You know your baby better than anyone. Speak up, please. They need you!
~ Carley Guill, For the Littlest
I'm so excited to share my interview with Carley Guill from For The Littlest. It was great to get to know more about her and her amazing NICU advocacy work. Make sure you check out her blog and connect with her on Instagram. ~ Ali
How Did For The Littlest begin?
When I was ten years old, my little sister was born prematurely with an obstructed bowel. My family spent 80 days with her as she battled through the NICU, surgery, feeding tubes, ostomies, and constantly beeping IV pumps. It was so foreign to me, but it became so formative. I’ll never forget my mom telling me that there are sick babies that only get held by the nurses, because their families never come; there are babies that get the private room in the back because they’re so sick; there are parents that can only see their babies once a week because the whole region gets transferred here and they can’t pick up and live upwards of two hours away while their baby’s life hangs in the balance. I took what my mom told me and ran with it, because it touched my heart and bothered me at the same time. That's how For the Littlest was born! Though there were good things and bad things about my experience, the NICU is full of miracles, and I want people to know that there are little warriors out there who need advocates to demonstrate awareness and to fight for them. For the Littlest seeks to spark hearts for NICU advocacy, because we have the power to treat these babies and give their families hope.
What do you want people to know about life in a NICU? What are the biggest misconceptions about NICU babies?
I want people to know that it isn't all bad behind those doors. So often there are nurses and doctors who genuinely love on these babies and care for them so deeply. I know that the thought of such small and seemingly fragile babies is scary for most people, but the NICU can be a force for good in people's lives. It isn't all rainbows and miracles, but goodness, we need to rejoice as much as possible when it is!! The more we know and support our NICU's as advocates, we improve care for babies and we make them feel known and loved.
What kind of impact do you hope that your platform (i.e. writing, speaking, research) can have in the NICU community?
I hope that For the Littlest can spark a fire for NICU advocacy in people's hearts! There are things that have changed in the way things are done since my family's experience, but there are a lot that haven’t. There are still disparities in distribution of qualified NICUs; disparities that force parents and babies to separate and impede healing. There are still some institutions with visitation policies that alienate siblings and family members. But luckily there are still good nurses, good doctors, and generally good people working in these NICUs, so there is still hope too. Through this platform I hope to change the bad things for the better and show off all of the good things!
What inspires you to keep advocating for preemies?
NICU babies and their families give me so much hope. I look at my little sister and how much she's thriving and I remember that one day, she was small and fragile like them too. I have so much hope that there's a light at the end of the tunnel for these babies and these families, and I know that advocacy brings that light even closer.
What are some of your favorite tools, resources, or gadgets that make a NICU journey easier?
My NICU journey was fueled by McNuggets and Top Chef reruns, so I do highly recommend those! Also, I recommend as much of a support system as you can get, even including social media, make it easier - no one is alone!
Cooking with children can be a very rewarding experience in many ways. It can teach little ones very useful and valuable lessons in the kitchen, and it is a true bonding experience, one that might not always be felt in the moment. But without a doubt, it is one that is creating memories that will linger in your child’s mind well into adulthood.
Cooking with kids is something that you either embrace or totally shy away from. In our minds we imagine it to be this wonderful bonding time with our kids, filled with laughter and collaboration to create something special together in the kitchen. The reality, though, might look a little bit different; a messy kitchen, mom telling little kids to wait for directions, ingredients being dropped on the floor, stressing over things not getting done properly, or the potential of someone getting hurt. The majority of time, it may end up being something that we do not look forward to repeating in the near future.
Yes, cooking with children will be messy and a little crazy, but with a little planning we can definitely control how stressful it ends up being for the adult in charge. Cooking with children can be a very rewarding experience in many ways. It can teach little ones very useful and valuable lessons in the kitchen, and it is a true bonding experience, one that might not always be felt in the moment. But without a doubt, it is one that is creating memories that will linger in your child’s mind well into adulthood.
Our kids enjoy helping in the kitchen, and they benefit by learning an array of lessons from getting involved in this activity. Lessons can range from enhancing fine motor skills and teaching kids practical life lessons in reading, math, and organizational skills. It’s also a way for them to work on their creativity and independence. We like to give them input on what they want to cook so they have a voice, but it is also important to include them in the process of cleaning up, so they can see and practice the cooking process in its entirety. Cooking together gives you the perfect opportunity to remind your kids about the importance of hand washing and good hygiene when dealing with food.
Below we compiled a list of some skills that kids from different ages can learn from being involved in cooking activities.
Preschool aged kids:
The benefits of involving your kids in cooking activities far outweigh the stress. With a little bit of planning and a few helpful tips and tricks, you will be able to enjoy the process as much as your littles ones do.
