This post is going to have a ton of pictures for everyone! I thought everyone might like to know how I set up Blake and Payzlee's feeds every morning. BUT FIRST I need to update everyone on a few thing. We saw the ENT this week for Payzlee. The dr was AMAZING. He has a few studies that he does that we will be joining. One is an aspiration group. What better place to for our aspirating girl then a group that specializes in kids who aspirate without a cause. The other is a lung/pulmonary group that will watch and study her lungs, ie if she gets infections a lot or not at all, if she gets sick easier, what changes can be made if she is getting sick to reverse that...those kinds of things. He also is going to go in in April and look at her vocal cords. Normally this would be done in the office but because of her age, the risk of damaging something when they stick the camera down her throat is greater so she will have to be put under. We are waiting until April because we found out when she had her gtube placed that she has sleep apnea and we have a sleep study set up for the end of March. The dr wants to wait to see if she needs her tonsils or adenoids out and if she does then he will take them out then instead of doing 2 separate surgeries. Payzlee is also having another GI flare up. We aren't sure why. We thought we had figured out all of her issues but apparently not. We go back to her GI dr tomorrow to figure out what to do and where to go from here. At this point she isn't even tolerating her feeds. She's throwing them up. We have to keep her hydrated and she does need some nutrition so we will see what they say tomorrow. I took these pictures today. Isn't she a hoot!!! I love the stage where they want to say "cheeeeese" and smile for the camera!
Ok, now back to the original post. So every morning I start with this
I make up our 24 hr formula supply every morning. I put each child's formula into their own separate jar. I measure out the kids' formula on my scale by grams. I use this measuring cup because it's easier to pour the formula into the shaker. The first thing I do is measure out the amount of formula I need. Then I put water in the shaker and add formula. It looks like this.
I then shake the formula up so there are no clumps. Clumps are bad...they cause feeding tube hell for mom's. There's blocking and beeping of the machine, and louder beeping of the machine, and finally yelling of the machine....not really but it feels like it!!!! I have to measure the formula and add a certain amount of water to get it to the amount of formula we need.
Right now with Payzlee's GI issues she and Blake are taking the same amount of formula in a day. Payzlee usually takes less but for now it's the same. 196 grams of formula and we mix with water until it equals 31 oz of formula. That's about 1-2 oz that I can spill and have for the tube with the last feed but they are both getting close to 30 oz of formula per day. That means I go through 1 can of formula (or more depending) each and every day. That's 30-31 cans of formula EVERY SINGLE MONTH. This stuff is NOT CHEAP either. We have been fortunate enough to have our insurance pay for all of it once our deductible has been met. This year we met it on both kids in the first 2 weeks of January with all of our hospital stays!! If we were to buy the formula for each child for a month, we would be spending about $2,000 (could be more or right at....it's been a while since I have priced it out)A MONTH just with formula alone. One thing I don't talk about, which I will now share, is, we have Medicaid. We don't qualify for the complete free so we have a deductible for all medications, dr visits, hospital stays ect. Sometimes they aren't much but they add up. When we go to several dr appts a month, we tend to pay out on deductibles. That being said, I am SO GRATEFUL for the coverage we get. They cover a lot of prescription costs. Blakes medicines for one month are close to $1,000 dollars and Mylee's are close to that with her asthma. Again, we are blessed, so blessed. Now back to more preparations!!
So after I mix the formula, I put it into their pump bags. I then attach the extension(what fits into their buttons) and then I prime the line or get all of the air out of it. If I put all that air into their bellies, there would be puking for sure and a crying mom! Here is the bag and extension and me starting to prime. The teal part you push on while squeezing the bag and it helps move everything through faster.
Once Everything is primed, I get the pump ready. This is what the pump looks like. It is the infinity pump.
From there I put the feed bag into the backpack, strap it in, take the teal thing I squeeze for priming and insert it into the pump. The rubber teal thing goes around the black circle and the rest is stretched and hooks onto the right of the circle. This is what makes the pump send out formula.
From there I wind up the tubing and put it in the back pack like the picture above. I then have to wrangle down a child and strap it to their backs and hook them up like so...
FYI he is NEVER this happy about a feed! He was only happy because I told him I needed him to pretend so I could get a picture for people to see!!!
Ok, now back to the original post. So every morning I start with this
I make up our 24 hr formula supply every morning. I put each child's formula into their own separate jar. I measure out the kids' formula on my scale by grams. I use this measuring cup because it's easier to pour the formula into the shaker. The first thing I do is measure out the amount of formula I need. Then I put water in the shaker and add formula. It looks like this. 
I then shake the formula up so there are no clumps. Clumps are bad...they cause feeding tube hell for mom's. There's blocking and beeping of the machine, and louder beeping of the machine, and finally yelling of the machine....not really but it feels like it!!!! I have to measure the formula and add a certain amount of water to get it to the amount of formula we need. 
Right now with Payzlee's GI issues she and Blake are taking the same amount of formula in a day. Payzlee usually takes less but for now it's the same. 196 grams of formula and we mix with water until it equals 31 oz of formula. That's about 1-2 oz that I can spill and have for the tube with the last feed but they are both getting close to 30 oz of formula per day. That means I go through 1 can of formula (or more depending) each and every day. That's 30-31 cans of formula EVERY SINGLE MONTH. This stuff is NOT CHEAP either. We have been fortunate enough to have our insurance pay for all of it once our deductible has been met. This year we met it on both kids in the first 2 weeks of January with all of our hospital stays!! If we were to buy the formula for each child for a month, we would be spending about $2,000 (could be more or right at....it's been a while since I have priced it out)A MONTH just with formula alone. One thing I don't talk about, which I will now share, is, we have Medicaid. We don't qualify for the complete free so we have a deductible for all medications, dr visits, hospital stays ect. Sometimes they aren't much but they add up. When we go to several dr appts a month, we tend to pay out on deductibles. That being said, I am SO GRATEFUL for the coverage we get. They cover a lot of prescription costs. Blakes medicines for one month are close to $1,000 dollars and Mylee's are close to that with her asthma. Again, we are blessed, so blessed. Now back to more preparations!!
So after I mix the formula, I put it into their pump bags. I then attach the extension(what fits into their buttons) and then I prime the line or get all of the air out of it. If I put all that air into their bellies, there would be puking for sure and a crying mom! Here is the bag and extension and me starting to prime. The teal part you push on while squeezing the bag and it helps move everything through faster. 
Once Everything is primed, I get the pump ready. This is what the pump looks like. It is the infinity pump. 
From there I put the feed bag into the backpack, strap it in, take the teal thing I squeeze for priming and insert it into the pump. The rubber teal thing goes around the black circle and the rest is stretched and hooks onto the right of the circle. This is what makes the pump send out formula. 
From there I wind up the tubing and put it in the back pack like the picture above. I then have to wrangle down a child and strap it to their backs and hook them up like so...
FYI he is NEVER this happy about a feed! He was only happy because I told him I needed him to pretend so I could get a picture for people to see!!!
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