Feeding Tube Awareness among Friends and Family

I've mentioned before that the idea of a feeding tube was really scary at first. In fact, we did everything to avoid it, because in my mind it was the wrong thing. But then I learned that it's not so scary, and when they put the NG tube in Sadie's nose and she started sleeping, and she didn't scream all day, I realized that I was so thankful for tube feeding. It was in fact the right thing!

I think it's kind of been the same for my friends and family.

I've realized throughout my 2 years with Sadie that my attitude about something (regarding her) really effects how other people see it. Especially if it's something unknown like a feeding tube. So, if I approach surgery and a feeding tube with bravery and I get excited about how it's going to change our life for the better, my friends and family pick up on that and they have the same attitude...for the most part.

Mostly they have a lot of questions, and they ask, because they know that I don't have a problem telling them all about it!

And so we have a feeding tube, and my friends and family watch me feed Sadie. And they've even done it themselves. Sometimes even, they've said they wished their kids had one!! It's funny how a little awareness about something new and different can change your whole perspective

A day in the life of a tubie

Recently we started blenderizing Sadie's food. So, this might be a foreign vocabulary word to you... but honestly it makes total sense. We put a bunch of food in the blender and liquify it so that it can go through Sadie's tube. I've always thought that giving her formula was weird. But it's been reiterated that the formula is "complete nutrition" and I shouldn't deviate from it. Really? Define "complete" please?

Since Brian and I have really been trying to eat real foods (as opposed to processed foods) it's been killing me that we still give Sadie this chemically balanced nutrition through her tube.

Until now.

Sadie got a cold right before her birthday. Remember that craptastic birthday we celebrated? She's still struggling with the residual phlegm that a cold leaves behind. You know when you're feeling better, but you're still blowing your nose and coughing stuff up? The thing is, she has a hard time managing it. So, I did what my mom taught me, I took her off dairy...in efforts to decrease the mucus and help her breathe, help her sleep, keep her from gagging and puking, etc.

Which led us to blenderizing her food. (Because her formula is milk-based)

We don't have a Vitamix...yet. I have been saving up the money I make selling my Button Beauties, and we've been working on getting letters from the feeding therapist and Dr. Wendy so we can qualify for a medical discount with Vitamix. We're just about ready to order, and I'm so excited, because, even though our blender works okay for Sadie's formula, I know that the Vitamix will work so much better.

So, our routine has just changed...it's always changing. I am somewhat obsessed about Sadie's feeding schedule, I want to make sure she's getting enough calories as well as liquid. She can't, after all, just tell me when she's hungry. And I can't just give her a banana when she is. And if we're tube feeding she doesn't get a say in when she's "done"... it's a very delicate balance.

And I'm always pushing the line because I hate hooking her up to the pump at night. (which only happens if she hasn't had enough during the day)

In the mornings I blend. This morning I juiced some apples and carrots and then grabbed some citrus from outside and juiced that too. I found this awesome basic recipe for blenderizing for a 2-year old, and so I have it on a sticky note on my fridge. I have some pre-grinded grains (this morning I used barley and oats) and I added those to the juice. Then I added some almond milk, some coconut oil, and some salt. Pretty nutritious, right? The thing is, what I blend for her is not enough nutrition to sustain her for the day. I'm counting on her eating some food by mouth.

I usually have a schedule in my head when I'll feed Sadie throughout the day, depending on our schedule. It's usually about 150 mL (5 ounces) every 2 hours. And I adjust that accordingly. I write down when I feed her and how much and at the end of the day, if she needs more liquid, I hook her up at night. If she was on formula, I could add that at night to her feed for more calories, but right now our blender is unable to blend well enough to put her food through the pump...I'm hoping this changes when we get our Vitamix.

Here's what happened today:

7:30 - Meds and 25mL water (while she was still sleeping)

8:30 - 100mL blended formula (BF) and 50mL water (again while sleeping...thank you tubie!!)

10:45 - 60mL BF and 40mL water (in the car just before therapy)

1:00 - 100mL BF and 50mL water (just after therapy)

2:00 - benadryl and advil and 75mL water

2:15 - she puked EVERYTHING up ...without warning

3:00 - 60mL BF and 40mL water

5:00 - 60mL BF and 40mL water

6:15 - 4.5oz of pureed baby food (she ate this like a champ, she must have been hungry. I'm so thankful that she understands hunger and that eating takes care of that!)

