Not Your Typical "Picky Eater": Our Unfiltered Journey with PFD, Struggles & Start of a Breakthrough
Our raw, messy, but real life eye-opening and in-depth look inside PFD (Pediatric Feeding Disorder) and Dysphagia
After debating for a while on whether or not to share this, I decided to go for it, hoping that if it helps even one person, then it was worth it. I also think it’s important to know that even behind the smiles, laughter, and happy pictures, there are struggles. There’s real life, but that’s how we connect to others and form deeper, more meaningful relationships. It’s our challenges and how we react to them that molds us into better, stronger, and more resilient and empathetic humans. Suffering produces perseverance; perseverance, character; and character, hope. (Romans 5:3-4) As much as we all post the happy highlights of our lives, sometimes hearing someone else's story and struggle is what we need to know that we can get through whatever we're going through. I am a firm believer that everyone has a unique story and that even in the struggle, there is beauty and lessons learned, if we’re willing to look for it. If you have the courage to share your story of how you’ve overcome what you’re going through now, it will become part of some else’s survival guide. Let’s continue to be vulnerable, show humility, build each other up, and love and support one another, and this crazy journey will be worth the ride.
May is PFD (Pediatric Feeding Disorder) Awareness month. This wasn’t on my radar or something I even knew about until months of struggle, more research than I ever thought possible, and an eventual diagnosis for Jack with GERD, PFD, Dysphagia, and Gastroparesis. PFD is not having a “picky eater.” It goes MUCH deeper than that and is FAR more complex. From Feeding Matters (also one of the best PFD resources with networking and support groups), “PFD is defined as impaired oral intake that is not age-appropriate, and is associated with medical, nutritional, feeding skill, and/or psychosocial dysfunction. For these infants and children, every bite of food can be painful, scary, or impossible, potentially impeding nutrition, development, growth, and overall well-being.”
To share our story over the last 1.5 years, I first have to say that it wouldn’t be possible to be where we are today without the continual love, support, and prayers from some of the best friends, neighbors, community, and family. From the thoughtful texts, “I’m praying for you and Jack. What can I do to help?” to the sweetfriends that brought over surprise dinners and pick-me-up packages to the friends that offered to come by during meal times to keep me sane while feeding, to our prayer warriors who have kept Jack on their mind for over a year, to my dear Mom who is arguably just as big of an advocate for Jack as we are and also led me to some amazing connections to get us where we are today. THANK YOU to each of you.
This story is long, VERY long, but in it is the real unfiltered “behind the scenes”. Behind the joyful smiles, behind the fun activities, behind the stoic, “It’s fine, I’m fine, everything is fine” face. It was our life. Jack’s struggle. Our struggle. Wrestling with Faith. Our family’s resilience. And finally a Breakthrough. It’s RAW. It’s MESSY. It’s our REAL life. I don’t expect many of you to actually read this, and that’s totally fine, but if you are going through your own struggles, this may be a source of comfort to know you’re not alone. On social media, we tend to only see everyone’s highlight reel, but this is a sneak peek into our messy “behind the scenes”. If you know of anyone else that has a child going through something similar, feel free to pass this along as finding others that actually “get it” and have lived it is therapeutic in itself, and it may be that next step to getting the help they need. As long as you promise to hold off on the judgment (you’ll know the part when you get there), we'd love to share our story with you.
JACK’S STORY: “OUR EXTREME CHALLENGE FEEDER”
Jack was born at the 57th percentile. By 9 months, he dropped to the 3rd percentile (considered “failure to thrive”). I have my own issues with this label as the first time you hear this it's terrifying, but that's another tangent for another day. Without understanding the full picture, many providers would say, “Maybe he’s just finding his growth curve,” or “Maybe he’s just a really REALLY picky eater,” but there is a reason we have a mama’s intuition that can’t be ignored. It’s also hard to paint an accurate picture of reality as many of the providers didn’t understand what all went on behind the scenes and how much work, creativity, energy, and distractions went into even keeping him at the 3rd percentile. The first few months I didn’t even have the words to explain the struggles, except to know we were barely surviving at best.
Some loving and well-meaning friends would try and help and say, “Don’t stress, he looks happy. Kids will eat when they’re hungry.” Correction, “MOST” kids will eat when they’re hungry. Not my kid. We tried that for a couple days, and the most he ate one day was about 5 puffs that he let disintegrate in his mouth over the course of a couple hours. If it was up to Jack, he would have had 3 bites of food the entire day and probably been in the .001%. Another common phrase we heard often as his weight kept plummeting at each growth check, “Once he starts eating more solid foods, he’ll gain weight,” but actually the opposite happened as he lost even more...
