How awesome is my mom?

I found this product online today called a summers.lifeguard. Wow what a great concept! I knew right away it was something we could really REALLY use with Marissa! I immediately called the company to find out more info. I really love what they have done. Unfortunately, I don't have an extra 375$ right now (which is about how much 3would cost without shipping) and 3 is really the minimum number that we would need. I was pretty bummed. I called my mom and she said she'd bring her sewing machine over and we would see what we could come up with. I had a few yards of some flannel Id bought to make night gowns for the girls and my mom picked up a few yards of velcro. I am so so so thrilled with what my mom was able to do! I still really want to order a summers.lifeguard when I can afford it as I like to support small businesses and their inspiration is such a blessing to us.

The things that excite me

well for one my daughter has not thrown up for over a month...not ONCE. This is the child who used to puke daily and after nearly every feeding. I am nervous to be blogging this...I hope I don't jinx us. Second, this twin size bed...oh I want this bed. I am waiting to hear from the company how much it costs. I found some pointers on the site for getting insurance to pay for it. I will definitely pursue that. But in the meantime I may just cough up the money--IF possible. I am thinking this could cost several grand...but I hope not. Marissa has decided she wants to climb out of her crib. I cant sleep I am a nervous wreck. I am so afraid she will pull out her line or at the least break the iv tubing in the process. I thought about putting her into a twin bed but there is noway she would stay in it. Off she would go and she'd just keep on pulling until her line snapped and she was free. Ask me how I know *smirk*

Success!

Since her last appointment Marissa has gained ANOTHER 1.4pounds and grown a whopping 3inches! Shes grown so well her GI agreed we can reduce her TPN from 20 to 18 hours per day!!!!!!!!!!! This is VERY exciting news! So that gut of hers is obviously absorbing---I give SO MUCH credit to those digestive enzymes! *happy dance*

How to change a Mic-Key g-button

This is what I found this morning.....niiiiiiice ehh? Whats a mom to do? Why grab the camera and create a tutorial ofcourse*grin*

Breakfast tutorial

When "hooking up"....has nothing to do with the opposit sex

I stole that quote off of a member at a support board Im a new member of. So many machines for such a small little person to carry.


g'nite

Our routine

is ever changing. Here is an example of our current feeding/med schedule:



7am catch puke and administer glycerine suppository
8am blend breakfast 2ounces banana with 2ounces sweet potatoes 2capsules of digestive enzymes, .6ml iron and a large splash of almond milk...zevex infinity at a rate of 30mls per hour for four hours.
12noon meds actigal and flagyl via g-tube unhook enteral feed.
4pm unhook TPN and hook up enteral feed(similar to breakfast but with veggies)30mls per hour over four hours.
6pm meds actigal and flagyl via g-tube.
730pm prepare TPN and lipids.
8pm hook up TPN and unhook enteral feed.
12am meds actigal and flagyl via g-tube.