Kid’s Choice 2 Egg Omelet
(Serves 4; Ready in 45 minutes)
4 teaspoons milk
1 cup cheese, shredded
1 cup ham, cooked and diced
1 cup spinach, chopped
1 cup mushrooms, diced
1 tomato, diced
1 bell pepper (any color), seeded and diced
Salt & pepper to taste
4 teaspoons olive oil
Start by chopping all the veggies and ham, and shredding the cheese. Arrange the toppings (ham, cheese, vegetables) in small, individual bowls, so they are ready to add to the omelet. In a small bowl, beat 2 eggs with 1 teaspoon of milk, and a pinch of salt and pepper until the yolks and whites are thoroughly combined.
Heat 1 teaspoon of olive oil in a nonstick skillet over medium heat. Add the beaten egg mixture to the skillet, making sure the egg spreads out in one even layer across the pan. Sprinkle ¼ of the meat, cheese, and veggies onto the omelet. Let the omelet cook for 2-3 minutes or until the edges are cooked and the center is slightly set. Fold the omelet in half and cook for another minute or until cooked through. Sprinkle cheese on top, if desired, and serve immediately.
Using the steps above, continue with the remaining ingredients to make 3 more omelets. Enjoy!
Note: Sauté veggies ahead of time for a softer consistency.
I'm so excited to share my interview with fellow preemie parent Jamie C. Johnson with you on her book launch day! You can find her book Strong Faith: Daily Encouragement for Moms and Families of Premature Babies on Amazon.
"As a result of my NICU experience I have become an advocate. I am on a mission to learn about preemie statistics, resources, etc., more specifically around families of color."
~ Jamie C. Johnson
Please share your NICU journey.
I gave birth to my son Caleb on September 28, 2018 via emergency c-section. He was delivered at 32 weeks, weighing 4lbs 0.4oz. He stayed in the NICU for 49 days. Caleb is my first child. I dealt with a rollercoaster of emotions as I had no one to talk to about the preemie/NICU experience. Caleb had his ups and downs with weight, his heart rate & his breathing. It was hard to find a way to feed him and he not have an alarm. I had a difficult time producing milk which was a major blow to my esteem as a mother. I felt pressure and guilt from the nurses as they kept asking about when I was bringing milk or when I did give milk "oh, is that all?" Having to resort to formula was painful. We are vegetarians and we planned to keep things as natural/organic as possible.
Caleb had reflux and would vomit during many feedings. We tried several bottles & nipples. One of the nurses that I absolutely loved shared how some babies responded positively to "thickened feeds" (adding oatmeal to milk). I asked repeatedly to try it and my request was denied. I followed the NICU team's suggestions but I knew it wasn't working. When I told a nurse that it didn't work because Caleb was having bad alarms with me (which he rarely had) I was told that the head of the unit needed to see it not working for herself- which meant more alarms. I felt like they actually wanted him to have alarms. I was so angry that I wasn't respected as a mother. It took having a meeting with the head of the unit for my request to add oatmeal to Caleb's formula to be approved. Once we started it the alarms stopped and he began to gain weight more consistently.
The unresolved feeding issue was what kept Caleb from coming home. He passed all of his tests that were necessary for him to be released. He just needed 3 consecutive days of no alarms. To think that not being listened to as a parent not only delayed my son from coming home but also contributed to the many times his heart rate dropped and his breathing slowed is heart breaking.
What gave you strength while going through the NICU experience?
God was my main source! I prayed so much throughout our NICU journey-believing that Caleb would come home and not have to stay until his original due date. Joshua, my husband was such a rock. He was working the night shift at that time and sacrificed his sleep to ensure I could get to the hospital everyday (I was medically not allowed to drive most of the time as I healed from my c-section). My family & friends were great as well. They held me accountable when needed and even allowed me and supported me during my low days. My mom only missed 1 day at the hospital with me.
I found a song that ministered to me and kept me encouraged. I played it in Caleb's room everyday. I also found a book about an amazing boy named Caleb and read that to my Caleb everyday. I am grateful for technology! Being able to FT family and friends made quiet/lonely times conquerable.
Tell us about your organization, Build You Up Sisters.
Build You Up Sisters was created to provide opportunities for mothers of all walks of life from around the world to connect and support one another through love and sisterhood. We believe in the power of shared experiences to: foster Trust; give Encouragement; develop Relationships; and provide Support. The need for the sisterhood was noticed when our founder, Jamie Johnson became a mother to her amazing son who was born prematurely and was hospitalized for over 40 days. The many experiences she had led her to wonder about those that may not be as fortunate to have the support she did and the desire to connect and support mothers like her. BYU Sisters will soon have a cohort program to help moms become mompreneurs so that they can be financial contributors to their family while being active in their children's lives/education.
What inspired your new book?
While in the NICU I tried to find a book to help me through the process. I couldn't find anything that I could connect to. One day while spending time with Caleb I heard that I would write the book that I was looking for. From then I began writing out our experience and what I did to make it through as a mom of a premature baby.
I’ve also learned that strength is not dependent on one’s size. The toughest person I’ve ever known fit in the palm of my hand.