Jack was first diagnosed with GERD within the first few weeks of him being born. He also had a dairy intolerance so I went dairy-free for over a year as well since it was a necessity with nursing. He threw up 6-7x on average each time after he would eat or drink up until around 1 year of age with new custom compound medicines combined with self-regulating by eating way less than was normal. He didn’t sleep more than 2 hours in a row up until about 7.5 months. Our daughter had GERD, dairy intolerance, and wasn’t a stellar sleeper by any stretch of the imagination, but this was a whole new intensity.
Even before that though, I knew something wasn’t right as he never seemed to be interested in food and he definitely couldn’t figure out how to chew as the food would just sit in his mouth (called pocketing) before he would eventually spit it out. If I actually got him to eat a decent meal, many times he would throw up at some point in the day or night, and the throw up would have undigested food from 10-12 hours earlier. That was a major red flag to me as the stomach usually empties after 3-4 hours. After visits with over 8 specialists, numerous evaluations, tests (Upper GI, swallow study, EGD, multiple rounds of bloodwork, etc), bundles of medical paperwork, weeks of food diaries, more OT, Speech, and Feeding therapy appointments than I can count, trials with different specialty custom medicines, and LOADS of research, he finally got diagnosed with PFD and Dysphagia. Through his diagnosis, research, and therapy appointments I learned more about PFD and the chewing and swallowing process than I ever thought possible. For most kids, chewing comes natural at various milestones. I had no idea that over 50 pairs of muscles were involved in the chewing/swallowing stage and how much coordination had to happen before a piece of food enters your stomach. This comes second nature for most people, but your tongue actually has to move in circles, gather the food, and then form a bolus before the tongue pushes the food down to swallow. Enter all of the feeding therapies, research, exercises, etc. and keep in mind this is all for a baby and then toddler that can’t talk and who wants nothing to do with food, let alone trying to teach them what to do.
I can’t thank Cailin Silcox and Omaha Pediatric Therapy for all the help, encouragement, and support in this journey. I remember when we had our first thorough OT evaluation with Cailin and I asked her, “So how long does this take for kids to figure it out with therapy? Like a couple weeks, a month or two at most?” She looked at me with sympathetic eyes and a caring, calm voice and replied, “Dysphagia/PFD is not a sprint, it’s a marathon. Every kid has a different story and a different timeline.” Right there my eyes filled with tears, as I had that sinking feeling we were in this for the very long haul, and this journey was not going to be an easy one.
Even with the diagnosis of PFD and Dysphagia, we still needed to get to the root of why he hadn’t learned to chew, had 0 interest in food, wasn’t gaining weight, throwing up, and was having such difficulty. Jack had delayed oral motor function, poor coordination, sensory issues, and low muscle tone, but what was causing his extreme avoidance of food? He was our biggest puzzle yet, and no one seemed to have the answer.
A DAY IN THE LIFE OF FEEDING WITH PFD:
Oh meal times…. How I dreaded each one. I had a constant pit in my stomach for over a year and probably some PTSD that I’ll eventually need to work through. Stressful and anxiety provoking doesn’t even begin to explain it as I had to somehow keep a smile on my face and try and keep things light, new, and fresh, somehow getting in the required calories 3-5x a day that my baby needed in his prime growing years, while also feeding and attending to the needs and constant questions of my 2 (now 3 year old). I felt the weight of the world on my shoulders at each meal time as I felt like being constantly stuck in survival mode for 1.5 years, just trying to figure out ways to get calories in him so he would gain weight. As a Mom, you feel like it’s your responsibility to have your child well-loved and nourished, and when you’re doing everything you can but still not getting the results you need for your baby to be healthy, it feels like you’re failing, let alone heartbreaking to watch your child struggle or be in pain constantly.
Each actual feeding process took around 2-2.5 hours, followed by me chasing him around basically all day to get calories in him to try and keep him from losing more weight. My whole day revolved around feeding Jack. Career ambitions, any sort of social life, and activities for Everley took a backseat as there wasn’t enough time in the day to do much besides do our best to keep our kid out of the “failure to thrive” category. For many months, I was the only one that could get Jack to eat anything (though many people tried), so with that came overwhelming pressure and the feeling of being trapped and never getting a break, especially when I needed it most. Burn out came quickly, but my only option was to keep going. Every day I prayed that God would give me the strength, grace, patience, and endurance to keep pushing through. Eventually Jack started eating from my husband which was a huge answered prayer and what I desperately needed. I would eagerly look forward to any dinner meal my husband could be home to give me a little break.
