UPDATE: On August 15, 2013, M got his g-tube removed! He may be a former tubie now, but it’s a part of his life that we will always remember. He will know about his early struggles and how brave he was at such a young age. We will raise him to be proud of all of his scars so he knows that they are symbols of his bravery and strength.

Here is his tubie story:

My son is a tubie. This means he has a feeding tube to help him get his daily calories and nutrition. His journey is not over but this his story so far.

Since M had his open heart surgery (OHS) at just 6 days old, he was not allowed to eat anything (i.e., breastfeed) before his surgery. He was frequently caught sucking on his intubation tube. Once his surgery was done they had to check his suck, swallow, breath reflexes before I was allowed to try nursing. Once all tests were said and done it was determined that he was an aspiration (inhaling) risk with thin liquids due to left vocal cord and hemidiaphragm paralysis from the OHS. They later figured out that he had moderate-severe acid reflux, a concern with him being an aspiration risk due to the frequency of vomiting in reflux babies.

Early on in his 6 week hospital stay he was given an nasogastric feeding tube (NG tube…up his nose and into his stomach basically). When they determined he was an aspiration risk and had reflux they changed it to a nasoduodenal feeding tube (ND tube, went below the stomach to prevent issues during tube feeds which were thin liquids). Regardless of tubage we continued to attempt bottle feeds. When he was at duPont hospital in Delaware he was doing pretty good, considering all he had been through. He was taking about an ounce of thickened breastmilk (thickened to be honey thick with oatmeal) every 2 hours. When he got transferred back to PA all went downhill and he started taking less and less by mouth. It was crazy frustrating and we felt defeated. I was able to dry nurse him though (pump first and then nurse), he did fantastic and I was hopeful that he’d be able to nurse once we got past aspiration issues.

A week before his discharge from the PA hospital he underwent another surgery to have a Nissen Fundoplication to “resolve” reflux issues. This was also the point when he received a gtube rather than a nasal feeding tube. His specific gtube was a MIC-KEY Button, so it was under his shirt and we didn’t have to worry about him pulling a nasal feeding tube out (however, we’ve had issues with the gtube as most tubie families do).

The Nissen caused us a lot of issues for several months. Until M was about 8 months old he was retching (dry heaves since the Nissen does not allow for vomiting or burping) after almost every tube feed and it would last sometimes up to an hour after a feed. When I got the go ahead to nurse I started out slow with M since he was not used to taking much by mouth and flow was an issue. At one point he was doing really well and I was really hopeful that nursing would work out and we’d be able to decrease his tube feeds. One problem was we didn’t know how much he was taking while nursing because I couldn’t measure it so we didn’t know how much to decrease from the tube feed that would follow. The main problem though was that despite his nursing, the feeding team (that we later switched from) continued to have us increase tube feeds. Well, M stopped nursing. He would pitch a fit, cry, scream…I would pitch a fit, cry, scream. We were both miserable. So, I took a break, knowing that in my emotional state he was not going to be successful…the break never ended.

Fast forward, we switched to the Hershey Feeding Clinic and things started to look up. They got GI involved to help us with M’s retching issues. We insisted that he’d never make progress with oral feeds when he was getting “sick” after every tube feed. I wouldn’t want to eat if I threw up 5 times a day…why would he? So, Hershey decreased his milk volume (he was still getting breastmilk, I pumped, he got it through the tube) and increased the calorie concentration (mixed in formula to add calories). We finally started to see things improve with his retching. At 6 months we introduced solids the Baby Led Weaning way, by 8 months he was chewing and swallowing. By 13 months he was eating regular meals. Now, he eats everything and anything. Hershey has been fantastic, they work with us and have allowed us to take control and own M’s feeding.

So, that is, in a very small nutshell, the background of M’s feeding tube and why he has a feeding tube. He continues to make huge gains and we’re hopeful that by the time he’s 2 he’ll be tube free or at least tube feed free. To get more information on how we feed M through his tube, here’s a blog post I wrote awhile back about his bolus feeds. We no longer do a nighttime continuous feed and his daytime tube feeds continue to get less and less and his oral intake is that of a horse!

As always, if you have any questions, please ask. I am not afraid to answer questions, we’re not ashamed of his tube, we’re more than willing to talk about it, give information, and raise awareness.

Helpful Links:

MIC-KEY Button

AMT Mini One Button

Nissen Fundoplication

Bolus Tube Feed Information

EnteraLite Infinity Feeding Pump (the pump we used for M’s nighttime continuous feeds and in the beginning we used the pump for his bolus feeds that would last 30 minutes).

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