Without a Crystal Ball

Our Journey through Chronic Illness

Those very first days of life he breathed, he had this tiny tube that went up his nose. Doctors and nurses said he lacked strength to take in the nutrients on his own. I watched our feedings be timed, and I would beg him to just suck a little bit harder. He fatigued so quickly, and over time of not eating enough the milk was put to a pump and down his tube it went. After a month of watching him struggle, I fought the doctor and won. We removed the tube, and inside I was totally and completely panicked. He came home and he still ate poorly. We counted every milliliter and kept a log. He grew poorly.

He finally was able to nurse around 4 months old. He still wasn’t taking in enough calories. Doctors wanted me to supplement it with a bottle of high calorie formula. However, he wouldn’t take a bottle. In fact, it was the beginning of his oral aversion. I was unable to leave him for any length of time because he would not bottle. As he grew to a year old, he did not want to eat solid foods. We tried every color food and while some would get in his mouth, it was clear his mouth didn’t know what to do with the food. When we moved to foods with more chunks, he started to choke and sometimes would vomit. We spoke to his doctors, and they all said it wasn’t abnormal for a child to struggle learning to eat. We mixed every substance in to food to get in more calories. We mixed in oils, high calorie formula, and we experimented with different kinds of butter. Nothing seemed to help him gain weight.

It was about the time he was 15 months that we introduced the iPad to help him eat. We noticed he was able to chew and swallow a little bit better. He seemed to just put the food in his mouth and we would watch some of it go down. It was also during this time that we noticed the huge pockets of food in his cheek. The iPad certainly helped him swallow some of it, but he was still not getting enough. Each time we went to the doctor I felt so nervous I could feel my stomach gurgle and rumble. He would lay or step on the scale and I would hold my breath. Some appointments were good, and others were really bad. The scale had a way of determining the outcome of my entire day. A few times a dietician was escorted in to the room to talk to us about methods to help him increase caloric intake. It was everything we were already doing, but I would just nod my head and smile. I would update my social media, and I would get a slew of well meaning suggestions by friends and families. Unfortunately, none of it was groundbreaking. We tried smooth foods, skinless hotdogs, skinless fruit, mashed up foods, foods that melted easily in the mouth, and the only thing he could swallow with ease was Yogurt.

The hardest part in all of it is that it’s not for a lack of wanting to eat. He truly likes to eat certain foods. He loves Doritos, Crackers, Cookies, Grilled Cheese, Hot Dogs, Chicken Tenders, Chicken Nuggets, and Macaroni and Cheese. In many ways the foods he wanted were extremely typical for his age, but he simply could not eat them. We would sit at dinners with family and friends with nervous anticipation of being judged that we were still spoon feeding our 2 year all his food. He couldn’t use a spoon. He would refuse a spoon to his mouth, and wanted everything to be fed to him by hand. It was around this time that he started to choke and vomit nearly every day. He would stuff the food so full in his mouth that eventually he would vomit it all because he simply could not swallow. I would feel embarrassed as he puked on a friend’s dining room table, or he would vomit at a restaurant.

Foods started getting cut out after he started working with a Speech Therapist. We could no longer feed him anything difficult to chew. No more breads, noodles, and certainly no hot dogs. He loved to eat chicken, but she wanted all protein mixed with gravy. As he turned three, we were measuring how big the bolus was in his cheek at the end of the meal. There was no way of knowing how much he was actually getting. His diet was becoming more and more limited. His therapist would no longer allow most fruits or vegetables. We were told he could have them pureed or mashed, but he refused to eat them because of the texture. As foods got cut out, his weight started to stall.