Before each meal, I followed all the Therapy recommendations. The first step was to wake up his sensory system 30 minutes before the meal by having him move his body like swinging, pushing heavy objects around, walking up and down stairs, jumping on pillows or the trampoline, etc. to stimulate his mind and body connection. I’d then have him help me make the meal so he would be more interested and vested in his food. Then I’d give him ice water and use the various vibrating teething tools to wake up and activate his smaller mouth muscles (which I’d also do throughout the meal to wake muscles back up and keep his muscles engaged). Then I’d massage his cheeks and mouth muscles and practice some of the exercises from therapy. We’d use mirrors for him to watch him eat, verbalize each part of the chewing and eating process, demonstrate by overexaggerating our eating, tried about 8 different types of specialty spoons, etc. This is just a tiny, TINY snapshot, but I have a 10-page document of all the tips and tricks we did before, during, and after eating that I’d be happy to share with anyone else on this journey.
Trying to get Jack into the highchair was another fun challenge at every meal. Kicking, screaming, and throwing his body in every direction as I tried to get him to the high chair became an Olympic event. I did everything in my power to facilitate a calm, relaxing, stress-free environment, but nothing helped. I tried to come up with all sorts of fun experiences in the high chair (like playing with water, play-doh, painting, etc.) and also fed him in all sorts of novel and calming places (like outside) too, but nothing seemed to work. We had to work through his own fears and mental blocks with eating and figure out what was actually causing him pain and anxiety while balancing the fact that I still had to somehow get calories in him.
Each meal I’d make a few specialty foods for him (even at 18 months almost everything needed to be prepared and pureed a certain way, and even things like mashed potatoes were too hard for him to eat). At 18-20 months, he was still eating at a 6-7 month level. He had about 5 foods he would sometimes “tolerate” and I’d grind up each one with a special liquid to help it be more viscous to get him to swallow it. We’d offer 1-2 “safe” foods and then 1-2 new foods to start increasing his exposure and tolerance.
I’d pray every meal he wouldn’t get into another food jag (another term I’d never know before this journey – but basically when kids only eat a couple of items, that’s all they will eat, but then they get so burned out on it that they wouldn’t eat that food again for 1-2 months and possibly ever again) and lose one of the few foods he would eat. It was a constant balancing act of what I could find to actually get him to eat a few bites of, offering new foods (even if all he did was look at it or eventually touch it), trying to avoid food jags, and working through sensory issues he had as well. Each bite was tiny (the size of about 2 small peas), and we’d have to strategically place the food on the back corner of his mouth so he would start learning how to move his tongue over to form a bolus and increase muscle tone and coordination. This was especially tricky with a baby who didn’t want to open his mouth, let alone have a foreign object in there. He would maybe only take 1 small bite of his food, pocket it for 10 minutes, and then usually spit out. Many times he would just throw the food on the floor, wall, his sister (or me). J
Every meal I’d have to come up with a new creative bargaining approach to try to get him to eat (“I’ll do this super cool trick or let you play with this super fun thing if you take a bite of this!”) and usually this trick only lasted one meal (or even just a few bites), and I’d have to find something else for the next meal. Just a FEW of the many song and dances I did to bribe or “bargain with him” to get one bite in occasionally were blowing bubbles, playing with pop up toys, me playing the harmonica, having him play with play doh, having him play with the toaster or latte machine, feeding his mickey mouse figurines, me literally dancing or trying to juggle, or some other crazy thing, etc. Each trick only lasted a few bites and then I’d have to be on the search for something else, bigger and better. We tried to make meal times constantly fun and exciting with new utensils, Mickey mouse plates, Mickey and friends dinner guests, prize plates, popsicles to work on tongue strength and coordination, eating outside or at a kids table, etc. Using play kitchen utensils like tongs and eating food out of a muffin pan were big hits for a couple meals. The more novel the better. But as with anything, the novelty wore off and we’d be on the search for something else for the next day.
Most of the time even if I was able to bribe him to accept a bite of food, he’d pocket the food for 10 minutes or more, then usually spit it out. That is why the well-meaning advice from many therapists to “limit mealtimes to 30 minutes” just didn’t apply in our situation as he would have maybe gotten in a total of 20 calories in per meal time. Even though I usually only had him sit in the high chair for 30-45 minutes, I still had to continue mealtime in other creative ways to keep getting more calories in.
