Thursday, June 28, 2012

Eve's Feeding Disorder - Life with A Feeding Tube

On April 29, 2011, Eve had surgery for the anatomical deformity I mentioned in my last post.  We also coordinated that appointment so that she could also have an  MRI and an eye exam (I will write about her eye issues later) at the same time.  We stayed overnight  went home the next day.

For the next three days Eve's feeding worsened and so, upon the recommendation of her occupational therapist, we finally relented and agreed that Eve needed a feeding tube.  We were admitted on May 3, 2011.  Upon arrival, the nurses placed a naso-gastric feeding tube ("ng-tube") into Eve's nose.  Thus, our journey with a feeding tube began. My thinking was that we could just use the feeding tube to give Eve those extra few ounces of milk each day that she refused to eat on her own.  For the first couple of days this actually worked.  In fact, on the second day she had the tube, we did not need to use it at all because she was able to drink enough on her own.

This is what Eve's N-G tube looked like.
I remember getting into heated arguments with the resident on Eve's case at the hospital about how her feeds should be administered.  The resident insisted we should give eve about ten ounces of milk on a continuous drip throughout the night.  I, however, had done my research and learned that night feeds and continuous feeds should be avoided, if possible, because the body does not normally eat that way.  Continuous feeds do not allow the stomach to expand enough that the child is able to eventually consume large quantities of food at any given time.   Ultimately, this can make it more difficult to wean a child from the tube. Also, I did not want to give Eve any more milk through the tube than was absolutely necessary.  I felt that this resident was setting Eve up to become tube dependent.    

After we went home we continued our regime of giving Eve at night only what she did not consume during the day.  However, over the course of the next month, despite my efforts at preventing it, she refused her daytime feeds more and more.  Despite our efforts to avoid it, it only took about three weeks for Eve to become entirely dependent on the tube.  It was shocking to me how quickly this occurred.  Looking back, it really makes a lot of sense that this happened.  Eating was so difficult for Eve.  She quickly learned that she did not need to do it as long as the tube was in place.

I hated that ng-tube.  It was sooo difficult to deal with.  Her face had a horrible reaction to the tape and was always red and irritated.  We never managed to keep the tube in her nose for more than a few days, as she could easily pull it out herself.  Placing the tube was an excruciating process for all three of us.  One of us had to restrain her while the other measured the tube and shoved it into her nose. She would, of course, scream hysterically the entire time.  I will never forget the time I placed the tube into her nose and instead of going into her esophagus, it came out of her throat.  I tried again and that time it came out of her other nostril.  Finally, on the third attempt it went into her esophagus.  I was constantly worried it would go into her lungs but we had been taught how to use a stethoscope to listen to the sound her stomach would make when a little bit of air was pushed into it.

Family Photo Shoot on 6/14/2011.  

If you look at her left cheek in both of these photos you can see the red marks left by the tape.
Since Eve's feeding was worsening rather than improving with the feeding tube, her GI doctor suggested pretty quickly that we transition to a gastronomy tube ("g-tube").  We thought there was a possibility that she might do better with feeding with a g-tube instead of the ng-tube.  Ng-tubes cause irritation of the throat and nasal passages, and they tend to exacerbate any existing problems with reflux.  Eve's g-tube was placed on June 15, 2011.  We stayed at the hospital for two nights to ensure it was working for her.

Not long after the g-tube was placed, Eve started throwing up her milk.  Sometimes just once a day, sometimes, several times a day.  We tried different formulas, different medications, different feeding schedules.  We had to make sure not to make more than one change at a time so we could figure out what helped and what didn't.  Since she was throwing up so frequently, the doctor advised against giving her large volume feeds overnight because there is a risk of aspiration if she were to throw up during her sleep.  So we wound up having to giver he continuous feeds during the night after all.  The regime that wound up working best for us was as follows:

