Feeding Disorder Hell & Our Narrow Escape

Even as a nurse, I can honestly say before I lived it myself, I had no idea how difficult it is to parent a child with a feeding disorder. In my experience, living with feeding issues is, in some ways, more difficult than dealing with other types of developmental issues. You can take an occasional break from other types of therapy, but even if you go on vacation, feeding issues go right along with you. The need to keep your child fed is always there, right in your face, all day, every day. It is kind of like water torture. The drip, drip, drip of water on your head isn't too difficult to take at first, but the longer it goes on the harder it is to cope.

Sometimes people on the outside looking in have a hard time understanding feeding issues. If your child can't walk, they seem to be able to understand that more easily than if they can't eat. Someone once told me they thought that the reason that Morgan didn't eat, and threw up all the time, was because I spoiled her. She thought Morgan was just being difficult. (No. I didn't hit her when she said that, but I'd be lying if I said I didn't bite my tongue...hard.)

For many people it is not easy to imagine how anyone could have so much trouble doing something that seems so simple to them. While eating may seem pleasant, easy, and natural to most people, it is really a very complex and nuanced behavior. It requires quite a few coordinated skill sets, as well as the proper functioning of many anatomical structures, muscles, the nervous system, the digestive system, the endocrine system and the sensory system. There are a great number of points along the way where things can go wrong. If just one thing is not functioning properly, or is not timed just right, the result may cause eating to become unpleasant, difficult, or even impossible to do safely.

When Morgan was in the NICU, she was fed straight breast milk into a feeding tube at first. It was a NG tube, one that goes from the nose, down to the back of the throat, to the stomach. Once the doctors were fairly certain her intestines would hold up under the strain of eating months earlier than they were designed to, they told me I had to let them supplement my breast milk with formula. I was told that human breast milk did not contain enough calcium and phosphorus for a micro preemie who was trying to build good teeth and bones, while simultaneously fighting for her life. I was told her teeth and bones would suffer life long effects if I didn't agree to the addition of formula.

Looking back now, I can see that Morgan's issues with reflux began shortly after formula was introduced, but at the time, I did not make that connection. I was told that almost all micro preemies have reflux. The reflux continued throughout the remainder of her NICU stay. Not long after it started, Morgan developed what is called oral aversion, which means she did not want anything in her mouth. It is an issue for many babies who are born critically ill. If you think about what the first oral experiences are like for them, and compare that to what a typical, full term baby experiences, you might be able to understand why. Morgan's first oral experiences were all very negative. Having a breathing tube shoved down her throat, and a feeding tube shoved up her nose, is quite different than what a typical baby experiences.

The first oral experiences of a healthy full term baby are typically that of feeding, and feeding is a self rewarding behavior. The baby does this suck, swallow, breath pattern, and that behavior is rewarded by their hunger going away. Healthy babies quickly make the connection between the two. In contrast, Morgan was asked to feed from a bottle for the first time when she was six weeks old. She had six long weeks of negative oral experiences before that first bottle, which had taught her one lesson over and over again, that "things in my mouth are bad." Also, for the first six weeks, there was no connection between sucking, and her hunger going away.

The fact that what they were feeding her turns out to be something that made her sick, only made matters worse. Although she was deemed medically safe to swallow, she was a slow eater, slow enough that the doctors wanted to place a permanent feeding tube. There was quite a bit of tension between me and the NICU doctors after I told them my definition of failure to feed was not the same as theirs. I was not willing to put my daughter through a third surgery, just because she didn't eat fast enough to suit them. I did not say I would never consent to the placement of a feeding tube, just that she had to fail first. As long as she was able to maintain her growth curve, not lose weight, or fail to gain enough weight, we would give her more time to figure it out. The doctors did not appreciate me going against what they thought was best.

Morgan in the NICU, giving it her best effort.

Let me be clear here. I am not anti G tube in general, as a nurse I am certain that they are very appropriate and necessary for lots of people. I just knew it was not right for my child. I am not even sure how I knew that. It was just a strong gut feeling.

Because my son had also had developmental issues, I already knew several speech therapists, and I talked with them about Morgan. I was told that kids who are borderline oral feeders, often quit eating by mouth all together after a feeding tube is placed. That makes sense, if you think about it. Why would anyone continue to do something that was difficult and uncomfortable once they figured out they didn't HAVE to? I mean, you gave up crawling as soon as you learned to walk, didn't you?