The cleanup was the icing to the cake. Yes I know, you expect to clean up a messy toddler and floor (minimum of a 4-foot radius), as this comes with the territory. When it comes to a toddler that never eats though, and feeding times being 2 hours with maybe 5 bites of food in his belly to show for it, the massive cleanup with food all over the walls, floor, clothes, you name it, (plus all the special parts in the blenders and grinders) would sometimes just send me over the edge as it would be a reminder of how much food did not get into my son’s belly, how much I felt like I was failing my son, listening to the lies in my head that my son would never learn how to chew and never grow and gain weight, and knowing the daunting feeding tube was just around the corner. Then wrapping my head around how I would get enough calories in him to make up for the lack he received at meal time. Jack was clearly trying to tell me something with his absolute defiance to mealtimes, but he didn’t have the words, and no one seemed to be able to pinpoint the reason behind it.
Following the actual mealtime, I then would have to chase him around the house most of the day trying to sneak a bite of food in his cheek while he was distracted and hope that it would dissolve so he would get some calories in and not lose more weight. Most of the time I’d find food he’d spit out all over the house in every nook and cranny. I resorted to making him super high calorie smoothies every day with 12 ingredients to get in a variety of nutrients in him along with high calorie oils and foods like MCT oil, peanut butter, flax, avocado, protein powder, formula powder, etc. He rarely would eat baby food pouches so the smoothies were the only way to get a guaranteed 300 calories in. After chasing him around, I’d then realize it was already time to start thinking about the next meal and what new creative ways and foods I could get my child to eat, my anxiety would skyrocket again, paralyzing discouragement would take over, and the cycle would continue.
ADDITIONAL PFD CHALLENGES:
One of the biggest challenges with PFD is not having answers. Countless specialist appointments, numerous evals, pages upon pages of paperwork, watching our child be put through tests that he didn't understand (let alone cringeworthy to watch as our baby would look at us desperately and though he couldn't talk, I could feel him saying, "Save me, get me out of here!!!!"), repeating the story hundreds of times and feeling like a crazy person, only to seem like it's falling on deaf ears. We felt like we were treading water in circles and going no where, barely surviving, but hoping eventually we'd have a reason so we could then make a plan and finally move forward. So many of these tests only proved what we already knew though, and we were in the same place as when we started.
Another challenge is the well meaning, but not-so-helpful advice from a few therapists. One of my favorites… Almost every feeding therapist would say, “Try not to stress…” but this seemed like an impossible task when his growth and development rested on my shoulders. Every day I tried “not to stress” but when your son isn’t gaining weight and keeps dropping growth curves, there’s no way not to feel stress. Another favorite, “They feed off of your stress. They can sense if your stressed out.” No kidding! EVERY mealtime I did my absolute best to put on a happy face and stay calm and collected. I said constant prayers relying on God moment by moment for patience, creativity, and endurance. It got to the point where even our 3 year old daughter would pray for Jack, and she still prays almost every meal, “Dear God, please help Jack to chew and swallow his food and not spit it out. Please help him to gain weight.” Without a faith and God’s help along the way, I probably would have lost my mind (more than I already did!) ;)
With PFD, you already feel hopeless so many days as baby steps happen S-L-O-W-L-Y and sometimes it feels like you’ve been in the same place for months, and many times that is true. I remember taking Jack to feeding therapy 2-3x a week at different places when I felt like we weren’t making any progress. Therapists would give conflicting advice, making my head spin, not knowing what was best. The worst was when one therapist told me, “Well I can’t get him to eat anything, and if he won’t eat anything with me, then I can’t work with him to make chewing progress….” Ok, cool. So I’ve been paying you this whole time and busting my buns to get here with all the different foods for you to tell me that you as a therapist can’t help him? Where do I go from here? Who can help Jack then?!? I felt completely hopeless. We actually started the process of getting him enrolled in an intensive feeding program where I’d have to fly out with him for 8 weeks and then they’d work with him for 8 hours a day. The problem was these programs had a waiting list, and the soonest we could get in was 8-12 months out. We still filled out all the necessary 12+ page paperwork plus detailed daily food journals (Ex. Breakfast for 2 hours: 4 bites of scrambled eggs, 1 bite of pureed peach, 1 bite of cottage cheese – pocketed for 13 minutes before spitting out, 1.5 bites of a puff that eventually dissolved after 5 minutes, sweet potatoes on the floor, back to our trusted smoothie for calories…)
One of the toughest challenges and biggest frustrations with PFD is that progress is not linear with PFD children. Every day is completely different, every week is completely different. We had days (and even 4 separate occasions), where we thought we were finally out of the storm as he actually was showing beginning signs of chewing and trying all sorts of new foods. Last year on vacation he even had a whole week where he ate the best he ever ate. Each time we would get our hopes up, praise God, and then bam, the next day or week, it felt like he took 10 steps back, not wanting to eat anything again, all without any answers or reasons. Everything we were doing was the same. It’s enough to drive you as close to crazy as possible. You feel like you’re finally making progress and everything is going in the right direction, and then for no reason at all, everything turns upside down. The only way I can even begin to explain his limited days of eating well were maybe that his body and brain were so desperate to go through a growth spurt or development stage that something kicked in to motivate him enough to get some food in him for a couple days before he was satisfied to go back to the status quo. That’s just a guess as I honestly have no idea or explanation.
