Gaining

So, on Tuesday, X was weighed and measured. He gained .6 pounds in 12 days and has grown 1/4 inch. I called the GI doctor to see if we needed to add the hour back on his feedings. I still haven't heard anything. We worked so hard to get him to eat high calorie foods those 12 days. I hope it was enough weight gain.

We've also been working on increasing the rate of his feedings. Before our hospital stays in Feb and March, he was only getting 60ml of formula per hour, was hooked up to his feeding pump 20+ hours a day, and we had to drain stuff out of his stomach into a diaper while he slept ( called venting). When we were discharged from the hospital X was at a rate of 80ml per hour and we vented at night for just a few weeks.

Now, X is at 84ml per hour and we are not venting him at all. I do not miss venting him...we had so many leaks and it was a pain when he had to get up to pee in the middle of the night. I would have to hold this heavy diaper and help with tubing and his backpack, all around 3:00 am.

I would LOVE to get him up to 90-100ml per hour, but I don't know if that will work for X. We are increasing his rate by 1ml/hr every 5+ days. Which is a very slow way to increase, but if we go too quickly he will start throwing up again and we will be back to 60ml/hr. When X had the ng tube he was up to 86ml/hr until we tried the bolus feeds and everything went downhill.

Anyway, the good news is, X is gaining weight again and he is at a fast rate for him. He is hooked up from 6pm until 8:45am. He loves getting unhooked so early in the morning and it seems like he is getting hungrier earlier in the day and he is definitely hungrier in the evening.

Oh, and this boy, Mr. X? He is a maniac in the water. I am pretty sure he will be swimming before the summer is over. He is fearless and could care less if water gets up his nose or in his mouth. He is beginning to swim underwater. Really underwater, not just his face in the water. I do not know where this fearlessness comes from. It wasn't that long ago he would scream and cry when he needed his hair washed. Crazy.

I know at times my posts probably sound like a whine-fest. I do realize that we are blessed and fortunate. I don't think we have things worse than everyone else or that our family is unique. Sometimes all this stuff with the feeding tube is overwhelming and an inconvenience ( and yes, an inconvenience is not a horrible thing. I'll take inconvenient over the hospital stuff we had any day). And it's scary because we don't know why X won't eat enough and we don't know why the decrease in the amount of the protein in his formula stopped the vomiting. Those are two pretty big unknowns. I know God knows exactly what is going on, but I do not. So, I am learning to trust in the midst of the unknowns. Not an easy thing for me. I'll chalk it up to character development. But to be honest, I wouldn't mind a little less "character" in my life ;).

one of these times I'm going to leave all the autocorrect words in my post. it will read like a Mad Libs passage.



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