Friday, October 26, 2012

Who's Hungry?

Eating and drinking are two things that I always took for granted.  I had no idea that so many children, and adults, are unable to eat and drink by mouth and require a feeding tube for numerous reasons.  When Sophia was born she had a blockage where her stomach and her intestines came together, called a duodenal atresia.  Because of this, she was unable to to eat or drink anything for the first 3-4 days because there would be no where for the food to go after it went into her belly.  Sophia also had a very poor suck and swallow, due to low tone, making it difficult for her to take anything by mouth.  Also because of her heart defect, Sophia tired easily and had very little interest in feeding.  Which is how we ended up with a feeding tube.

Tube feeding is a special liquid food mixture given through a tube in the stomach or small intestine.  It provides nutrition when you are not able to swallow or digest regular food.  Tube feeding can be either temporary or permanent.  Some people need tube feedings to prevent undernourishment while they are getting better.  Other people may need to have tube feedings for the rest of their lives.     

Some of the reasons why a baby or an adult may need to have a feeding tube are:
 * If they have a weak, or uncoordinated, sucking and swallowing pattern which cannot tolerate oral feedings.
* Some people have such severe respiratory or cardiac problems that they do not have the energy to suck and swallow.
* If a person aspirates, where you draw food or liquid into the lungs rather than into the esophagus.
* Lack of neurological coordination required to organize the collection and movement of food in the mouth, and to propel it to the back of the tongue and the pharynx for swallowing.
* Severe gastrointestinal difficulties.
* If a person is so ill that they are too sick to eat.

In order for someone to get the right amount of calories needed in a day, there are also different ways to feed. 
* A continuous feed: a small amount of formula is given without interruption over 12-24 hours.  When Sophia first came home from the hospital she was on a continuous feed for the most part.  She had such a hard time keeping her food down, and emptying her stomach fast enough, that we would have to feed her VERY slowly for 2 1/2 hours, then take her off the feeding pump for 1/2 hour to "rest", then we would start her feeding all over again for another 2 1/2 hours.  Let's just say that it was hard to do much of anything when she was feeding, all. the. time!
* A intermittent feeding: the total amount of formula needed in a day is divided into 3 to 6 feedings.  Each feeding is then given over 60 -90 minutes.  We slowly worked our way up to this, by adding a little more volume to each feed, as she tolerated it, and knocking off some time on the overall feed.  So we would work our way down from 2 1/2 hour feeds to maybe 2 hours and 15 minute feeds, then down to 2 hour feeds and so on, as Sophia tolerated the faster pace of formula going into her tummy.
* Bolus feeding: a large amount of formula is given by syringe in 15- 30 minutes.  It seemed like a miracle when we made it to Sophia tolerating a tube feeding in 30 minutes or less!  We were able to do so much more stuff, with her not being hooked up to a feeding pump for the majority of the day!

Tubes can be inserted in several places along the gastrointestinal tract.
* Nasogastric placement (NG tube): the tube is put through the nose and down into the stomach or small intestine.  This does not require surgery.  Many people find the tube uncomfortable, and it is easy to dislodge accidentally.  These tubes may be used when tube feeding is needed for only a short time, days or weeks.  This was the first type of tube that Sophia had.  I HATED it!  We had to place the tube down her nose, and check the placement of the tube before using it, by using a stethoscope.  Every week we had to pull the tube and replace it down the opposite nostril.  It was no fun for Randy, myself, and especially for Sophia I'm sure.   
* Percutaneous endoscopic gastrostomy (PEG or G tube): a small cut is made in the skin of the abdominal wall.  The feeding tube is placed in the stomach and a balloon or cap in the stomach hold the tube in place.  These tubes are placed when tube feeding is needed for months or more.  This is what Sophia has right now.  She had a PEG tube placed at 4 months old, when we realized that tube feedings were going to be a huge part of our lives for awhile, and we were done messing with the NG tube!  It's very simply to use and easy to replace, should the "button" happen to fall out.  You just simply place a new tube in the hole and fill up the balloon with water and it's that simply :)  Unless the tube comes out without you knowing and the surgical hole starts closing up, which it can do if it is left without anything in it for even an hour.  Then things get complicated :/
* Jejunostomy (J tube): the tube to be used for feeding is surgically placed in the middle section of the small intestine called the jejunum.  These tubes are placed when tube feeding is needed for a long time and can also be placed to help with excessive spitting up.  Sohia had a GJ tube (we could feed either into her stomach or small intestine) placed about 3 months after her PEG tube was put in, she was around 7 months old.  She was having a very difficult time keeping her feedings down and was spitting up just about everything that I was trying to put in her.  So we put a GJ tube in and instead of feeding her into her stomach, where she could spit all the feeding back up, we fed her into her jejunum, part of her small intestine, and it was almost impossible for her to spit up the feeding that way.  In turn, helping her gain weight and grow. 

Feeding has definitely been our biggest hurdle.  We have struggled with eating and drinking since day 1 and there were a lot of days when I just couldn't imagine Sophia ever eating or drinking by mouth.  It was the most frustrating thing we dealt with for the first 3 years.  BUT, we made it!!!  On May 23, 2012 I stopped Sophia's tube feedings all together.  We had been working HARD, with Sophia's speech therapist to get her to eat and eat more and more and more, and something just clicked I think.  I counted her calories and made sure that her weight was staying steady and we went for it.  She just took off each day eating a little more and a little more, and now she eats more than her big sister!  Some of her FAVORITE things are: bacon, chips (especially Doritos), McDonalds French Fries, goldfish, popcorn and ice cream.  Yeah, she's definitely a salty kind of girl :)  Of course she eats so much more than all of this, but these are some of her favs.  Drinking on the other hand took a little longer to come around, and it's still something that needs work.  Sophia will ONLY drink water.  No juice, no milk, nothing.  Just water.  Her intake of water though is getting better and better.  She is drinking more daily and I haven't had to use her feeding tube, not even to flush her with water to keep her hydrated, for the past two months!  Unless you have traveled down this road, you can't imagine how HUGE this is, but even typing this, it brings tears to my eyes to know that we conquered this, with so much help from many people, but Sophia is now an oral eater!!!!  Of course we aren't for sure when the tube will come out yet.  We actually have an appointment on Monday, October 29th with her Developmental Pediatrician to find out what she thinks about her progress and find out what the next step is.  We are so happy for the progress that Sophia has made, but now we had to lock up our pantry because we just can't keep her hungry butt out of it!!! :) 

This post was important to me to write because I never knew anything about feeding tubes before Miss Sophia.  (I must say, I've obviously led a very sheltered life with my lack of knowledge on a lot of things :/ but I'm learning!)  Anyway, I wasn't necessarily embarrased by the feeding tube, I mean heck, it saved Sophia's life by having it, but I hated to have to feed her out in public.  I hated the stares from people.  It made me feel like me feeding my baby was weird, but to me it wasn't weird, it was normal and just the way things were.  I know that people stared because they were curious and probably had no idea what or why I was doing what I was doing.  But the next time that you come across someone using a feeding tube, just know that there is a reason why they need to eat that way, and it's just another part of life.  Happy Eating :)

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