Adler's Story
The story behind the line & how we got started
4 weeks after my daughter Adler Grace was born, she developed a bad rash on her face. This was in addition to several other gastrointestinal symptoms that we were battling since the day she was born. At the time, she was already being treated for severe reflux. Every feed became a huge task to get her to eat. Her appetite dropped and reflex eating was no longer on our side as she grew older. After months of being in constant pain feed after feed and Nutramigen not doing the trick, Adler was put on a prescription formula as treatment to a cow's milk protein allergy. The feeds were night and day, and we saw instant results within days. Many of her gastrointestinal pains went away; however, the battle to get her to eat stuck around. It stuck around for months. Adler developed a feeding aversion to her bottles at only 2 months of age by associating pain with eating. Every feed was a struggle, and the only way I could get her to successfully eat was by dream feeding, which I stumbled upon. The refusals were long and hard. She would show signs of hunger but would reject the bottle. Refusals were so intense that she would cry herself to sleep. The moment she would fall asleep, I would switch out her pacifier with the bottle and this is how I would get her to consume any amount of volume. (Dream feeding definition-
“Dream feeding is exactly as it sounds. You feed your baby while they’re semi-awake, or in a dreamy state.”) Dream feeding led me to the idea of creating pajamas to raise awareness because I was up all hours of the night trying to get ahead on her intake for the day.
As Adler grew older, refusals got harder and the battle was never ending. It became so intense that the sight of the bottle, as well as sitting on the rocker where she fed or holding her in the feeding position, would cause her to scream. Something was not normal. I kept telling her doctors about her behavior but NO ONE understood. No one wanted to attempt to feed her because of the reaction she had to the bottle. Adler’s growth and nutrition depended on her eating through dream feeding. Mama bearing her doctors led us to a list of possible causes through testing and consults with both occupational therapy and speech pathology (SLP.) As a mom, there is nothing worse than watching your child cry and feeling so helpless. I researched all night long and made many changes in our feeding approaches, including switching bottles 3 different times to create new experiences for her. We placed her in different seats, tried distracting, tried stimulating with hot/cold, added flavor, did the pacifier swap trick and so much more. She would not eat willingly. Nothing worked. Dream feeding was the only way I could get her to take ANYTHING, until that didn’t work. Every feed was a task to get her to eat anything. She would show hunger cues but wouldn’t accept. It was mentally exhausting and a struggle. Babies take up to 8 bottles a day, and both she and I cried at almost every offer. For months, it felt like we would never see the day where she would want a bottle. I would soothe her in anyway I knew how and cry with her. One way I found that I could get her to calm down in the middle of a refusal to was by singing” The Five Little Speckled Frogs.” I’ll never forget the first time I caught on to this catching her attention. We were in the playroom, doing our normal drill of things to do and not so while offering and she was refusing. She was crying hard while nursery rhymes played on Alexa, and I was singing along with most songs, simply trying to calm her down. As I sang “Five Little Speckled Frogs,” she looked up to me and stopped crying. She watched my face as I sang the entire song and then fell asleep. From then on, “The Five Little Speckled Frogs” was my go to move to calm her down. That one discovery made life seem a little bit brighter. It became our saving grace during long days, and it could change her mood almost instantaneously.
Luckily, through dream feeding, I was able to keep her doing well on her growth charts and thriving because she wasn’t doing any of the work. She was not willing to eat and didn’t want anything to do with it. Had I not stumbled upon this way to feed her, I fear she would have ended up on a G-tube, and I knew that feeding would only get harder as she got older and took fewer naps throughout the day. During all of this, a new friend from Texas who lived through a very similar situation suggested reading, “Your Baby's Bottle Aversion” by Rowena Bennett. At the time, we were already under the care of an incredible speech language pathologist. Ironically, they shared the same name. I joked with each of them that Lauren was my new favorite name. They were both heaven sent to me. The book was absolutely life changing and once “A, B, and C” didn’t work with our SLP, we followed the program in the book with both Laurens by our side. This book was eye opening, and it felt as though someone had been spying on us or I wrote it myself. I was not alone. For so long, it felt like I was fighting this battle with no one by my side. It felt like I was the expert even to the doctors. Even the medical professionals weren’t sure how to help. There aren’t many feeding specialists out there for infants with aversions. People looked at me like I was crazy. It felt like people either didn’t take me seriously when I would say she refused or didn’t like to eat or they thought I was being dramatic. I felt so alone and didn’t know what else to do, but life revolves around eating. However, she looked healthy and had rolls…how could she not like the bottle? It was mind blowing. How does she look so healthy but only average 15 ounces a day or on low days be at 10 ounces? The aversion was and is a mental game, and I didn’t learn that until reading Rowena’s book. I learned from this book that though this started out as an association to the pain and fear of eating, there were things I was doing or being instructed to do from medical professionals that were not helping our outcome. Things that, to Adler, only made things worse. They were things I did out of love and concern to get