New Feeding Plan

We are trying a new feeding plan with Mason. As many of you know, we seem to be constantly revising and tweaking his feeding plan in hopes that his oral intake will increase. Our newest big revisions have come from the CDH clinic and our latest meeting with his Occupational Therapist.

I haven't posted much about this lately because I was afraid I would jinx Mason's progress. Mason has started drinking water, a really big step for him. Each day is different and sometimes he will take only a little, while other days he will drink 2 1/2 ounces. He has also overcome a HUGE hurdle recently. Until recently, Mason would gag and retch if he managed to get any crumbs or food into his mouth. Even pureed food would make him gag. Now Mason is willing to put food into his mouth and take small licks or bites of pudding. He has started to bite into crackers and goldfish and will even swallow the small crumbs left over, while removing the larger pieces from his mouth. Mason still has fear when larger pieces make it into his mouth and he will rake them out. We feel he is getting close to wanting to chew the larger pieces, and overcome this next big hurdle.

Now for the newest feeding plan. I must warn you that this goes into detail and probably won't mean very much to those who don't have tube fed kiddos...

Mason gets 30 ounces of 30 calorie formula per day, or 900cc's. His daytime feeding plan is split into boluses (or large bursts formula). He gets 4 boluses a day with 6 ounces (180cc's) and right now is taking them at a rate of 290 cc's/hr. Each bolus takes about 45 minutes to deliver. At night Mason gets 170cc's of formula delivered at a continuous rate of 45cc's/hr. His continuous feeds take less than 3 and 1/2 hours (since our pump is a little fast at lower feed rates).

This is a pretty big jump from where we were at before. Just two weeks ago, Mason was only getting 5 ounces of formula at a rate of 250cc's/hr. He received 250 cc's of formula at night for 5 hours (at the same 45cc/hr rate).

Our goal this week is to slowly increase the rate so that his bolus takes closer to 30 minutes. Once we get closer to 30 minutes, our next goal is to get him to take 7 ounces of formula (or 210 cc's). Every time we increase his bolus amount, we are removing a portion of his continuous night feed. The reason for this is that the night feeds pretty much zap any hunger he may have during the day.

We still have yet to determine if Mason is having any hunger cycles. We try and space out his boluses by 3 and 1/2 to 4 hours to allow him some time to get hungry. Before each bolus, I offer a sippy and snacks for him to take in orally. He also actively participates in lunch with me and dinner with Travis and I. At these times, we aim to give him experience with the food that we are eating, along with his usual crackers. This helps him to overcome his texture aversion.

Another goal just given to us by his OT is to try and get Mason to drink a little bit of whole milk. He is very willing to take sips of what we are drinking, such as water, gatorade, or milk. We hope to have him start taking whole milk in some measurable quantity. Once he can consume a few ounces per day, our OT will propose a 2-3 week trial of eliminating his dinnertime bolus. The goal here is to allow Mason to develop the connection between hunger and orally satisfying that hunger. Since Mason has been tube fed pretty much his whole life, he was never able to develop the connection that tells him to eat if he is hungry. As long as he is 100% tube fed, his tummy magically fills with formula when he is hungry. The hardest part will be convincing Mason's team of docs to buy into this 2-3 week trial, especially during the winter months. Since he is in the 80% for weight, I feel we might have a good shot at it. The milk he drinks will offset the calories lost by eliminating the bolus (and hopefully help convince his docs to allow us to try).

The biggest challenge for us when it comes to Mason's feeding seems to be his internal anatomy. Normally, we would try and have Mason receive a bolus while playing with food so that he can make the connection that food satifies hunger. However, Mason has some interesting anatomy and cannot tolerate a bolus while sitting upright. Somehow, his stomach does not empty well while his is sitting. He has his docs stumped. We give all boluses in a reclined position and he handles them really well. When he gets his bolus, we try and have him suck a pacifier (although his drive to do this is naturally fading with age) or give him a cracker and sippy cup.

I will post another feeding update in a couple of weeks.