Eventually, Morgan's slow feeding was the only thing keeping her from being able to leave the NICU. The staff made it clear to me, it was my fault she wasn't home yet. If I'd just consent to the placement of a permanent feeding tube, a G tube, Morgan could go home. Trust me, after months of being in the NICU, I wanted her home very badly, but I wasn't going to let them force me to do what I knew in my heart was not right for my daughter. Every time I thought about agreeing to the surgery, my gut would scream at me that it was not the right path for us to take. Some day I'll tell you why I swore I'd never, ever ignore that voice again, but that is a painful topic for another day.

The day Morgan turned 4 months old, (2 weeks old adjusted), she was finally able to meet their feeding criteria, and come home. I was thrilled to take her home, but knew the road ahead would be difficult in many ways.

Logan meets his sister for the first time. She is four months old.

I don't know what formula they were feeding her in the NICU, but when we went home I was told to supplement my expressed breast milk with Neosure formula. Within a week of coming home, Morgan went from spitting up frequently, to actually vomiting several times a day. The NICU follow up team, which is the same group of doctors who saw her in the NICU, were still angry with me for refusing to place a feeding tube. They made it clear, they would would not help me with her feeding issues, not unless I agreed to the G tube.

She had come home from the NICU on Reglan, to help her stomach empty faster, and Zantac to reduce the acid in her stomach to protect her esophagus from damage. Neither of these medicines treat the reflux, only the symptoms. After a few weeks at home, Morgan began to projectile vomit, and it was nearly impossible to keep her fed. When I said I thought it was the formula that was causing the problem, I was told that it was NOT the problem, and that she "has to have THAT formula." After three months, when I called to ask for her medicines to be refilled, I was told by one of the doctors, "I just want to you understand that every doctor in this group believes you are not doing what is best for your baby, and unless you agree to a feeding tube, this will be the last time we refill her medicines." She couldn't have hurt me, or angered me more if she had reached through the phone and slapped me. I was livid. I hung up the phone, and fired them from the case. Please understand, Morgan was NOT a skinny baby. Her weight stayed between the 50 and 75 percentile for her adjusted age. We were keeping up. It was just extremely hard to do.

This picture was taken about the time that the doctors refused to refill her prescriptions if
I contintued to refuse the G tube. Does she look skinny to you?!

My regular Pediatrician, who had known me since Logan was born, was much more supportive. He told me, "Do you know who will tell me it is time to place a feeding tube in Morgan?....You will tell me. I know you will make the right decision for you child." He took over writing for her prescriptions, and I never spoke to the NICU follow up team again.

We went on, in more or less the same way, until she was a little over 2 years old. My life became this vicious little cycle of pumping breast milk, adding the formula I hated, feeding it to her, watching her vomit, cleaning up the mess, and then I'd start the process all over again. I even scooped up and measured what she threw up, so I could keep track of how much she kept down. I weighed her every day, so I could track her growth.

While a puke bucket was a nice idea in theory, it hardly ever worked in practice.

Not adding formula was not an option, since I was physically not able to make enough breast milk to keep up with her. Even though I was pumping 8-12 times everyday, maintaining a milk supply by pumping alone is not easy, and only gets harder the longer you do it. When Morgan turned 2 years old, I was still getting up at night to pump. Feeding her consumed my life. On a good day, I would spend 6 hours just feeding her, not including pumping, or clean up. On a bad day, it was more like 8 to 10 hours. As she got older she was able to use her arms to push the bottle away. Sometimes she would gag at the mere sight of the bottle. She got to the point where she would fall asleep as soon as I started feeding her, at the time I didn't realize why. It was only much later that I understood. Going to sleep was the only way she could escape the torture I was putting her through. She knew what I was feeding her made her sick. She tried everything she could to tell me, but because the feeding issues were just a part of the global developmental delays that she had, she lacked the communication skills to make me understand. You can't imagine how awful I felt when I finally understood. The guilt I feel over that is immense.

Over time, the doctors had given me a variety of explanations for her vomiting. At first, it was because she was so premature, then because of her low muscle tone in her abdomen. I was told IF she ever learned to sit up on her own, that the reflux and vomiting would go away. I just had to wait it out. Then I was told the vomiting was caused by her brain injury, that she was just over stimulated by her environment. The over stimulation was what made her vomit. Her Neurologist said he thought there could be a glitch between her vision and balance that caused her to vomit. I was told repeatedly, it was absolutely NOT caused by the formula, and that I should either learn to live with it, or consent to a feeding tube.