  1. Nexium (for GERD) 2x a day exactly 15 minutes before each feeding.
  2. Azithromyacin (an antibiotic that helps with GI motility) in the morning but only when her stomach was completely empty, otherwise she would throw it up.
  3. Overnight continuous feeds.
  4. 4 daytime bolus feeds of 4 ounces over a period of 30 minutes while she is in her high chair, and keep her in her high chair for another 30 minutes.
It took us four or five months to figure all of this out but with this regime she threw up less frequently, maybe a couple of times a week instead of every day.  Some weeks were better than others.  If she had any type of head cold, her stomach simply would not tolerate fees and she would throw up more frequently.  It was so difficult to see her struggle with throwing up.  Eve is such a happy child normally but when she would throw up, she would be miserable, and all I could do is hold her and comfort her while it passed.  Of course, all of the reflux and throwing up made her even less willing to try liquids.  Not long after the g-tube was placed she  started refusing all liquids of any kind altogether.


When Eve was about six months old, we began introducing solid foods.  Although she was refusing all liquids, I hoped that she would do better with solids.


Feeding Therapy - 7/6/11
Feeding Therapy - 7/6/11



















Every time we would feed Eve during the day, we would offer her food by mouth.  The idea behind this is that, at minimum, she should associate being offered or tasting food with the feeling of her stomach being filled.  John and I are extremely consistent about offering her food any time we giver her feeds through the tube (if she is awake at least).  Unfortunately, more food winds up on her than in her.  Here are a few examples:

7/21/2011 - Avocado
7/21/2011 - Avocado















7/22/2011 - Banana
7/27/2011 - Carrot
video

She will typically open up for one or two bites but she never consumes very much volume of anything.  Earlier this year I thought we had a breakthrough with re-fried beans.  I remember she ate about a tablespoon of them and I was in tears because that was more than I had ever seen her eat before.  She showed interest in them for a few weeks but then lost it.  We continue offering and offering. Sometimes she shows some interest but most of the time the food winds up on her or on the floor.  Lately she has started spitting the food back on whomever is offering it to her.  She used to refuse by looking in the other direction and clamping her mouth shut.  Now she can sign "all-done" and will sign it repeatedly until you stop offering whatever it is you are offering.

I have a love-hate relationship with the feeding tube.  On the one hand, I hate that my child can't eat. I hate that she can't enjoy the wonderful sensory experience of food.  I hate that feeding her is a seemingly never-ending battle.  Food is an extremely important part of life in my family.  John loves to cook and, for us, it is food that brings people together.  Any time we have family over, we plan and cook delicious meals and consume them together.  It saddens me when I wonder whether if Eve will ever be able to be part of that.  On the other hand, I have a huge sense of relief that she is able to get the nourishment she needs to grow.  It wasn't until after we got the feeding tube that Eve really started developing her gross motor skills.  It enabled her to focus her attention on things other than eating.

Coping with a child with a feeding disorder has been extremely difficult for me.  It is a constant struggle and a constant worry every day.   I don't know when or how we are ever going to get her to eat normally.  I don't know if she will be able to enjoy food together with us as a family.  The problem is, the more anxious and nervous, and forceful I am towards making her eat, the less inclined she is to want to eat.  It is a vicious cycle.  Often feeding disorders start as a physical problem and develop into a psychological disorder that affects the entire family and the entire feeding process.  Feeding is no longer something the child can enjoy, it is something that they are constantly forced into.  I am still working on just letting it go.  There is only so much I can do.  The more I try to make it happen for her, the more she will feel imposed upon and forced into it and it becomes a battle.   I have to let it go. . .

Over a period of about six months we were able to increase the volume of Eve's feeds to five ounces and reduce the amount of feeds we give her during the day from four to three.  We are working on increasing her tolerance for higher volumes of formula.  Right now, Eve rarely ever throws up - so that is one minor success story.  When she finally stopped throwing up we were able to start giving her large volumes over a short period at night rather than continuous feeds.  She is consistently growing along a healthy and proportional height-weight curve.  As far as what she takes by mouth, I cannot get her to drink more than a couple of sips of any liquid.  On a good day she will eat about 5 goldfish or cheerios and maybe a few spoonfuls of a soup or puree.  Where we are at now took so many months of constant daily struggle.  These accomplishments may seem small because we have such a long way to go but, for us, these are huge accomplishments.  