Each time was heartbreaking and full of discouragement. He would have these “regressions” for a month or two before we would see any baby steps forward again. Embracing each day as a unique adventure was the only way to get through and realizing that progress isn’t linear. Our daily mantra: “Today may be 1 step forward but tomorrow may be 10 steps back. Take each day as it comes. Celebrate the small wins while remaining cautiously optimistic and being ok if that same small win doesn’t happen again for months.” We learned that this was the best realistic attitude to have to avoid constant disappointment and more frustration.
We also worked and continue to work with Jack through major sensory issues as well. Most kids need to be introduced to new foods 1-10x before they accept it. With Jack, we had to introduce new foods usually around 25x before he would actually be willing to let us put a little in his mouth. Around 21 months, we found out he loves the color green and would almost always try anything green (even if he would spit it out after, but at least he was open to it). That’s how we found out he was obsessed with green olives (still one of the few foods he will willingly eat to this day!) Green olives, canned green beans, soft broccoli, and smashed avocado are a few foods he’ll usually eat a few bites of now (after he learned how to chew) without a struggle. He now also prefers salty food like potato chips, and smoked salmon and powerful flavors like ahi tuna and sauerkraut. After much trial and error and observation, we realized he craves high flavor profile foods so that he can track the food in his mouth and know where it is. This also explains why he would never eat bland foods like bread, potatoes, or pasta. He would lose track of it in his mouth, freak out, and spit it out. He also was the same way with any ground meats or anything that would break into pieces in his mouth. We found adding lots of butter, salt, liquids, and certain sauces to foods did help slightly, but he still had to overcome the barriers of figuring out how to actually chew.
So many times I would hear friends talking about how their kids were picky eaters and would only eat kid foods like Mac and cheese, chicken nuggets, PB&J, cereal, and pizza. As much I tried to be a good friend and listen, at the same time I’d be holding back my tears as my mind kept going to the fact that I would give ANYTHINGfor my son to JUST EAT! Let alone, I’d be thrilled if he actually wanted to eat any of those kid foods. It didn’t help with the fact that our firstborn daughter can be a garbage disposal as she will eat anything you put in front of her. We did the exact same things feeding Jack as we did with her, but had completely opposite results.
At every appointment, the providers would say, “You’re doing a great job, you’re so well researched, you’re already doing everything that we’d recommend,” but I wanted answers and also didn’t know how much more I could take. Every appointment I’d try my best to hold back the tears in my eyes, but usually they just came flowing as all the stress seemed to rupture like a dam that just burst. They’d look at me with sympathetic eyes and reassure me that I was a great mom and there wasn’t anything else I could do, but it felt like I was still failing my son as I couldn’t figure out how to move past this. The option of a feeding tube would get brought up as well, and every time I’d leave feeling defeated and helpless. In hindsight, the feeding tube probably would have relieved much stress, but since Jack was at least staying at the 3rd percentile they said we could keep going and if he dropped below, then we could look into more options. This also added immense pressure on myself to keep him maintaining at the 3rd percentile. We did find a dairy-free high calorie formula (Kate Farms Pediatric Peptide) that they actually use in feeding tubes and that seemed to start turning things around in the weight department. Even though it was about $15 per 8.5oz, it was worth EVERY penny as it helped him to actually gain some weight finally. I’m so thankful for the Kids Eat Program who suggested it. We also gave him small amounts of MCT oil and loaded up everything he ate with loads of butter, and eventually he started gaining weight and even got him to the double digits percentile (yes, DOUBLE DIGITS!), thank God.