her to eat that only added to her condition, like dream feeding! Dream feeding, which I successfully kept her doing well on her charts with, was actually hurting her. By only eating as she slept or letting her guard down when she was in a drowsy state, she wasn’t making the connection taking the bottle no longer hurt and would relieve her hunger pangs. She would simply fall asleep and wake up feeling better but not know why or how. Through this program, you are instructed to follow a list of golden rules once eliminating other circumstances of physical issues or things that could be causing issues.Dream feeding during the day was eliminated to allow her to make the connection on her own and see that it was okay to eat. This was hard. The first few days were horrible. Another huge rule was absolutely trusting your baby and not pressuring them. Any negative feelings towards feedings or bottles would only prolong the refusals. My SLP told me that as long as it took to create the aversion could be as long as it takes before we see a turnaround. We had to learn to read her cues and allow her to make every decision of when and how much she eats. No schedule, no routines, she was in full control. Dream feeding was allowed if the minimum volume wasn’t already obtained. Adler liked to live on the edge for an additional two months. Rowena says your baby can be aversion free in two weeks and volumes may increase. I’ve learned to trust Adler and am able to read her better because of the book, but we didn’t see the full turn around in two weeks. Behaviors improved, but she still rejected feeds from others. I’ve also never been able to ignore the suggestion to stop tracking intake from the book because her daily intake never really increased like they said it would. Adler’s daily intake was half or less of what the recommended amount was. RECOMMENDED, it’s not a goal. Trust your baby and allow them to self regulate, clearly she knows what she needs. Look at her. But that doesn’t mean my stomach isn’t in knots knowing she’s only had 12 ounces. It’s hard and I hated the feeling. Her bad days were my bad days. They know what their little bodies need, and it’s okay to have high and low days, even if she has only 10 or 12 ounces in 24 hours like my girl did day after day. Or like her lowest day ever of only consuming 4.5 ounces total.
I am here to share my experience with you in hopes that by raising awareness through personalized PJS, I will prevent another family from having to live through this literal hell on earth because that’s what it felt like for me for a while. I loved every second of caring for her, but the days were long and hard. Constant battles, always crying, feeling helpless and inadequate all the time. How could I not feed my baby? Our lives revolved around Adler’s eating, and it still does but with much less intensity. We couldn’t leave and go for a while. If she refused and she was hungry, then she was cranky until she finally gave in. Eventually, she got to where she started ignoring her hunger cues and wouldn’t even act hungry. Offering before she may be hungry could be seen as harassment in her eyes. She would do 8-10 hour stretches frequently and her record is a 16.5 hour stretch. No one besides me was able to get her to eat for almost the entirety of her life. My husband has recently started offering and she allows him to feed her for the most part. Her schedule is unpredictable, and we never know what the day will be like. My older two children are the sweetest with her. They want nothing more than to give her a bottle, and they’ve only been able to do so one or two times in the first few weeks of her life. For every feeding we all walk on eggshells around her because every bottle that she is willing to take is a step in the right direction. My kids know to be quite and to not cause any distractions. When she’s done, she’s done. She won’t take anymore, and if you keep offering, she may see that as pressuring. Anything she takes willingly is cause for a celebration because it wasn’t always that way. Some feeds she will take .5-2 and we learned to accept that. After every bottle, my older two automatically ask how many ounces eagerly. They don’t even know what ounces are. I’ve learned to not obsess and stress over how many ounces now, even though I still track. Tracking is a nice reminder of how far we’ve come as well as her growth chart on our fridge. It’s now become more about the behavior. She’s in charge and she determines what and when she wants it. What a smart little girl she is. Watch out world, we have a future CEO on our hands. Because of the improvements on the behaviors towards the bottles, I no longer have a bad day if she ends her day at only 12 ounces as long as she took all bottles willingly with ease and ended them happy. I used to dread each bottle, and it feels like a huge weight has been lifted off of me. We’re stumbling into the solids world. She’s still orally defensive and did not take to purées at 6 months. She showed very little interest in eating it or bringing anything to her mouth. We then entered into the world of baby-led feeding where again, there is no pressure and it’s all on her. You offer and she does with it what she will. Some days it’s pure exploration and others she may take a taste. She’s now 7 months old as I am writing this, and in the last 3 months since I read and implemented Rowena’s golden rules, we’ve seen so much progress. Though they may be baby steps, they’re steps forward and in the right direction. I’ll forever be grateful for having a school and school system that allowed me to be with her during this time. It was my hope to be able to return to teaching once she was where she needed to be. I exhausted all of my time available for me and it led me to have no choice but to leave a teaching job I loved. It was fair for my students and I was still Adler’s lifeline. I was a talented art teacher and had finally landed my dream job at my former high school for 3 short and unpredictable years... (Covid, hybrid schedule and platooning with Hurricane Ida.) God works in mysterious ways, and for some reason he wanted my girl and I to live through