Just a few months ago, we were told it was no longer safe for him to eat any foods that were not blended and soft. We had to take away all the things he loved the most. No more tater tots and chicken tenders with ranch. He couldn’t have any more peanut butter toast. We were given a sheet of how to blend food. Every single meal he fought us tooth and nail because he didn’t like the texture and would refuse the spoon. Then I did what I feared the most and I decided to weigh him. I was in panic as I read the scale. After our hard work he had lost 2 pounds. I knew I couldn’t keep going like this and the terror of what it meant kept me up at night. Our path was leading us back to the tube. In my heart I knew we had tried it all. We have tried every kind of food, all the fattening oils, we made food a million different ways and experimented with blending. None of it seems to be working. We know the only logical step now is that he needs a feeding tube. At age 3.5, we cannot keep up with his caloric needs for growth. His aversion to spoons and textures have complicated our ability to serve him a blended diet, and his inability to chew and swallow has eliminated most food from his diet.

I feel like we are taking a huge step backward by getting a feeding tube placed, and yet I am reassured by friends, family, therapists and doctors that this will actually help him thrive. We will be able to continue therapy, and he can develop skills without associating eating to being stressful and unpleasant.  Anything he cannot take via his mouth can then be given to him in a tube, and we won’t have to worry about if he’s getting enough to grow. Quietly, I remind myself that this will only be temporary. Eventually he will learn to eat, and through therapy he will build skills to overcome oral aversion. In my heart I know this is the right decision, and I’m still working through in my mind that we aren’t hindering his development. What I do know is that you can try it all with feeding. You can get super creative and follow every single persons advice, and the biology and neurological make up of your child is what actually determines how it will go. At this point, I’m waving the white flag. We are going back to how he started life with a tube in his body. This time in his belly, and with the hopes that this will enable him to take a giant leap forward.

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4 thoughts on “A Journey with a Pediatric Feeding Disorder

  1. Kira McCall says:

    It’s a shame that the experiment with blending food didn’t go as well as planned. However, maybe if he goes back on the tube for a while, he will be able to learn how to eat without all the unpleasant sensations. I can’t imagine what it must be like for him to be going through all this. He’s probably just as frustrated as you guys are, and I wouldn’t blame him if he was. I know I’d be if I had such a hard time eating. Y’all inspire me, and I will continue to think about and pray for you all. God bless this Sign’Sign!

    Liked by 1 person

  2. Alison B says:

    Wow, thank you for sharing

    I am a Speech Language Therapist, I was working as a generalist and now I am working as a specialist in the field of paediatric feeding and swallowing. My heart goes out to you! I hope you know that you are not alone in this journey, All families have their own unique story but are united by experiencing what it’s like to have a child that won’t or can’t eat.

    Having to have a PEG is a scary time, so many parents are plagued by the “what ifs” and there is a lot of settling down initially as your child gets used to having so much food in his belly. The assurances you have received are right. A PEG takes away the worry that he isn’t eating enough and majorly takes the pressure off food so he can learn to enjoy what he can manage.

    I used to think (when I was a generalist) that I had failed if my client ended up on a PEG and once said to a client “I know it’s hard but you don’t want so and so to end up on a PEG” . Wow that is something I wish I could unsay. Moving to a PEG was such a relief for them. Their bub was already on NGT, but the tube was making life so hard, the PEG improved their quality of life so much. Once as she was reinserting the NGT as her daughter struggled and cried, she looked at me heart broken and said ‘this is my life’. It was then I knew I would never use PEG as a ‘threat’ again!

    My clients never stop teaching me!!

    All the best, thinking of you and hope life gets easier and your little man gets stronger. What a cute man he is!

    Liked by 1 person

  3. Tracey Drexler says:

    My son has had a feeding tube since August. He’s only 8 months old and has a twin brother who eats fine. It may seem like the end of the world at first, but it’s not. You get used to it. At the end of the day I realized that whatever gives him the best nutrition to have a good start at life is best.

    Like

  4. I feel your pain. My daughter has been tube fed since birth. Last year her NGT was replaced by a PEG and the life got a lot easier for is all. I would do anything to get my girl to eat. But I’ve realised that it’s down to her. I hope with time that she will. Chin up, you’re doing great x

    Like

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