Eve still has little or no desire to eat or drink.  Most of what I offer her winds up on me, on her, or on the floor.  Her GI doctor says he will not try to wean her from the tube unless she shows more skill at being able to drink.  However, because she is on the tube, she refuses to drink and so cannot gain the skill.  I honestly do not know how to break this cycle.  It is possible I might snap at the next person who asks me when Eve will be able to stop using the tube.  Although it may seem a relatively innocuous question coming from someone who has no familiarity with Eve's issues, for me, that question triggers so many feelings of anxiety, and anger, and helplessness.  I do not know the answer, and I wish I did.

For a long time I struggled with tube-feeding Eve in public.  People, especially children, stare.  I am sure it is because it is something they have never seen before, but it does make me self-conscious.  It was really the first visible sign that something is wrong with Eve.  It makes us look different.  I remember asking another woman I know who had a child (who passed away in her early twenties) with a feeding tube how she dealt with this issue.  She told me she would never feed her child in public - she would take her child to the restroom to feed her.  That woman's comment was really a wake-up call for me.  Feeding someone in a restroom is simply repulsive.  Would you go to the restroom to eat a sandwich?  There is a risk that her food could become contaminated, and certainly the odors of a restroom are not consistent with encouraging a person to eat . .  .

After thinking about the only real alternatives to feeding Eve in public - not going out of the house or feeding her in places like restrooms, I slowly became more comfortable with doing it.  I also realized that, as Eve grows older, she is going to have to learn how to cope with people's questions and looks, and I am going to have to be a role model for her and teach her how to handle those situations.  If I am ashamed of how she eats, she will pick up on those feelings, which could have long lasting implications on  her self-esteem.  Instead, if people stare or ask questions, I explain the situation.  Interestingly, children seem more understanding and less judgmental than adults.

A few weeks ago I was at a friend's baby shower.  I was drinking a Diet Coke from a can and, miraculously, Eve actually showed some interest in drinking it.  Now, certainly Diet Coke is not an optimal drink for a seventeen month old child.  On the other hand, I try to capitalize on the situation any time Eve shows the slightest interest in drinking.  In my judgment in that moment, I thought a sip of Diet Coke would not hurt her, and it could be an opportunity for her to actually get some practice drinking liquids.  So I offered Eve a sip of my Diet Coke.  Most of it spilled onto her and onto the floor.  Afterwards, I caught a glimpse of an older woman who had witnessed what had just happened.  She had an expression of utter disgust and judgment against me over what I had just done.  At first, I was angry.  Who did she think she was?  After thinking about it some more, I realized that, before having Eve, I might have reacted the same way.  As I  realized this, my anger at her judgment subsided. I am now a better person than I was before I had Eve.  Having gone through these experiences, I am much less likely to judge a person, especially a parent, based some initial observation.

To end this post on a positive note, here are some photographs of a moment in time where Eve did enjoy food.  It does happen sometimes.  These photographs help remind me that there may in fact be a day when Eve can consume and enjoy food on her own.

Eve's First Thin Mint - 2/3/2012









6 comments:

  1. Love that her taste buds seem to work, and she can tell when something is yummy.... even if she never feels hungry, she might end up liking the taste enough to want to indulge in it. After all, who can resist a chocolate mint cookie? I feel more proud of you and John every time I read one of these!

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  2. ...and I thought *I* loved Thin Mints ;) I love the sheer joy in her expression, whether it's from the taste of the food, or your obvious smiles and happy expression at seeing her eat it! Can't wait to see you guys in August!

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  3. I really enjoyed reading this, Athena. I gives such an insight into the constancy of dealing with this situation on a daily basis. You are a remarkable Mum, and amazing little family and the cutest little girl ever. Sending love. xxx

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  4. Thanks for including us in on your journey. I am able to absorb so much more from the printed word. I can relate to the "pre-struggle" judgmental character flaw. That ugliness was revealed in me a few years ago when our family faced a tough challenge. Loni

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  5. I really love these posts. It's great to be able to read updates on how Eve and both you and John are doing. Slow and steady wins the race and your family will always be in our thoughts!

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  6. Hi! Just wandering how r y doing guys? Hows Eva??

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