists you’ll meet in a beautiful app.
- The daily journal comes complete with prompts that help you chronicle your preemie’s major events and milestones in text and photos, as well your own feelings. (If you prefer a physical book for journaling, Our NICU Journey is perfect.)
- Customizable to-do lists and to-ask lists help you become a better informed and more engaged participant in your premature baby’s care.
- Check your baby’s progress easily. The MyPreemie app automatically plots your preemie’s daily recorded weight, length, and head size on a custom growth chart.
What I love about this app is that it acheives a very difficult goal - it looks and feels very normal and comforting while at the same time offering significant medical knowledge and technically relevant information.
And the good news is that it's free!
I first came across the app when it was still managed by the authors who designed it, but it has more recently been acquired by Graham's Foundation which is a great organization to know about. (Learn more about them here.) Thanks to Graham's Foundation and their sponsors, the app is available for free, so grab your app today!
Pebbles of Hope
"Giving the world's smallest babies a fighting chance"
Pebbles of Hope is a very interesting organization with a unique and fantastic approach to making a positive impact on the lives of NICU babies and their families.
Their mission is to help premature babies thrive through parent education, and to reach that goal they are working diligently at producing resources for parents and NICU staff.
"Pebbles of Hope focuses on three program areas— digital training, mentoring, and mass media campaigns—with the purpose of equipping parents and other caregivers with the information and resources they need to care for the smallest babies in regions with few medical facilities."
- They have a blog which includes audio podcasts covering topics ranging from "How NICU Staffing Impacts NICU Care" to "How Does Discrimination Affect Birth Outcomes?"
- They created a series of 4 webinars devoted to preemie nutrition, which is available on their resources page. Chock full of good information!
- And they also are developing an app that's useful for both parents and NICU caregivers, available for android and iphone. (So, far the app is still in its infancy, so stay tuned
Want a little insight into why the organization got started? I highly recommend spending the time to watch this beautiful video about the founder's baby and their story.
Nurturing your Relationship while in the NICU
Relationships can bear a tremendous strain when the couple has a baby in the NICU. I love to encourage partners to look at Valentine's day as a day to reflect on each other and on how their relationship is growing and changing under these new circumstances.
While it may be great fun for you and your partner to head out for a date night on Valentine's day, some couples find that romance and couple-time is a pretty low priority during the NICU days. I think it's good to do anyway, as an investment in the relationship and as a way to remember that your baby will thrive best if both parents are feeling supported, loved and nurtured.
So allow Valentine's day to be a day to love on your baby and each other. Celebrate whatever positives you can find. And keep these in mind:
- You and your partner will very likely differ in your experiences, feelings, and ways of coping through the NICU. Everyone reacts in a unique way and that should be expected and honored. It can get so frustrating when one partner has widely different ideas and opinions about how to manage, but know that a crisis like the NICU is bound to bring up strong and different emotions and there's nothing wrong with how anyone reacts to the trauma.
- Remember to nurture your relationship. As frustrating as it can be to have a partner who has different ideas about the NICU, they are also one of the few people who truly relates to your situation. So invest in each other and you'll grow a new stronger bond through this.
- Share your thoughts, feelings, and fears with each other. Talk about it. Allow yourselves to be honest, and then use your strengths to help one another and hear each others weaknesses in order to better support one another.
- Deal with conflict in constructive ways. Respecting one another is of utmost importance. Remember, you're both coming from a place of love for your child.
- Be willing to listen. It's great to vent, and it's great to be the listening ears for someone who really just needs to get their emotions out. When your partner is venting, please resist the urge to try to fix the situation or try to talk anyone out of their feelings.
I hope your February is filled with love!
I always love hearing from readers, and every email I receive is answered personally by myself (Trish), so please reach out any time with your thoughts, newsletter recommendations, or just to say hello!
*Product mentions are not necessarily endorsed or recommended by Every Tiny Thing, LLC. Links to external sites may be affiliate links but I have not been paid by any organizations listed here for the mention. If I mention it, it's because I think everyone should know about it!