Sunday, December 9, 2012

Tube Weaning Update....

We had our appt with GI. According to their scale she lost 2 pounds (1. this is not uncommon when weaning from a feeding tube, but 2.) I am positive that GI's scale is so wrong. She was weighed the week before at the Ped office, and I weighed her on our home scale that same day for comparison. I also weighed her on our home scale the day of her GI appt too. She def didn't loose 2 pounds.), either way... GI's response to this was "What would you like us to do about her weight loss?" My response was, "Nothing. I won't go back to tube feeding her at this point."

I was SHOCKED when GI was "ok" with that. I really thought she would fight me on it a lot more. Instead we talked about Addison's daily diet and she offered me some other options as far as liquids that might be appealing to Addison, and things I could add to her foods to boost categories. She wanted to be sure that I understood that she needed to see Addison gain weight for three consecutive months without any intake via her G-tube, in order to give consent for it to be removed. I get that, and we are in no rush to actually (pardon the pun) pull the plug. I'd like to see Addison get through this winter/cold and flu season without a tube feeding first. (It's highly common for G-tube babies to stop eating or drinking when they get a cold etc, especially at first.) If she can make it through this without needing additional support then yes I am absolutely all for getting rid of it 100%, after all that is what we have been working so very hard towards, I am just not in a hurry. I'd hate to take it out and then see her need to have it put back in later. In other words, we just aren't there yet, but we are close.

One of the toughest things about this process has been calorie tracking and watching her liquid intake vs. wet diapers. For starters, she certainly isn't taking in the volume of liquid she was through her G-tube (again this is normal) so I am not used to the difference in her output. She still has wet diapers within what is considered normal (every 6 hours or less), but certainly not as wet or as frequent as they once were. And to be honest, it makes me crazy and wonder if she is getting "enough" (she is, I've asked). She "drinks" less then what is "ideal" so to compensate we are offering her purees... (Did you know?...purees/yogurt/other "wet" food count as liquid intake (ounce for ounce) and help prevent dehydration.) I worried myself sick until GI and the Ped both reassured me on this. This also means that we are going to have to work extra hard at increasing what she drinks as she moves away from puree food.

I've noticed that we are falling into a pattern where she eats REALLY REALLY REALLY well for a day or two and then just sort of picks a little for a day or so. Also, normal toddler behavior, but golly doesn't she understand and know that it's important that she packs on the pounds right now? The truth...she doesn't understand. In fact, she is just beginning to understand and learn what hunger feels like and how to satisfy her hunger. I can say this though... she is beginning to behave more like what I'd expect a toddler to behave like as far as food goes, or should I say, she behaves more like Blake. (Ya know my kid who eats anything and everything...Yeah now he is becoming picky, which seems to be age appropriate.)

She and I are learning together. It's our new adventure. Moving away from one (the tube) into another (the world of "real" food and "real" meals.) Not going to lie. Some of these days can be frustrating, but the reward that comes with it is incredible. She is learning to communicate her needs with me, she's gained three important new words "Milk", "Affle" (waffle) and "O-grrr" (yogurt). Which in turn means she can request what she'd like to eat, and therefor she is more willing to eat what she is given, a win for both of us.

But this has been no cake walk that is for sure. I cannot tell you the lengths I go through to get her to eat sometimes. Or how many times I have had to distract her with my cell phone and then thought "Just how much food is on my phone? Should I weight it?" <--- Not kidding. I really have thought about it. For some time, I was the only one who could feed her orally. Why you ask? Because I am a control freak. Because, there is a method to our madness here. Because I am her primary caregiver, I know the tricks of the trade to make things happen. It's a comfort thing between her and I and it's about trust. I know how much is too much on the spoon and when to take her cup away. Yes I could teach someone else I suppose, but it's hard to cram all that into one session and expect a person to remember when they aren't doing it on a daily basis. And we were actually discouraged from doing that by her OT, initially. Until she really became comfortable with eating and could manage things on her own a little bit better, and because what worked today wouldn't necessarily work tomorrow.

That part is getting better, to the point where I can give Jake a chance to feed her and allow myself a small break. And it's actually becoming beneficial to both Addison and Jake. They have now built that trust. (For the record, he has always been able to/and would tube feed her.) He has done an amazing job learning "how to feed Addison". I am very proud of him for that. Now I can go out to the store and leave them home with Jake and know that he can safely feed her.

We are still struggling with somethings, like her eating in a public place or with a large crowd (too many distractions). But our families are also learning, when we gather around the table for dinner, how to react and to keep things as calm as can be. Eventually we'll get to a point where she'll be able to manage her distractions, for now we just limit them. No this doesn't mean we don't ever go out eat. It just means we only do it on occasion and choose places that aren't as crowded, etc. and work up to it.

I am still struggling with giving her some space to have the control she needs while meeting her calorie needs. Our goal is to keep feeding as pleasant as possible for her and let her guide us, while still thriving. It's tough, but we are doing it. I haven't yet found the "perfect" solution. She eats a lot of meals in front of the tv, and sips on her cup throughout the day vs. drinking a full cup at once. Her Nissin Fundo impacts her volume and what she can tolerate which makes it tougher too. It's for certain a work in progress, but for today... My child is eating and thriving. I am choosing to focus on that while we move forward.

Everyday that she doesn't have a tube feeding is one step closer to our goal. I look forward to not having to try and count each calorie she takes in (and try and figure out just how many calories are in each meal I cook, or having to buy prepackaged meals so I know exactly what she is getting).

Please continue to pray for our sanity, and growth at this time. And if you notice that I myself have gained weight, blame Addison. It is for her benefit that I now have to cook fattier foods and I am way to lazy to make low calorie versions for Jake and myself nor do I have the patience.

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