I felt like the doctors had let me down. They had tried to force me to do what I knew was not right for my daughter, so I was not eager to have yet another set of doctors tell me what they all had, that my daughter needed a feeding tube. I always knew there was an answer out there, a way my child could comfortably eat. I just didn't know what it was. As she got closer to 2 1/2 years old, I was exhausted and desperate. I knew we were running out of time. I knew when she turned 3 years old, she would have to start preschool, so she could continue her therapies. With her away from me, for even a few hours a day, there would be no way for me to maintain her calorie intake high enough to avoid the feeding tube. I couldn't choose between her therapies and her nutrition. I had to find a way for her to have both. If she was going to have to go to school with a feeding tube, I wanted the site to be well healed before she entered a school full of new germs. Seeing no other way around it, I reluctantly made an appointment with a well respected aerodigestive feeding team out of state. We traveled there several times, and had a huge GI and respiratory workup done.

While we were doing this workup, Morgan had the first of the 4 mild GI bleeds she would have that summer. A biopsy confirmed she had both acute and chronic gastritis, (inflammation of the lining of the stomach). The inflammation was so severe, it was causing her stomach to bleed. She began having coffee ground looking vomit, and unmistakeably stinky diapers that as a nurse I knew meant she was bleeding into her GI tract. At the same time, she began to wake up every night, about an hour after going to sleep, crying and thrashing inconsolably. She would eventually vomit, then go back to sleep, and sleep the rest of the night. She was started on Prevacid, and Carafate to treat the gastritis.

In the end, what we were told was that aside from the fact that her esophagus doesn't contact as strongly as it should, there was no obvious physical reason for her vomiting. The ENT there told me, "I think this is just classic grade 4 bleed swallowing issues." When I said for the hundredth time that I thought it was the formula, the GI doctor said, "I am all but certain, formula is not her problem." As I had predicted, I was advised to see the pediatric surgeon to schedule surgery to place a feeding tube. Because of her chronic vomiting, the GI doctor initially wanted to place a GJ tube. That would mean she would be fed into her small intestine, which would require her to be hooked up to a pump nearly all day every day. Despite her Neurologist's dire predictions, by that age, Morgan was running everywhere all the time. She was so active, I couldn't imagine having her hooked to a pump all day. I managed to talk the GI doctor into trying a G tube first, which would allow me to feed her "meals" instead of doing a continuous feed.

We met with the surgeon and set a date for the surgery. My gut was screaming at me so loudly, I could hardly hear anything else. The closer to the surgery we got, the more panic I felt. I was running out of time to find a way out of this. Two days before the scheduled date, I couldn't sleep so I got up, and got online. I had been lurking on a blenderized diet group on yahoo for a little while. I was planning on dumping formula as soon as the G tube was in. Because of her very low volume tolerance, I didn't dream that we could do blended diet orally. I came across a post where someone mentioned they always had their son eat a little of his blend by mouth, then she would tube whatever he couldn't finish. I decided, I was going to try a blended diet in her bottle. At this point, what did I have to lose? I sat down and wrote a recipe for a blend that would cover her nutritional needs, but did not contain any of the foods most commonly known to cause allergy or food intolerance. If memory serves, I believe that first blend consisted of baby rice cereal, vanilla rice milk, stage one baby food beef (with broth not gravy, the gravy one contains corn), stage two baby food bananas, stage two baby food sweet potatoes, and a little olive oil. I used http://www.choosemyplate.gov/myplate/index.aspx/ to figure out how much of each food group she should be getting a day, and http://nutritiondata.self.com/ to figure out the calorie content of the foods.

By the time Morgan was up that morning, I had made her first batch. I sat down with her, knowing this was my hail Mary shot. If this didn't work, we would have to go through with the surgery. I said a prayer, and gave her the bottle. I had no idea if she would take it or not. She did. Back then, she never took more than two ounces of formula at a time. I watched with tears in my eyes, as she polished off a full 4 ounces before she stopped. I sat her down on the floor to play, and waited for her to throw up. She didn't. I got up the next morning, and realized that for the first time she had gone 24 hours without vomiting. For the first time in a very long time, I felt hope. I knew in my heart, I had found the answer I had been looking for.

