Thursday, June 10, 2010

Up with Calories = Down with Volume

The boys vomit a lot, every day. Not news. But what is news is that we finally have a plan to maybe help them keep from vomiting. We have been asking the GI every day when can we cut back on the volume of formula the boys get every day. This way we can slow down the rate and get them the calories but not stress the stomach so they will hopefully not puke at every feeding.

The response from the feeding clinic is that we can't do that until the boys show that they are gaining weight from the intake they are getting by mouth. They need to be gaining an average of 4 to 10grams a day or more consistently. Since Cameron had lost some weight (which we expected from being stressed about starting the program and from being sick) we had to also add to our goal that he regain that weight he lost plus show the daily increase of 4 to 10grams a day. Evan did not lose any weight, but he plateaued which isn't really good either.

Since last week the boys are up for the first time since starting the program 6 weeks ago, and significantly so. Cameron is now weighing 12.5kilos (that's 27lbs 8.9oz) and Evan is 10.9kilos (that's 24lbs .48oz). Which is about how they've been trending in size difference all along and still keeping them right where we want them on their individual growth charts. This means that we can try a new formula (we are on Peptamin Jr and will be switching to Boost Kids Essentials) regimen to help keep the boys on track while hopefully keeping them from puking all the time.

Currently Cameron is getting 900mls of formula in 24hrs. His noon bolus feeding during naps being 200mls of formula with two scoops of DuoCal in that mix to make up an additional 50mls of volume we weren't giving in hopes that he'd stop puking in his nap. This is all given at a rate of 150mls. Then at night he gets the remainder 650mls with another two scoops of DuoCal to make up for some more volume we weren't giving him. The rate of this large overnight volume starts at 150mls for the first hour and then we lower it to 100mls for the second hour, and then we drop it one last time to about 75mls for the remainder of the night and let the milk bag on the pump run dry and turn it off some time around 1am.

Evan is pretty much the same schedule including the rate of flow that he can tolerate but he requires less volume than Cameron, so he only has been getting 850mls per day of formula in the pump. At naps he gets 250mls (with the DuoCal mixed in for extra calories so we could cut some of that volume) and then the remainder is at night with another couple of scoops of DuoCal for the extra calories.

Now the new formula the boys will be getting in their feeding pumps is Boost Kids Essentials (they make a 1cal mix that you can buy in stores for about $10 a six pack, but we will be getting a prescription version of this that is a 1.5cal mix through our medical supply company) and then we will also be feeding the boys this as their milk with meals. We will also be dropping the DuoCal completely. This is kind of a relief because DuoCal is pretty much just empty fat calories and no nutritional value. An amazing product to pack on pounds for kids who need it, very versatile in the ways you can cook and bake and mix into foods without effecting the flavor or consistency, but the risk is that they are missing out on vitamins and minerals and if used for an extended period of time without supplementing those lost elements can play tricks with the child's iron levels. Hence this is product should NEVER be used without consulting a physician first.

Cameron will be getting a total of 650mls a day (!!) that is the equivalent of 975 calories a day, which will be given in two boluses, the nap and the overnight feedings. At nap he will get 200mls and the remaining 450mls will be at night. Evan will be getting a total of 600mls a day (!!!) that is the equivalent of 900 calories a day, the 200mls during nap and 400mls at night. We will likely have to slow the rates down considerably to do our best to ensure that they don't vomit, especially in their sleep, which means that technically speaking they may not be off the pumps more or earlier than 1am. But because this formula has a tendency to be very thick and gooey or mucus-like when vomited up, thus causing a bit of panic when they have trouble clearing their airways, there's not much that I can do to help them when this happens so we have to try to slow it down to where their stomach can stay ahead of the digestion. It's scary for them and me.

We'll be also giving them a 30ml water flush as a chaser after their overnight bolus because now that they're getting less volume we have to be really, really, REALLY careful with their water intake because they may easily become dehydrated. This whole plan relies on the boys continuing to consume at least 2oz of a puree and 2oz of a liquid per meal three to four times a day.

But the bottom line is that assuming the boys acclimate to the new formula and tolerate it eventually at higher rates they will be off the pumps as much as possible and we can feed them more and more as their little tummies learn to tolerate more than 2oz of solids in them at a time. The Director of GI for the feeding program says that he's certain that the boys problems are a motility issue that is aggravating the reflux far longer than it ever should have. And he said that my boys have the most sensitive stomachs he's ever heard of when it comes to keeping them positioned right and is amazed that we can trigger a reflux vomiting episode simply by disconnecting their feeding tubes.

Yesterday morning we did our first run of feeding the boys together in the same room. Initially it was to be Evan's primary therapist feeding them but since he's never fed two kids at the same time he asked me to come in and do it so he and Cameron's therapist (who was watching through the one way mirror) could watch and see how best to modify the protocols since the boys have two slightly different methods that work well for each of them individually, but I have to be able to feed them by myself. That is to say, if I have to "discipline" one child to get them to take a bite (ie. turn the tv off until he takes the bite of food) what happens to the other child who's not being fed at that time but loses his tv because his brother is refusing to eat? It is a work in progress because individually the protocol requires that I pause the DVD player when the one child refuses. When I feed the boys together I need two therapists sitting on either side of the boys with a file folder to drop down in front of their eyes to block their individual view of the tv and get them to take a bite without punishing the child who's not being asked to do anything.

I only have two hands and can only feed one very resistant mouth at a time, so I'd basically have to become like the Hindu goddess Shiva with her many arms in order to feed them with this protocol. But then what mother of multiples doesn't need to do this every day?


kozer1 said...

I hope the 1.5cal/ml formula works! I tried it with my DD, and it made her puke way too much. She was/is always great at tolerating any 30 cal/ml formula with no puking at all, but the tiny difference in cals made a huge difference for her :( I can't wait to see how it goes for you - maybe I'll give it a try again for even just one bolus feed!

Trish said...

That's awesome!!
God.. it's so hard to keep up with it all just for Robbie.
Times 2 makes me want to hug you. Or make you a drink!