As part of Tube Feeding Awareness Week many parents are posting about their families’ experiences in the tube feeding world. It’s been wonderful to read them! The Tube Feeding Awareness website has a list of topics to cover so we can all be united in our posts; what a great idea!
Of course, I’m late and already not following the topics so much. Typical me, outside the box for it all, lol. Plus, Gia doesn’t have a tube anymore. Does that still make her a tube-fed kid? Or she just an “ex-tubie”? A year ago she still WAS a tubie and had just started to take a few ounces of a high-calorie drink! So I still want to participate even though we are not currently tube feeding …. So here it is.
Yesterday’s topic was to discuss why your child has (in our case, had) a tube. So why….hmm…… Gia had a feeding tube placed in her mouth soon after birth, perhaps it was placed in her mouth (instead of elsewhere) because she was initially on a little bit of oxygen (that first day is a little fuzzy for me-I’m blaming the morphine). At a day old, the tube was moved and placed in her nasal cavity, commonly referred to as a Nasal-Gastric (NG) tube. The reasons for keeping this NG tube were always a bit convoluted to me. For one thing, she clearly wasn’t taking enough milk. She would do pretty good at one feeding and at the next, 3-4 hours later, she would refuse and sometimes not even wake. It was thought she had a stomach emptying problem, which she did because quite a bit of milk was still in her stomach when it shouldn’t have been and she just couldn’t seem to digest the milk fast enough. Barium studies were done (both ‘up and down’, poor thing) there was worry about twisted bowels and other sorts of issues… but none of those, after further investigation, seemed to be true.
In the the end I was basically told her suck-swallow coordination was under-developed. The first mention of a “surgical feeding tube” was a few weeks into our NICU stay, I was told it was not safe for Gia to leave the hospital with an NG, too much work for the parents- plus if you don’t know what you are doing then the food can end up in the lungs instead of the stomach. This was obviously our hospital’s policy because I certainly know of many kids who live their lives with an NG tube and seem to be OK.
So in the end, she was simply diagnosed as “failure to thrive” and had surgery at 1.5 months to place a feeding tube. We started off with a PEG (basically a long tube into the stomach) and three months later we changed to a “button” (a shorter, much more convenient feeding tube).
I’ve written much more of our “Why” story on this blog, feel free to check the archives starting June 2009 when Gia was born!
And now the “What”……. What does a day look like with a tube fed kid? Gees, this is a hard one. At first we couldn’t even move or touch Gia without throwing up. She was on continuous feeds overnight and in the state we live, being on overnight continuous feeds qualifies you for a night a nurse because of the high risk of aspirating. So for a year we had nurses at night, which was great because Gia vomited A LOT and it was very comforting knowing someone could watch. During the day I spent my time pumping milk, try and bottle feed her a little, feed her through the tube (called a bolus feed), and going to doctor and therapy appointments. Seriously… that is all I did. I would pump several times a day, feed her, hold her so she wouldn’t vomit (which never seemed to help), and then do it again.
When she turned one we very slowly started to switch breast milk for a blenderized diet of whole foods. This did reduce the amount of vomiting, but that never really stopped until she was weaned form the tube. The time spent with that dreadful breast pump and giving her a bottle (to work on her oral skills) was replaced with making the diet and sitting her at the table to play with a spoon and purees.
After one year tube feeding became a bit more bearable, I bragged about how she had the healthiest diet of any 1 year old in Missoula. She looked and felt better with the “real” food too. Over time she was slowly able to tolerate a bit more blenderized diet, which was great. A typical day of feeding involved me offering her purees before every “meal” and usually her not eating. Then I would bolus though the tube. It definitely still took longer than feeding a typical child, but Gia is oh so not typical!
So that’s our story (well, more Gia’s 
). For more of my conflicted thoughts on feeding tubes read my latest blog post at Mamalode.com: It Begins With Awareness.
