Tag Archives: NG Tube

3 Years and Thriving!

23 Aug

It’s almost unimaginable to think that 3 years ago today I joined the blogging world. What’s even more incredible is how far not only my little Ladybug has come but how far I have come.  3 years ago I was struggling with the biggest fear of all – possibly losing my baby girl. Ladybug was so fragile and so sick, all I wanted was a little a peace of mind. I tend to keep my emotions inside until I can comprehend and make sense of everything, but I was becoming so overwhelmed. I knew I needed an outlet and it was on August 23, 2010 I found mine. Beginnings. 

Today for the first time since Ladybugs Mic-Key G-Tube was put in, it came out.  The nurse brought Ladybug to me in one arm and the Mic-Key in the other. The inflatable balloon portion was still inflated. All that went through my mind was I can’t let the hole close up. I went into super mom mode grabbed Ladybug, grabbed a spare tube set, took off her dress and saw for the first time this teeny tiny, itty bitty hole where the tube should be. I had a dear friend whose daughter also has a Mic-Key briefly talk about how she has had to put a new tube in at the craziest of times so I tried to remember what to do. I picked up the shiny new Mic-Key and after a little bit of wiggling I popped it right back into the hole, then inflated the balloon with sterile water to hopefully keep this sucker in its place.

After all was said and done and many cuddles were given I looked down at the old tube still inflated and my heart broke. It must have hurt so much, but my little Ladybug calmed as soon as I began to put the new tube in.

3 years ago I never could have imagined changing a G-Tube let alone changing one by myself.  At that point I was still grasping bolus feeds with a 60CC syringe through her NG tube and we were months away from getting her CDG diagnosis.

Ladybug has been doing quite well and will be starting school part-time this September. The time has flown by and I am ever so excited to see what new adventures the next 3 years will bring. I’m sure by then I’ll be able to change a Mic-Key tube with my eyes closed, one hand behind my back, and balancing on one leg.

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Feeding Tube Awareness Week

9 Feb

This coming week which is February 10-16th, 2013 is

FEEDING TUBE AWARENESS WEEK!

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Feeding Tube Awareness Week was first launched in February 2011 By the Feeding Tube Awareness Foundation.

Each year the week focuses on a few topic areas designed to give parents, caregivers and tube feeders the opportunity to share their experiences with tube feeding with friends and family through social networking sites, blogs, viral and traditional media. Increasingly, parents and siblings have been using Awareness Week to give presentations in their children’s classrooms.

Long before the CDG diagnosis came to light, Ladybug was diagnosed with failure to thrive. Failure to thrive (FTT) is a term given to infants and children who do not meet the growth rate that his or her peers meet. Yes, it is a bit of a generic description but one that we dealt with for quite a while. Basically Ladybug was showing signs of severe reflux or GERD(Gastroesophageal Reflux Disease), and was refusing to eat anything. It was at 1.5 months that Ladybugs first feeding tube was put in.  The lovely NG Tube (Naso Gastric) This tube runs directly from the nose to the stomach.

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What started as a quick fix to help her gain some weight became an everyday part of our lives.  The NG tube truly was a lifesaver for Ladybug, and for the first few months she didn’t bother with it.  That is until she learned it only took a split second to pull it out. It didn’t matter how we taped it, what type of tape we used, or even how much tape we used, those teeny tiny fingers always managed to pull that tube out. After numerous trips to the ER to have the tube put back in, we began to discuss with the doctors about a G-Tube.  The G-Tube (Gastric Tube) is surgically placed into the stomach. Seeing as Ladybug still wasn’t eating orally and was beginning to throw up often it was the obvious next step.

The G-Tube was inserted in October 2010. Ironically this occurred the same month she had a GI bleed, bowel resection, port insertion and the CDG diagnosis.  October 2010 was a very emotional month to say the least.

Even though Ladybug is slowly starting to try food orally, sippy cup with water, Breton Crackers, squash and chocolate, the G-Tube is her sole source of nutrition. Thanks to the G-Tube and an amazing dietician, she is also steadily gaining weight according to her very own growth curve. The other great thing about Ladybug being a “Tubie” is that her best friend has one as well.  “Bean” the other Diva of 3C at Mac Kids is always excited to see Ladybug and compare their identical feeding tube clamps.

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Another tubie mom couldn’t have said it better when she posted that she would rather questions about our kiddies tubes than stares.  I truly LOVE when little kids look at Ladybugs feeding tube attached to a little backpack inquisitively.  I can only imagine what their honest minds are thinking.  I always give them a smile if only to let them know it’s ok to be curious.  The teacher in me can’t wait for a chance to explain what it is not only to the kids but also the parents.  If I can pass on anything it’s for adults to remember the inquisitive little child within. Don’t ever be afraid to ask questions – the majority of people are more than happy to answer them.

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Feeding Tubes are NOT for losing weight!

16 May

When I first heard about people using a feeding tube as a fast way to lose weight my first reaction was complete and utter disgust, followed immediately by outrage. My ladybug has been tube fed her entire life. It started off as an NG tube which goes through her nose into her tummy. It was so difficult to see my daughter have to go through this, however she had no choice. If it wasn’t for the NG tube she wouldn’t have been able to get the nutrients needed to survive.

During Ladybugs most recent hospital visit, the student nurses were in our room chatting about it being the last day of their placement. While our student nurse was letting air bubbles out of my daughters g-tube, the other student nurse looked to me and said. “Man I wish I had a feeding tube, life would be so much easier, and think of the weight I could lose.” She had left the room immediately after, when all I could do is stare at her with the are you freaking kidding me look. I then wrote down what she said in Ladybugs medical journal as I was so in awe that someone could be so ignorant, so shallow, and so daft!

Not even a couple of weeks after we returned home I received a message from another mom on a Feeding Tube Awareness group I belong to. It was about a segment that Kathy Lee and Hoda did on The Today Show regarding a new weight loss fad known as the K-E Diet. It is where the woman is fed through her nose for 10 days so she can lose weight for upcoming events like weddings. Kathie Lee Gifford and Hoda Kotb laughed while they referred to the weight loss trend as “almost kind of sick” and “ingenious.” (You can watch the clip here; segment starts at 5:10.)

“That tube has to stay down, there could be some infections who knows what the other problems are with it, but you’re carrying around a bag all the time. And if it gets knocked out, what if you fall down,” Hoda says laughing.

There was outrage across all the feeding tube groups not only over this new fad diet but over the fact that Kathy Lee and Hoda were in essence joking about feeding tubes.  A lot of people were upset that they were making light of the situation and should have at least mentioned actual people who rely on feeding tubes everyday of their lives in order to survive. The latter I completely agree with. From the little tidbit I’ve seen I feel that it’s definitely not a show that would take the time to research feeding tubes and their actual use, which is most likely why they found the whole idea comical. I do feel that the fad diet is wrong in so many ways. What ever happened to exercising and watching what you eat? I couldn’t possibly fathom a reason as to why a woman would put herself through this other than vanity. I also wonder how the doctor that is doing this can be so unethical.

It is a truly sad statement of our society today when a person would resort to inserting a feeding tube through their nose to lose weight.

A feeding tube enabled my daughter along with so many others to live. Its actual use should not be taken for granted in order to shed a few pounds and fit into ones wedding gown.

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