~Kristina Mulligan, One in a Mulligan
Being a preemie parent does not end when the NICU doors swing closed behind you after discharge. Being a preemie parent doesn’t stop when your child’s due date passes, nor when they turn two and adjusted age is no longer relevant. Parenting a preemie is for the long-term and, in so many ways, the journey never ends.
Prior to becoming a parent, and even long before my struggle with infertility, I had so many notions about what I would be like as a mother. My dream of motherhood began when I received my first doll and I felt that I always just knew what my parenting style would be. I thought that I was so aware of the type of person that I was and would become, and then my son was born at 28 weeks. What is so fascinating about people is that two individuals could share an experience and, while no situation is identical and neither are the persons involved, it will shape them in completely different ways.
Prematurity is something that can only be completely understood by those who experience it firsthand. I’ve felt the gaping hole in my heart each time I left the hospital without my child. I’ve grieved losses, even though our family was one of the lucky ones. I’ve wept over grams gained and lost, and milliliters of painstakingly pumped breastmilk spilled. I was jolted from a life of comfort into one that was so uncertain and traumatic, yet I survived. And I’ve had to quickly turn from quiet and timid to an advocate for someone who doesn’t have a voice.
Just as giving birth to and caring for a preemie is a rollercoaster, so is the evolution of the preemie parent. There are ebbs and flows from the time the baby is born, to discharge, to their first birthday, and beyond. The shift from survival mode to every day life was the most difficult, and I’m still working past the traumas almost three years later, but through this transition I’ve become wiser.
My strength has been pushed, pulled, twisted, and put through the elements, but I made it through. I’m braver than I ever thought I could be.
I’ve also learned that strength is not dependent on one’s size. The toughest person I’ve ever known fit in the palm of my hand.
I’ve lost relationships as I learned the influence of those close to me on my personal mental health and, in turn, the wellbeing of my family.
I have a new respect for my body and what I put on it, in it, and around my home.
I’ve discovered that all messes can be cleaned up, and that life is more fun with a little chaos involved.
I’ve learned that every cause, no matter how small, is worth fighting for. And I found mine.
With small beginnings comes appreciation for what the typical parent believes are little things – each gram gained, every single breath taken, even every dirty diaper. After all that we’ve been through as a family, it’s easy to only focus on the negative, but over time I’ve learned to look at our experience as a gift, not as a punishment. Parenting a preemie alters you forever and I’m far from the mother that I thought I would be, but I choose to believe I’ve been changed for the better. I’ve changed into who I needed to become.
"When I discovered the need, it became my passion. I began to research and design a line of preemie clothing that would genuinely address their unique requirements and sizing."
~Cressie Baerg, Preemie Store
As I sit and write this article for our guest blog post for Ali the founder of Me Two Books, I am struck with the realization that I have been making preemie clothing longer than some of the mother’s that might be reading this blog post have been alive! Some would feel it is time to retire, but when you are doing something you love, why quit?! The question then is asked, "How did you get started making preemie clothing?" "Did you have a preemie?” No, I didn’t have a preemie. Actually, someone I knew in the church I was attending, had a preemie baby, and nobody was able to find any suitable or affordable clothing for it. I told them, "I can make preemie clothes!" You see, I had sewn all my life, from my own clothes to clothing for my 3 children. When I discovered the need, it became my passion. I began to research and design a line of preemie clothing that would genuinely address their unique requirements and sizing.
Of course, I don't personally sew everything we manufacture today! We've far outgrown what I can produce alone. We have a team of great people that manufacture our preemie clothes right here in the USA. We offer our Perfectly Preemie line in 3 sizes - starting at just 1-2.5 pounds. We make many of our items to be as NICU-Friendly as possible, with open shoulders, quick velcro closures providing easy dressing. We also offer fun dresses and playsuits plus we are hoping to add some great outerwear options this next winter, as well as some more fun ideas.
Last fall we acquired the Preemie Store and now have combined our great Perfectly Preemie line to the over 36+ brands carried on the Preemie Store. We want parents to be able to find anything they might need for their little miracles in one place.
Things have changed in so many ways over the 26+ years we have been working with preemie families. The biggest advance has been the internet and the ability to have an online store that is open to parents 24/7. This has been very nice for preemie parents who spend most of their time in the NICU not allowing them time shop at a physical store from 9-5. Most brick and mortar stores carry very little preemie clothing anyway, because preemies are still a small percentage of all live births.
I also now have the privilege of working alongside my daughter, Melissa who was in elementary school when I started. She takes care of all the order fulfillment, customer service, and so much more. It is a real joy to know the stores are in such good hands with someone who has been with me along this beautiful journey as long as I have. She is planning to take over whenever I am ready to retire, the problem is I have no intent at this time! You see I just love what I do. Along with Melissa, my wonderful husband Kevin helps out with all the bookkeeping, and marketing strategy.
We are a small business with a great big heart for preemie families. The best part is hearing back from parents and families with pictures and stories of how having such cute, and easy to use preemie clothing has made a difficult situation so much better!
Check out all the great things offered at Preemie Store today, www.preemiestore.com.