Tuesday, February 7, 2012

Feeding Therapy (otherwise known as the most frustrating, pull your hair out, therapy of all time)

Most have a love/hate relationship with feeding tubes. We are no different. If I'm honest, most of the time, I hate the tube. But it's more than just hating the tube. It's the fact that Jack can't enjoy eating.

I hate that Jack can't just sit down and eat a cookie. I hate that he can't order off the kids menu when we go out to eat. I hate that he can't enjoy an ice cream cone on a warm summer day. I hate that he can't eat Thanksgiving dinner with us. I hate that he can't eat his own birthday cake. I just wish that Jack could eat more than baby food.

But the alternative? That is where the love comes in.

There are many medical reasons why a person may not be able to eat. For Jack (and many other preemies), gastric reflux can play into eating. When it is painful, why would you stuff yourself silly? Others may struggle with the motor skills required to eat. Still, others may have issues with digestion and motility. And this is just skimming the surface of reasons why some can't eat.

For Jack, through extensive testing and trial and error, we have our overall diagnosis: Oral Aversion.

This is oftentimes the hardest to treat, because much time is spent on overcoming just the fear of eating. Being intensely hungry doesn't always cut it.

In the NICU, we knew we were going to have to start feeding therapy right when we got home. The problem in our small state and probably in other, more rural areas, is that feeding therapists are hard to come by. And it's sad to say, but we floundered for quite a while, because we had no one to help us. We finally ended up going to Seattle Children's Hospital for an intensive (which I will blog more about tomorrow) and because of that trip, we now have our current feeding therapist.

Feeding therapy is, in my opinion, the most frustrating, slow-going process. You almost never see immediate results. In fact, it often takes YEARS to see results. Progress is very hard to measure. Feeding therapy is built on trust. It is a very complex thing to eat. You have to learn to be OK with food on your lips, in your mouth, and down your throat. You have to learn how to chew. How to swallow. Learning to trust each of those steps can be daunting to a child who has an intense fear of things near or in their mouth.

Typically developing children do not experience the oral trauma that some preemies face. Let's look at it this way - What is a baby's very first experience with their mouth and food? Is it the comfort of their mother's breast? What if your first experience with your mouth was a tube being forced down your throat? Does that feel like choking? What if that tube stayed there for months? Your whole oral motor development would be thrown off.

Overcoming that trauma is the goal of Jack's feeding therapy. Since we have now been at this type of therapy almost two years, we are now starting to see the progress. Jack can eat purees now. Very slow going, but progress! We'll take it.

I can't wait for the day when Jack asks me for a cookie... and then eats it. What a day that will be.

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Kristi DeLeurere said...

I know what you mean! My little boy has a severe oral aversion from vent dependence, reflux and motility issues. We have been in therapy for about 2 years and he only just started drinking some water and eating some bites of pureed food. I feel like a drill sergeant every day trying to make him take so many bites of a food (not to mention the other things that he needs to work on for his development). I can't wait for the day when my son asks for any type of food and then actually enjoys eating it!

Jay, Gina, & Ruthie said...

Thank you for this! :)

Julia said...

I completely agree with you regarding oral trauma in the NICU. I feel like the last 7 months have been an uphill climb ( while also pushing a very large boulder along!). The progress has been painfully slow and at times it feels none existent!! How do you cope with the fact that it won't happen today or tomorrow or even in few months?? How did you help Jack develop his language? I feel like Jack is the closest thing that I have to a mirror for Colin's progress.. While Colin has additional issue of having a smaller than "normal" head and early fontanelle closure (9months) the specialists don't seem too freaked!! Any pearls of wisdom for a neurotic mom would be appreciated!!

Jessi said...

@Julia - I just try to let myself be OK with the fact that it won't happen today, tomorrow, or even in a few months. It is actually pretty free-ing in that sense. I just let it be. Kind of like a lot of things in preemie land! My worrying, pushing, etc., are not going to change anything. It has to be up to Jack and what he is comfortable with.

As for developing language, we work closely with our speech therapist. We are teaching Jack signs and just general speech therapy stuff. Jack's issues are all so multi-layered. It's hard to tell if something is coming from his oral aversion, neurological issues, or the like.

I guess short story, is just letting Jack develop on his timeline. Go with the flow... you can't rush it.

mouse said...

I'm really sorry that you are having a tough time. Oral aversion is so horrible, feeding seems so natural so to not be able to enable your child to do so is one of the most frustrating things ever. My daughter is 17 months, so quite a bit behind your journey, but so far only eats yoghurt approximately once every few months. We're in the UK and currently we personally do not have access to feeding therapy so have the freedom to do everything at home, albeit with a lot of guidance. It is so very very slow. I look forward to the day that we can both eat together. Glad to hear you are making some progress though, however small or slow. Go Jack and go Jessi :)

Jessi said...

Thanks mouse, for the comment! Great hearing from another parent who gets it!

Michelle said...

Jessi - I just wanted to say I'm thinking about you. I feel like even though Cade refused to eat anything by mouth for almost a year, had a g-tube, and had several feeding therapies to overcome his oral aversion, that is nothing to what you guys have been through. So, I can only imagine how frustrating the process is for you when you just want your child to eat. I remember thinking I would let both of the twins eat ice cream and cake all day if they would just eat SOMETHING! Prayers to you and Jack on his feeding journey.

Angie said...

Jessi, I pray that day comes sooner than you think. Your patience and optimism is so admirable. Im really learning so much from you this week. :)

Jord said...

THANK YOU JESSI! Right now we are having bottle issues and tubes are all I can think of. I go to sleep with tears because of the thought of it, but you are making things seems a little easier.

Angela Jacobsen said...

Wow after raising a micro preemie for three years I had never heard of an oral aversion diagnosis. I stumbled upon this site after looking up dysphagia.

I feel like an idiot for not knowing more about my own child. I can honestly say it is so easy to get lost in all of this.

Nim was born at 22 weeks and 6 days. She spent 3 months on a ventilator with a feeding tube. Her oral aversion didn't present itself entirely until she was a toddler.

She recently had T&A done for her severe sleep apnea and it has obviously made her aversion much worse. We had to have the surgery though. She had up to 44 occurances and hour.

Angela Jacobsen said...

Why isn't there more information about oral trauma or aversions coming from the NICU upon discharge? That's what I want to know. We didn't get any information about how almost all babies born under 34 weeks get apnea or what to do about oral trauma.

We didn't know what to expect once she got older and trying to get a diagnosis or even someone to believe me has been nearly impossible. I have frequently been looped in with mom's who are just paranoid and over reacting to the normal things that babies do. Hardly anyone believes me when I claim that Nim has a genuine problem.

Nim was even seen by two therapists and not once did oral aversion diagnosis come up and nothing was done to address it. Her supposed speech therapist didn't want to attempt oral therapy because she felt it would be too traumatizing.
Hello! Isn't that why we are here???

I'm sick of medical professionsals who specialize in feeding issues not knowing what they are doing. With as common as preemies or even term babies being on ventilators or feeding tubes are these days you would think the world of therapy would catch up.