this. It’s a season. A season that was chosen for us and a season that I have never heard of. No one I knew ever had a baby refuse to eat. I’ve heard of children having feeding disorders or aversions in combination with a physical disability or complications. It was not until Adler came along that my family and I learned what this was truly all about. You have no idea until you witness or live it firsthand. That can be said with many things in life. I’ve made friends both nationally and internationally through this experience and if it weren’t for them, I’m not sure how else I would have made it. They were there when my husband didn’t quite get it. They were there when my mom gut kicked in. Moms know best, and I was her best advocate. There are a number of support groups through social media. I was very open with this experience along the way because I believe in the power of prayer. If you don’t share your story, how could people learn or prevent it? I’ve had several people reach out to me because of my openness by lending advice, support and prayers. It’s a battle that left me feeling completely alone because it’s not very common. It’s a battle that makes you feel crazy because your baby is physically healthy otherwise. It’s a battle where you have to just smile and shake your head to comments because they are oblivious to our daily life, and she is and looks healthy as can be. They’re oblivious of the cries, the refusals, the depression and the fear. They make comments that are harmless to most but daggers to my heart because they didn’t know she refused every feed that day. Most people think a baby will eat when they’re hungry. Though this may be true for most, it is not for a baby with an aversion. She would have allowed herself to starve if she were awake to refuse all feeds. It was gut wrenching to watch my niece who is exactly one week old WANT the bottle and eat like clockwork when Adler was always completely unpredictable. The refusals, the schedule. We had no routine and no idea when she would want or accept a feed. This experience took every ounce of energy I had. My sweet girl tagged along to anything and everything I had to attend. She became my little “tick” as my husband called her. She came to my eye doctor appointments, my annual gynecologist appointment, my hair appointments, and even my aunt’s funeral. Her progress was slow and by being her only caregiver who could get her to successfully eat, I had no choice but to resign. She and I will forever have a special bond from this, and God and I would have it no other way. I was in this battle alone with her until I found Rowena’s book. There were nights where I cried myself to sleep or cried in the shower. Although my husband witnessed it to the fullest, he didn’t quite live it the same as me around the clock 24/7. My life took on a new meaning. It was like we were in the survival mode of the newborn stage for 5 months. It was me and only me. My mind never stopped researching and advocating for her. I turned to a daily rosary and took Adler to a healing mass when I didn’t know what else to do. As the slap in the face that I would have to leave the job I worked so hard for kicked in, I started to fear for my health. The pressure from the stress became difficult to deal with. I was having heart palpitations, snapping at my kids when she would have a bad day, physically and mentally exhausted, stress eating and failed a depression test at my doctor’s office. The pressure was becoming unbearable. What if I cause myself to have a heart attack and then no one is able to feed her and all of my family needs me? The pressure was insane because again, I was her lifeline. What if I get sick, what if I get in a car wreck? My doctor suggested therapy and seeing a psychiatrist. It was that realization that I needed to turn back to my art. Art was my life before and had always been my passion. After 6 months of not having time or energy for myself, I picked up a pencil and brush. My passion became my therapy and I started feeling like myself again. That is when this idea was born. Using my art to raise awareness and tell stories.
Now I am here with an 11-month-old update, and she still doesn't consume much of solids. In the last month we have made progress and are starting to become willing to taste different things, and she opens her mouth for bites. In the last month, she had a triple scope to rule out any issues internally and all results came back great and normal. Amen! We also learned that she no longer has a dairy allergy and that too is a huge win. Meal prep is much easier, and I can now offer her what we are eating. She had her lowest of intake days this past month with a whopping 4.5 ounces total one day will she wasn't feeling good. She lost 2 pounds last month because her solid intake isn't there and with her increased energy, her bottle intake never increased. Through her therapy, we have changed many of things to try to make a difference. I am always trying new spoons, new tricks and researching. Baby steps for us will go a long way. Any bite is a step in the right direction. Adler will still have random low intake days and very long stretches.16.5 hours is her longest stretch between bottles. She continues to puzzle us, but just recently she gave me hope that she will at least take a few bites of her birthday cake. For a while, it upset me to think that she would just stare at her smash cake. She is now more willing to taste, and I think she may surprise us for her birthday! We continue to offer solids from the spoon because she is not a spoon fan unless it is thin, broth-like consistency. We also continue to offer every meal and snacks throughout the day even though she loses interest quickly. It's a season and my girl will get there in her own time. Some days she may only "eat" one meal a day, and sometimes she surprises us and is interested at every offering. Maybe her stomach is so small from not eating that she gets full quickly? The near future is unknown, and it's getting harder as she gets older. She is more independent now, fights me, or even puts up her finger telling me no. She is the boss, and we follow all of her cues.