Another challenge that gets overlooked is the constant juggling act of having other kids, responsibilities, and family to care for while enduring the PFD struggles. Mom guilt takes on a whole new level. I constantly doubted my ability to make sure my kids were living full lives as so much time was consumed focused on research, appointments, food prep, cooking, feeding, massive clean up from Jack spitting food out all over the house, and repeat which took up most of the day. I was so burned out on therapy appointments (that didn’t seem to be going anywhere) that adding one more thing to the plate (even something fun like dance class for my daughter) was too much for me to wrap my head around. I felt like I couldn’t give her the experiences that I always dreamed of giving her. In hindsight, I know that my kids felt well loved, she’s only 3 and there’s plenty of time for activities, and we still made time every day for constant fun and learning opportunities, but when you’re in the trenches, you can’t see more than the fog in front of you. The doubts and discouragement have a mind of their own. I also felt bad that I wasn't giving Everley as much attention and 1:1 time. Looking back though, I can see how this journey has taught her compassion at an early age and a love so deep for her brother and others. Hearing her try to teach her brother how to chew by imitating me with my coaching and clapping and cheering wildly when he took a bite were some of the memories I'll always hold dear in my heart. I also decided to get some extra help for a few hours every week so I could take Jack to all his appointments and also focus on feeding Jack with another set of hands and extra love for Everley to make sure she was not feeling pushed to the sidelines throughout the roller coaster ride.
One final challenge. No one is a fan when kids get sick, but it's part of life so you do what you need to do and move on. When you have a child with PFD though, you dread each time you child gets sick. So many times we'd be making progress and even gaining weight, and I'd finally feel a glimmer of hope, and then one episode of a bad virus and we'd be spiraling back to his weight from 2 months ago. Whenever Jack would get sick, it was like his PFD symptoms were amplified, and feeding was even more of a challenge, if that was even possible. I can't even paint an accurate picture of this besides just telling you I don't wish those times on anyone. All the hard work and long days of getting him calories, gaining weight and making baby steps with chewing just went down the drain. Each time felt like a major setback, and the discouragement at times just made me want to give up trying. Even after he'd get better, it was like he forgot any progress he had made and we were back at ground 0. For awhile we even limited our exposure to people to avoid more weight loss episodes and huge steps backward in progress, but the sickness was inevitable as we also have a petri dish preschooler that brought home every sickness possible.
WRESTLING WITH FAITH:
Lastly, my struggle with faith was one of the biggest challenges I faced. Before I get into that as it’s messy and hard to write, I wanted share this quick story.
During different struggles in life, I’ve always had one song that somehow sticks out like it’s my theme song for the struggle. This time it was “Weary Traveler” by Jordan St. Cyr. I’m a big fan of KLOVE radio and 99.9% of the time I would get into the car (especially taking Jack to all of his appointments), this song would come on. I can only remember 1 time in the car where I didn’t hear this song. Each time, tears would fill my eyes, and I’d text my husband, “yep, song’s on again.” It still gives me goosebumps thinking about the irony of how often I heard it and how it always came on at just the time I needed it. The whole song is beautiful, but here’s just a snapshot:
“Weary traveler, beat down from the storms that you have weathered. It’s like this road might go on forever, carry on. You keep on giving, every day this world just keeps on taking. Your tired heart is on the edge of breaking. Carry on. Weary traveler restless soul. You were never meant to walk this road alone. It will all be worth it, so just hold on. Weary traveler, you won’t be weary long.”
Back to my personal struggle with my faith, and this is where it gets a little dicey. This is hard to write and be vulnerable, but I feel it’s important to note as many times it’s not talked about or just brushed over lightly. Through it all if I’m being completely candid, there were times I felt God abandoned us. I was on my hands and knees many nights, begging God to heal our son, to get my son to eat, to have him gain weight and get above the “failure to thrive” percentile. I was angry so much of my time was consumed with feeding Jack, and I felt robbed of the time I wanted to spend with my 2 kids doing fun activities, reading, playing outside, planning outings, without the added stress of trying to cram all of that inbetween the 30-60 minute short time in-between his meals. I bartered, I begged, I questioned God’s goodness, I wrestled with my faith, I was angry with God, I had not so pleasant thoughts, and if I’m being 100% honest, there were times I wanted to give up on God. I thought, if he loves our children more than we do, how can he put our children through this? My thoughts went deeper than that, and I started questioning my faith more than I'd like to admit. My thoughts went to all the poor children and families that have suffered in this world. Even with the doubts and frustration, we kept praying daily, still holding out for any glimmer of a miracle. I had to constantly hold onto the truth that though this world is fallen, there is suffering, and life is unfair, God is still there, pointing us in the direction of a place where there will be no more tears, no more struggles, no more pain.
