Thursday, March 17, 2011

Happy Late Valentines Day!

Happy late Valentine's Day from Martin! For a kid who refuses to eat food, he sure loves to put everything he can into his mouth.  Everything BUT food.  He wanted to eat this card like crazy!

On another note, Martin's blended diet is going so great.  I've got our 'beginning' feeds figured out.  He has a low tolerance for large amounts of volume--3-4oz is his limit, if I don't want to clean up puke (which I DO NOT).  I've been able to create a formula that involves baby food (currently still one at a time, to monitor for allergies), baby cereal, juice, tiny bit of oil (high calories, and good fats) and thin out with formula.  Enough to give him the calories he needs for the day, but not give him too much volume.  The difference so far is wonderful.  We used to deal with puke within 30 minutes after every feeding, or in the middle if he started coughing (which leads to gagging, then puking), or sometimes if he tasted food it would trigger his gag reflex.  Now?  It's been cut in half.

IN HALF!!  that means I'm not changing his clothes 4 times a day, I'm not running out of burp clothes or bibs, I'm not having to change MY clothes as much. 

The way I figure it, with all the puking he was doing before, he's getting more calories now, even though the number is the same, since he's keeping it down.  That will lead to weight gain, which we need.

I'm making sure to keep him with plenty of fluids also, I give him a 2-4oz of water throughout the day.  So far, according to the information I have that tells me how much fluid he needs a day, he's right on track!  I'm excited that it's working so well. 

I'll keep trialing new fruits and veggies, and soon I'll be trialing milk products, so we can GET RID of the formula!!  woot!! 

And here's our birthday boy!!  I'll post more pictures later, but I can't quite believe he's 1.  Wow, what a year we've had!!

Wednesday, March 9, 2011

Starting the new feeding

As I've been doing my research on blenderized diets, it's becoming more and more clear to me why I'm going to do this.  Just because my child has a feeding tube, does not mean he shouldn't be able to have to benefits of real food.  He doesn't need a special food.  Yes, he needs a liquid food, but it can have some variety to it. 

Here's some stats I'm using as my starting place:

Martin currently gets:
950mls of formula per day=31.6oz per day
40-50mls juice per day=about 1.5oz per day
760calories per day from formula--24calories per ounce
approx 15-20cals from the juice per day

Per feeding: 
10mls of juice=5cals
150 mls(approx 5oz) of formula=120cals

I've also gone through all the baby food jars, and boxes of baby cereal I have and figured out how many calories per ounce they each have. 

So I'm starting like one would start an orally fed baby--1 food at a time.  Right now it's sweet potatoes, which is a food he doesn't seem to mind orally either.  As opposed to some of the others that just the taste/texture causes gagging/retching/vomiting.  I'm drawing up his normal 150mls, and adding 1Tbsp of sweet potatoes, 10 mls of juice, and his normal daily other medications/supplements (actually right now, he's just on a daily probiotic).  Since it's still thin enough, I'm able to use the pump to feed him--he hasn't been tolerating gravity feeds since he got sick a couple weeks ago. 

And I'm still doing lots of research, trying to figure out how to get everything into his diet, so he gets enough liquid, enough calories from all areas, and still grow.  there's not a lot of info out there, it seems to me that if you're baby's tube fed, and not taking anything orally yet, you just keep with the formula, which makes me sad.  Food and eating is such a big part of our life, that I want Martin to enjoy it as well.  There's just no where out there that says "your child is Xyears old, and they need this much liquid per day to stay hydrated, this much protien, this many carbs, and total calories should be this much." 

I really need to find a pediatric dietition who would be on board with this idea, and help me figure out how much Martin needs.  I can only go so far myself.  and I'm worried that his pediatrician won't be on board.  In which case I would be going forward without his support anyway.

Sunday, March 6, 2011

Blenderized Diets

I'm starting some new research for Martin, as he nears his first birthday.  I'm exploring the idea of blenderized diets for him. 

There not a lot of information out there. . .I'm weeding through it all, trying to find as much from people who have been there and done that.  Thankfully I have a few tube-feeding forums i visit, with very helpful parents who are willing to point me in the right direction!

Somedays we have success with Martin 'tasting' some food.  Most days we have gagging, puking, crying, hands shoving spoons away, throwing things off the tray.  It's a real exciting event.  The dogs love trying to lick the spoons/bowls/plates/syringes that drop before I yell at them. 

Anyway, I'll keep you updated, once i figure out a game-plan, and a way to start.  Hopefully without having to buy the $40 book!!