Updated- 9/6/24
Fast forward to turning a year old. It is time to wean off of the bottles. We do it and she once again dropped off her curve and stopped growing by 50%. She now only eats meats and loves CHIC FIL A. Seriously, our go to. By March we were put on Pediasure for nutrients and she didn't take to it right away. I began having to mix it very slowly with whole milk and had to work our way up to a 4 by 4 ratio of whole milk and Pediasure. She wouldn't take more Pediasure than that and it had to be JUST THE RIGHT TEMPERATURE. If not, she won't take it. Extremely sensitive to change and flavor. Come May and we meet back with the feeding team. She is placed on an appetite stimulant and for the first time in her life, she showed an appetite. She still wasn't interested in food, but the few things we knew she would eat, she began eating MORE. Food has always been a struggle. It is just not fun for her. She was diagnosed with ARFID, which is Avoidant Restrictive Food Intake Disorder. There were just under 10 different types of food total that she would accept. Now, here we are today and she still has her same list of safe foods for us, but she eats ENOUGH while on her medicine. We rotate her on and off the medicine so she doesn't build a tolerance. She will be 3 this coming January and she is still on 2-3 bottles a day for nutrient purposes, not calories. She just started school this week and to no big surprise, only ate her pepperonis on her first day and second day didn't eat at all. One day, maybe she will recover and learn to love food. For now, we continue to eat all the meat and chocolate around!
Storytime with NolaBee will be my way to make an impact using my God-given talent. Before Adler, NolaBee was just a side business of me simply chasing my dream by putting my art into the world on the side. A world that became home decor and NOLA inspired. It’s a world that I still love and will still have inspiration for from time to time, but I don’t feel the pull like I do for my private label of children’s pajamas. Through this line, I will raise awareness by providing care givers with the tools to empower their little ones. I am taking bedtime stories to a new level with conversation starting pajamas. These pajamas will be customized to a child’s story through its artwork and spark questions from those around them. Through this line, I hope to create an opportunity to have difficult discussions with children, put a face to a disease, and create an opportunity to educate and advocate for multiple diagnoses that have become a hard reality for many. These pajamas will allow children to relate by the connection of common interests through the fun prints and patterns hand painted from their stories. I hope to set up an opportunity for parents and guardians to take the next step in creating inclusive children by empowering our youth to be accepting of differences and show empathy. Many voices and stories deserve to be heard, and I hope that these pajamas will speak for themselves. I originally set out on this mission to share Adler’s story and simply hoped to prevent another family from having to face an aversion because it was something I never knew existed and many medical professionals weren’t familiar with it either. It then led to something bigger and turned into the aspiration to advocate for all and not only my children. If I can help one person, my line will be successful. So many times, medical professionals would shrug their shoulders and just tell me she will eat eventually. I am here to offer support. I am here to tell the stories, share books that help others get through tough times or that help better explain the situation, and share resources. Why pajamas? Because I was up all hours of the night dreamfeeding my baby girl. The pajamas will hold a message through hand painted designs from inspiration of the stories and voices of spotlighted patients. The patterns are printed on 95% bamboo and 5% spandex. They’re adorable, snug-fitting pajamas for your little one. The bamboo material is easy on the skin and keeps your baby’s body temperature regulated. Seriously, they’re the softest pajamas. They’re cool enough for the summer and snug enough for winter. This pajama line is timeless, fun and relatable for children around the world. The patterns are created to personalize each story and make diagnoses a little easier to talk about. Each pair of pajamas will receive a suggested reading list for your little one to help guide in conversations that correlate to the patient’s story in addition to a “Meet the patient” card to educate your child on the message of the set. Educating the youth of our world one pajama set at a time. With each purchase of a garment, a portion of the proceeds will be donated to the Children’s Hospital of New Orleans (CHNOLA.) If you’re a NolaBee customer already, you may know my family’s history and ties to this place. As a family member stated, CHNOLA is home, and I will always make it a point to repay our gratitude. When bought directly through NolaBee and not at one of our retail partners, additional resources will be provided in the unboxing process of your package.