I called the doctors, explained what I was doing, and told them I wanted to postpone her surgery. The doctor wasn't happy to hear the news. He told me if we didn't do the surgery as scheduled, it would take months to get her back on the schedule. He said he was sure I couldn't do blended diet orally, and that in a few days I was going to be very sorry I cancelled. He said he understood that I probably felt like placing a feeding tube represented a failure on my part, but that I had gone above and beyond to avoid it, and it was time to have it done. I told him no. I said I would need months to know if this was going to work anyway. He asked me to keep what would have been a post surgery follow up visit, which was 30 days away. He said he'd look at her then, and we'd see how she would grow on blended diet.

Morgan grew just fine on blended diet, much better than she had on formula. Her color imporoved. Her hair & nails started to grow. She got sick less often. When she did get sick she got over it faster. She's never had one drop of formula since. Very slowly, I added one new food a week until I found a pretty good variety of foods that she can tolerate. Among other things, I have figured out that she does not tolerate any form of corn. Since all of the formulas we ever tried contained corn syrup solids as their main source of carbohydrates, that one ingredient doomed each of them to failure. Even Elecare, which is the go to "hypoallergenic" formula contains 53% corn syrup solids. (Yuck.) Although Morgan couldn't talk, her response to Elecare was, "No thanks. I'd rather die." She drank one ounce and went on a hunger strike for 24 hours. Now I understand why.

Something I wasn't sure I'd ever get to see, Morgan
happily, and comfortably feeding herself.

Obviously, food allergy or intolerance is not the only cause of feeding issues, but I do think it is something that is far too often ignored, or discounted as a possible cause. The doctors in our life did us a great disservice by not investigating the cause of her vomiting. They just wanted to treat the symptoms. The only way out for us was to do an elimination diet, find the culprits and avoid them. It is not a quick process, but it was our path out of hell. It was well worth the effort.

Thanks to the blended diet, we have escaped our feeding disorder hell. I shudder to think how close we came to being trapped there. Does Morgan eat like a typical 4 year old today? No. Due to her stroke, she will probably always have trouble with solids, since her esophagus doesn't contract as well as it should. She has some low muscle tone in her mouth, so she likes to lay down to eat. That way gravity helps her, and she gets less orally fatiqued. Honestly, she eats better than any other child I know. She gets a wonderfully healthy blended diet, full of whole foods and no garbage. She happily asks for her bottle, and is able to feed herself independently. She no longer throws up. She hasn't had a bout of gastritis or a GI bleed since we dropped formula either. She is growing like a weed, and is tall for her age. Her weight is fine. I no longer count calories. We're a world away from where we were in September of 2009, when I started her on blended diet.

I am sometimes asked if Morgan will ever "eat like a normal kid". The answer is probably not. With her pretty long list of food sensitivities, processed foods are pretty much not an option. Even if she could swallow solids easily, dhe can't eat McDonald's etc. She is comfortably meeting her nutrional needs, something I honestly wasn't sure would ever happen, so I am okay with where she is feeding-wise. I have a limited amount of time and energy and I have decided to devote it to what I consider to be more important areas of development for her. Communication and behavior issues are my focus for now.

Blended diet has greatly improved not only her quality of life, but that of my whole family. Getting here was very difficult, but I am not sorry I stuck to my guns because in the end placing a feeding tube would not have solved her problems. It would have just made it more convenient to give her the very thing that was making her so sick in the first place.

If you are interested in trying blended diet, here is a link to a facebook note I wrote about it. It contains enough information and some helpful links to get you started:

https://www.facebook.com/home.php?ref=hp#!/groups/lovingamiracleismoving/doc/10150277569134349/

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To the special needs parents who read this, I would like to invite you to join my facebook support group for special needs parents:

"Loving a Miracle - Special Parents Supporting Each Other."
This is the original support group, and all content is open to the general public.
https://www.facebook.com/#!/groups/lovingamiracleismoving/

There is a closed group, for those of you who would like to post things outside of the view of the general public:
"Loving a Miracle - The Special Parent's Safe Zone."
https://www.facebook.com/#!/groups/lovingamiraclethesafezone/

There is also a public PAGE.  This is where I post information and links that I think are helpful to special needs parents.
www.facebook/lovingamiracle

Permission to repost/reprint: If you would like to obtain permission to repost or reprint this post, please send me an email to kristinablizzard@yahoo.com. Thank you.

- Kristina Smith Blizzard