Tuesday, February 7, 2012

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!!

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