I'm in awe of the victories God has given us over Miles' feeding. If you're not aware, Miles has a feeding tube. He has had a feeding tube for most of his life. He had a rough start at the beginning with lots of reflux, aspirating, and the diagnosis of a laryngeal cleft.
As we've cared for him over the past 9 months we have fed him primarily through his g-tube. By the grace of God, Miles doesn't have a food aversion as it seems that many children develop in his circumstance. He's had several swallowing issues that have worked themselves out and now he is finally showing real progress toward oral feeding.
The transition from tube feeding to oral feeding has definitely been a challenge. Some days are much better than others. There aren't really many guidelines to teach a child in this situation to recognize that food entering the mouth is the solution to hunger. In a sense the child doesn't know hunger as food has just always entered their stomach with no learned connection from eating to being full. The transition has been a balancing act of eliminating tube feeds and praying that he would recognize hunger and understand that food entering the mouth is the solution. All the while, we have been battling the challenge of his weight. For some time he was significantly under weight so eliminating a tube feed to increase oral feeding was risky. For months we have experimented. We worked with therapists to keep his oral motor skills active and introduced food after food to spark his interest. Each step toward oral feeding has been such a victory. I've kept a food journal documenting his success. He has come a long way! We are so proud! The Lord has been faithful!
We still have work to do, but Miles has shown such progress in the past 4 weeks that I can actually see an end in sight. We usually feed him a diet rich in pizza, ice cream, and candy. Kidding, but not really. We have yet to deny him any edible item he wants to put in his mouth. We are still working to increase his weight so sometimes french fries and oreos are helpful. I guess we'll worry about his risk for diabetes later. We are so thankful for this journey and experiencing the victories through it with such a fun-loving little man! It's been challenging, as parenting often is but because Miles is our first child we don't really know much different. This is our normal. We have learned A LOT. And I must say that in some ways tube feeding is easier. It's definitely cleaner.
You can see his Mic Key Button (the port where food enters for feeding) here.
9 months old
He used to fall asleep during tube feeds.
9 months old
This was one of the first times we fed him orally.
10 months old
Too cool for us.
10 months old
More recent. Loves lollipops.
17 months old
Just the other day. Going to town on his milk.
18 months old
Each day his appetite and desire for food continue to increase. We are so thankful! It's hard to measure where he's at exactly as far as his transition but I'd say he's about 70% oral fed and 30% tube fed right now. Meaning he's down to one tube feed a day. Praise the Lord!