Tuesday, February 7, 2012

Feeding Tube Awareness Week ..... Day 3

First I apologize for missing a day, however I have good reason. I've got a little boy who is not feeling so hot right now. Seems that maybe Mr. Blake just can't let his big sis steal all the spotlight. He's apparently got a bad respiratory cold or something going on. The Ped sent us home with steroids and a Nebulizer. We're not a full day in to the meds and he's finally starting to sound just alittle less wheezy, I am hoping he's better soon and it doesn't get worse. (Please send us some prayers that he is feeling better ASAP). I will admit he isn't letting it hold him down in the least either, he's acting like nothing is wrong besides his occasional whiny fit that doesn't last long. If it wasn't for the horrible noisy cough and breathing you'd never know...

Here's a picture of our little trooper hanging out while he gets his Nebulizer treatments...

I think it's starting to annoy him a little, but if it's just me and him around he tolerates it like a champ.


Now back to FTA...

Let me give you the inside scoop to what it's like "A Day in the life of a Tubie Mommy".

A typical (aka... no sick babies, no "distractions") kind of day begins at 7:00am for Ms. Addison. Usually, most days she is already awake, however she does like her sleep and there are days when I have to wake sleeping beauty (I know...who wakes a sleeping baby? But I pretty much have to in order to get all of her calories in her system within the day. She's a belly sleeper and I need to get to her belly to tube feed her.) After diaper changes for her and Mr. Blake, they both have a seat in their high chairs while I get their breakfast ready.

Once I've got their "food" ready, I usually feed Blake first because if not he'd have a meltdown by the time I fed Addison, and I also think it's good for her to see her brother eating via spoon or self feeding. Blake gets his usual, oatmeal and fruit. Then it's Addison's turn. She gets a tablespoon of the same thing her brother had for breakfast. But before I can even stick the spoon in her mouth a few things have to happen. She gets her gums and tongue massaged with a Nuk Brush, and then she gets a few bites on her Chewy Tube. This happens a few times and once she has gotten together and in a good swallow pattern, we start with our first bite.

She get's 30 minutes to eat. After that she looses focus and you can forget getting her to regroup herself. Some days she does excellent and will take the full tablespoon. Other days she smacks, and fights for even a few bites. We offer her sips of formula throughout via a spoutless sippy cup where we actually "pour" the formula in her mouth once she closes her lips around it. Everything has to be "just right" for Addison to really stay focused and succeed. We attempt this 3 times a day, as many days as we possibly can. If she gets sick we will attempt it, but if she isn't feeling up to it we back off.

Feeding has been a lot of trial an error with her. She still has aversions to objects in her mouth unless she is in control. Recently we've started a little more "self feeding" with her, with foods that are easy to hold yet soft enough to disolve in her mouth. She does do much better with self feeding, but it's still pretty early on for her so we want to be extra extra careful.

Going out means I must have a bag backed with her formula, her Chewy Tube, Nuk brush, a syringe for bolus feeds and her feeding tube extension, bottled water and extra formula. I'd say that 98% of the time if we are out and about I don't attempt spoon feeding her (she get's way to distracted) but I will give her things that are safe for her to feed herself or chew on.I also carry a spare button in the car and in the diaper bag just incase her's comes out and needs to changed ASAP. (Otherwise I change it every 3 months per doctor's orders.)

We aim to have all our meals at the table together and treat her just as we would Blake, as much as we can. She gets 4 "meals" a day via bolus feeds just like Blake. (I bolus feed her after we attempt table food). As her volume of table food increases the bolus feedings will decrease in volume, but we aren't there yet.

Aside from that, Addison does everything Blake does (and then some). She is constantly up to something.

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