7:00 - Meds and 50mL water

This is only 750mL of liquid (and probably less because she puked everything up), and definitely not enough calories. I didn't work that hard at keeping her hydrated because I knew she'd be hooked up to water tonight. She'll probably get just over 400mL of water overnight.

I'm constantly thinking about how much Sadie's last feed was, how long ago it was, and when I should give her the next one. Everytime I feed her I wonder if she's had enough, if she's had too much. I don't know if she's still hungry or if she's going to throw up because I over-filled her. It's much easier when she eats by mouth...but it takes 5 times as long and a LOT more patience!!

I'm so thankful for the tube in so many ways, Sadie is doing so well with it. But it definitely takes some getting used to scheduling-wise!! And blenderizing only adds to the confusion. But we're getting it, it's like a puzzle, a challenge, to everyday get enough calories and liquid in Sadie without any puke!!

Why does Sadie have a feeding tube?

Little kids always want to know: "why can't she eat?" They are so innocent and pure, but they still understand that eating is important and they want to know why Sadie needs to have food put in her tummy with a tube. I usually tell them that Sadie has a hard time eating the way they do, with her mouth, so sometimes we have to give her food right into her tummy so that she gets enough to grow big and strong.

The fact is, I'm not really sure why Sadie needs a feeding tube. I mean, I understand that her CP causes her to have an uncoordinated swallow and that she doesn't know how to chew, and that she aspirates liquids that are too thin...but I don't understand why. She nursed just fine, and we seemed right on track to start eating food and transitioning to a sippy cup. And then we seemed to hit a wall.

All of the sudden she started coughing and choking when we'd have her drink. She started puking everything up right after she ate. And eating started to become so stressful for everyone. Especially Sadie. It was like her brain could handle it when she was little, because there wasn't much else to think about, but as she got bigger it was trying to learn so much more that swallowing kind of fell by the wayside.

Since Sadie got her feeding tube, I've learned that it's pretty common for children with CP to have a feeding tube, but that those who are less severe eventually grow out of it. Sadie has a feeding therapist who enjoys eating and wants all her clients to know the enjoyment of flavors and textures in their mouths, and so she works with Sadie so that someday we can rejoice in having the surgery to remove the tube and close up the stoma.

Sadie likes to eat by mouth. And I think someday she'll eat and drink well enough that we won't need the tube anymore. But she's only 2, and she has a long way to go in life and in eating.

Feeding Tube Awareness Week Kickoff

This week is designated Feeding Tube Awareness Week. The goal is to bring awareness to the many kids and adults who are tube fed. Tube feeding is an important part of our lives, and has made our lives so much easier. It's funny how quickly something like tube feeding can become so normal, when to so many people it's strange and unknown.

I used to think that a feeding tube was a horrible thing, and the thought that we might be going down that road toward one scared me and made me cry. But the truth hit me hard when I realized that it's not about me, it's about what's best for Sadie and what Sadie needs. And Sadie needed to be fed.

I didn't understand.

One morning at a Foundation for Blind Children parent meeting I started to talking to another mom that I sort of knew. I asked if her daughter had a feeding tube. She said yes and proceeded to demystify the whole thing for me. She showed me how it works, talked about how easy it is to give her medicine, and explained to me how it just made their lives so much easier. By the time Sadie had her NG tube inserted (that was the tube she had in her nose that we had to tape to her face) and we realized what a good thing this was for our family, I was eager to take the next step and have the surgery. The fear had turned to excitement.

Now I am locked into this society of people with feeding tubes, or with children with feeding tubes. I never knew it was so common. I never realized all the different issues that can cause someone to need a feeding tube. And I don't think our society recognizes it well enough either. It's like the breastfeeding issue. Someone who is tube fed feels like they need to conceal themselves when they're being fed, because it's weird and might be offensive. We shouldn't be made to feel that way, after all, I don't ask the fat guy at Costco who's stuffing his face with over-processed chemical food to go eat in the car because it's offensive, right?

But just like when I was breastfeeding Sadie, when I tube feed her in public, I also choose a place that is not real obvious, and I try not to bring attention to what's going on.

I think if more people better understood that a feeding tube is a gift of life for a child with special needs, then it wouldn't be so awkward or embarrassing or weird. I hope that if you know someone who is tube fed, or even if you don't, you take some time to ask questions. Learn more about it, and support those who use it.

Feeding Tube Awareness Foundation has a website. Check it out. There's even a video to celebrate awareness week and you can celebrate along with so many the beauty of those who use a tube!!