After coming to a point of harsh realization that I was making Jack's weight gain an idol in my life, I finally got to the point where I completely surrendered. I remember the night vividly as it was a definite “Come to Jesus” moment in the most obvious sense. On my hands and knees, crying out to God, with tears streaming down my face, I suddenly felt an indescribable sense of peace and freedom that I hadn’t felt since we started this journey. Right then and there, with God’s help, I decided I would change my perspective and focus on the small wins, search earnestly for and find the blessings in life (even if it was just not having a line at the grocery store, a sunny errand day instead of running errands with 2 toddlers in the pouring rain, Jack accepting a new food for the first time ever, Jack finally outgrowing 6-9 month pants (even if he was almost 2 and can still fit into 6 month shorts), or the fact that even though Jack threw up on the plane, he threw up before we got on the plane and then didn't throw up again until we were landing so we weren't covered in vomit the entire time - yay for the small wins!). I made it a priority to focus on all the ways God has answered prayers in the past and kept a gratitude journal with all of the blessings, no matter how small. I knew getting back into the Word on a daily basis and making God a priority again and letting him take control was paramount. I wish I could say the worry and anxiety went away, but I was reminded of the truth that regardless of the outcome, God would help carry my burdens. All I needed to do was draw close to him, trust, and rely on him in the process. He may not answer our prayers how we would prefer, but he will give us the strength and endurance to get through. A few of my go-to verses that kept me going were Isaiah 41:10, John 16:33, 2 Corinthians 5:7, and Isaiah 40:31.
God used (and continues to use) this experience for me to teach me patience to a level I never thought possible and to relinquish self-sufficiency by teaching me to rely on him, moment by moment. Through it all, I knew God was also breaking me of my false sense of control and earthly concerns. I knew my focus needed to change from the problem to God’s presence and his promises. God allowed us to walk through some major challenging times, but he never left our side. He was right there with us, often through our friends and family, holding our hands, listening, letting us be real and cry it out, praying for us, and encouraging us, sometimes daily through it all. There is still beauty in the struggle. Beauty in the breakdown. Hope in the chaos. Answered prayers in the seemingly tangible, unanswered prayers. He had purpose in the pain, and he would bring good even out of the suffering.
THE BEGINNING OF A BREAKTHROUGH:
FAST FORWARD to a few months ago. One of the many connections my mom made was to an author of a book called “Chasing the Swallow: Truth, Science, and Hope for Pediatric Feeding Disorders” which I HIGHLY recommend. I will never forget the kindness and care I felt when the author (Michelle Dawson) took time out of her crazy day and called me. Even though she had a million things going on that day, she listened to my story and talked to me for over an hour. She made me laugh, made me feel heard and validated, and comforted me from another state away. Through talking to Michelle, she connected me to an amazing program called “Feeding Matters” where you’re matched up with a mentor (usually a mom that has been through PFD with a child/children). PFD is a very lonely and isolating road as few people understand the daily stress and grind and the constant chase of figuring out what’s going on unless they’ve actually lived through it. You feel like you’re on an island and few people actually “get it.” The first time I talked to my amazing mentor, I remember getting home from one of Jack’s evaluations and feeling defeated once again with no answers as to why he was struggling. After she shared her story with me, I just started bawling uncontrollably as it was the first time someone actually understand the intensity, stress, uncertainty, exhaustion, doubt, anxiety, PTSD with mealtimes, wanting to run away, the heartbreak, the frustration, EVERY SINGLE THING that we had experienced and been through. How almost every single minute of every single day was consumed with feeding or thoughts/plans of feeding - she had been through it and she "got it". The sense of relief replaced my feelings of overwhelmed helplessness as I finally knew someone else had been through it and was on the other side and we could get there too. That is part of the reason I took the time to write all this. My mentor helped me to finally feel validated and to feel like there was some hope again. I'm hoping our story can be the light for someone else that may need some encouragement as well to keep on going and to know that it’s ok to not be ok. Being their “you get it” person, and offering encouragement and support along the way, knowing all along how difficult this journey is and not minimizing any aspect or struggle.
