My Family

My Family

Monday, February 6, 2017

Feeding Tube Awareness 2017

During this week in February we take time to bring awareness to the fact that are multiple ways of being fed.  My daughter will be coming up on her third year Tube-iversay in a few weeks as well. The decision to place a tube in my child not only gave her the ability to grow and thrive, but also gave her something so much more.  It gave her freedom from pressure and a chance to make her own choices about how she eats.  Let me take you back and share our journey. 

When she first came home at nine months old Cary Lynn was bottle fed.  Sure she was a little slower and needed to eat more often but she enjoyed her bottles.  I loved watching her smack her lips and grunt as she slurped.  

Then we ended up in the hospital.  She was pretty sick.  While we were there I met my first feeding therapist.  She immediately didn't like the bottle I was using.  Said it was too hard for Cary Lynn and took too long.  She found us new bottles.  Therapeutic bottles.  O.K. that wasn't horrible.  Cary Lynn adjusted and soon ate with her new bottles.  Then we met with a new G.I. who complained she was too small.  

"Are you ready for a G-Tube and Nissen?"   Ummmm no, she eats.  He wasn't thrilled but said O.K. you need to go to nutrition and feeding clinic.  So I took her, therapeutic bottles and all and we went to feeding clinic.  Because that was what the Drs. said and frankly I was worried about her.  We had only had her home for a little while and we seemed to be making frequent pilgrimages to the hospital. We also had a tube that went from her nose down to her stomach (an NG tube).  She kept pulling it out and chewing it up.  Gross.    

So we went and the people who assessed us were nice.  Cary Lynn ate and threw up everything on the nurse.  Up till that point there was a waiting list.  After she barfed everywhere they had a magic space open up.  We started next week.  

I was so excited!  She was going to eat!  I was going to put some chunk on her!!!  Yay!!  I tried to get Cary Lynn excited too.  I told her about how much fun it would be.  There would be bubbles, stuffed animals and she would eat.  She just grunted and went back to her bottle.  

When we started the first thing they did was tell me the bottle had to go.  I protested, saying that she loved it.  They gave me a bottle that hair dressers use to put coloring in with food safe tubing.  It looked like a hamster bottle.  I told them that.  They didn't like it much.  

They showed me how to squirt it in her mouth.  Cary Lynn didn't like it.  She whimpered for her bottle.  We managed.  Then we went home and I fed her bottles. 

Next week she did better.  I rejoiced, went home and threw her bottles away.  That night after four hours of crying I dug one out that I hid just in case.  I told the therapists that she wasn't ready.  They said she could and I was being difficult.  So they kept working with her.  She finally took the hamster bottle.  We were finally able to throw away her bottles.  

All during that time her weight see sawed.  It was up and down.  There was a lot of pressure for a tube but she was still eating.  Every Dr. only talked about the tube.  But she ate.  And she was happy eating.  

Then feeding clinic wanted to start on food.  They showed me how to make purees that had more calories.  It was fun.  I learned quickly.  Cary Lynn didn't get the memo.  She balked.  Some days were good days.  We had to have lots of meals.  She had to eat about eight times a day.  She also started refusing.  

Our feeding program is behavior based.  Eat a bite get TV.  Eat a bite get bubbles.  Or music or a sticker.  The problem was and is Cary Lynn has visual impairments.  So that stuff didn't mean a lot to her.  She started to wave her hands in front of her face and put them over her mouth.  The feeding therapist took her and tied her arms down.  That didn't go over well with me or Cary Lynn.  

After I threatened to call CPS she was untied.  Cary Lynn kept her arms down but every bite of food was spit out into the therapist's face.  Cary Lynn was shaking violently and turing purple.  We went home early.  

The next week we were getting ready to go back.  I was telling Cary Lynn where we were going when I heard her make a noise.  I leaned over to look at her.  Her lips were shaking, her eyes were wide with fear.  Her body trembled uncontrollably.  My kid was scared.  

Eating was no longer a fun thing for her.  She had begun to dread it.  Every meal was a nightmare. The therapy that was supposed to help her robbed her instead.  I had hoped for so long that some magical cosmic event there would get her to eat.  In following what I wanted I wrecked what should have been a beautiful and organic experience. We called out.  

The next day I went to her G.I. doctor and told him we were ready for a tube.  Three weeks later she had a tube.  After she had a tube we were "discharged" from feeding clinic because she "never had to eat again orally".  Frankly, I will never take her back there again.  What they did was wrong and I would be wrong to allow it to happen again.  

Now my daughter eats with a g-tube.  As much as I fought it that tube is one of the best things I've ever done.  She's growing and gaining.  She also has started eating orally again.  Because she WANTS to, not because she HAS to.  Her G-Tube has given her freedom in that department and she can approach food on her own terms.  We don't stress anymore.  Cary Lynn's happiness over discovering frosting, chocolate, and bean burritos all over again have made waiting for her to be ready all worth it.  The G-Tube has allowed us that privilege.  And for that we are grateful.  Happy Feeding Tube Awareness week!

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