Yesterday was a hard day, but ultimately, a good day of progress. Poor Kiran was so hungry all morning as we waited for the surgeon to give us the okay to start feedings. He had a lot to say, and it broke this mama’s heart that she couldn’t do anything until we got the green light. 

Feedings have been going pretty well. The nurse showed us how to do the first one, and I have been doing them ever since (Arif did his first at his 5 am feeding this morning, at my instruction, no nurse present!). That part is pretty easy and works pretty slick. We have been doing the feeds by gravity so far – and it goes in so much faster than the tiny NG tube – but Kiran does seem a little uncomfortable for 10 or 15 minutes after a feed so we may have to play with slowing it down, especially as we up the volume. 

We will be waiting on the green light again today to increase the volume – we have been sitting at 60 ml each feeding for the past several – only half his normal intake. He is still on fluids, too, and we will wean him off of those as his food volume increases. 

Today we will learn how to change the dressing around the g tube and take care of it during the healing process (the next two weeks). I am anxious about this part but plan to jump right in – it’s the only way to get comfortable with our new normal. I want to feel confident going home. 

And I desperately want to go home today. I don’t know yet how likely this is, but I am hopeful.  So ready to be out of the hospital setting!

Overall, this whole process could not be going more smoothly. Thank you to everyone for all the thoughts, prayers, encouragement, and visits. We feel it all and appreciate it greatly. 


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