My mentor actually suggested I look into gastroparesis as her daughter has it, and she had a very similar story and symptoms to Jack. After meeting with the GI specialist again and discussing the concerns, she tried Jack on a few new medicines (which he takes 5x a day) and after observation and trials, listening to his complete story for the 5th time, and putting all the puzzle pieces together, she then diagnosed him with Gastroparesis. Gastroparesis (or delayed gastric emptying) is a condition where the stomach doesn’t empty as it should so it stays full most of the day. Nerves and muscles don’t function with normal strength and coordination to empty the stomach properly so getting the right nutrition is a constant struggle, especially when it comes to kids. That would explain his extreme lack of appetite, throwing up when he actually had a “decent” meal, and why the only time he seemed to eat was a few bites of breakfast and then he wouldn’t want food the rest of the day. The meds were the real game changers. Periactin (an antihistamine but it works also as an appetite stimulant) along with a low dose antibiotic (to help his stomach empty faster) were the driving force for Jack to actually be motivated to learn to chew. We finally saw the breakthrough about 2 months before his 2nd birthday. I can still remember the first time I saw him actually rotary chew as I was overcome with the biggest feeling of relief as tears came streaming down my face. I never knew I’d be so thankful to see my son chew and actually show some interest in food. Every time I think about Jack's progress, I'm overcome with emotions and gratefulness and humbled for how God placed angels along our path and carried us through, even at times when I felt like I was at my lowest.
I’m beyond thankful to our GI specialist Dr. Safta as she was one of the few providers that really listened to everything I had to say and trusted my mom gut when things weren’t right as she kept pushing to find the right diagnosis and help as well. My best advice is, if you feel like something isn’t right, keep pushing. I can’t overemphasize the importance of getting 2nd opinions. God gave us moms that Spidey sense for a reason. Even though being an advocate for a child that can’t talk or share what’s actually going on can seem like an insurmountable challenge, don’t give up. You will get through to the other side, complete the puzzle, and see the light.
Thanks for reading Jack’s story. Though we are still not even close to out of the woods, we had such amazing progress for 2 months (just shy of his 2nd birthday) with the help of new medicines. We still have recently experienced huge regressions after he had Covid (back to him in the single digits growth %, not wanting to eat, pocketing his food even weeks after he was better), but we are getting used to our new normal a little more each day and working to accept the challenge for what it is. Even though he made about 50 steps backward again, the progress he made in the last stretch (before this current regression) is enough for me to tear up every time I think how far he's come, hope that he'll get there again, and for the people that have been our angels here on Earth, getting us through, one day at a time.
Are mealtimes still a challenge at our house? Absolutely, we still have to distract him to eat 95% of the time, but we have figured out new tools for this stage of life to make the experience as fun as possible and have overcome major obstacles. How long will the tricks and tools work? We never know. Sometimes one meal, sometimes a week. We pray for an eventual breakthrough but pray for endurance in the meantime. Do mealtimes look different than other homes? Yes, but this is for a few (very long) seasons, and we know eventually we will be able to have meaningful dinner conversations again without all the distractions. Is Jack still behind on the growth curve? Yes, but seeing how far he’s come gives me hope we are going in the right direction finally. As expected, Jack also has significant speech delays (his comprehension is great, but his expressive is far behind) since he hadn’t been using the muscles in his mouth to chew until recently, which also affects speech. We are starting speech therapy and are looking forward to watching the progress, however long it takes.
Everyone will face challenges at some point in their life. This is just one of ours. Our hope is that one day, God will use our story to bring hope and encouragement to others. Once I get a little more on the "other side" I plan on being a mentor too as the value of mentors and connecting with others who help you to feel like you're not alone is invaluable.
If you know of anyone that has been affected by PFD or has been struggling with similar eating issues, feel free to pass this along to them and reach out to me. I have created a 10-page document with learning lessons as well as all the tips and tricks we’ve found through research, connections, trial and error, and countless therapy sessions, and I’d be happy to share with anyone in need.
If you’re reading this for your child and at the beginning of this journey, well then buckle up. It may or may not be a long ride, but the faster you can embrace that this is a marathon, and maybe an Iron Man, the better. You may get super lucky and have a child that meets milestones and overcomes PFD in record time, and if so, Congrats! Celebrate the wins! But the faster you can get onboard with the “Iron Man” mentality, the more realistic the expectations you’ll have, the more calm and at peace you will be. Take it from someone that had to learn the hard way. Continue to be the best advocate for your child and get 2nd opinions (or as many as you need) to get to the root. Find a good support system, ask for help when you need it, join the “Feeding Matters” program, and know you are not alone in this journey, and this too shall pass. Hang in there and feel free to reach out to me anytime. I’ve lived through it and finding someone else that finally “gets it” can be that breath of fresh air you’ve been looking for. Figure out a way to make time for yourself as getting those breaks will help you to be a better mama and supporter of your child.
Thank you for reading and bringing more awareness to PFD . Thank you again to the people who have daily walked alongside of us through the ups and downs. We are beyond grateful for each of you and couldn't have made it without you all.