Friday, June 8, 2012


On Wednesday Jensen's NG tube came out (again). It is becoming increasingly more difficult to keep it in. We are constantly replacing the tape and trying our best to keep his chubby little fingers away from it, but still we end up replacing the tube every week or so. Since we are so close to Philly, we thought we would just leave the tube out for one feeding and see how well he does. We had been given the green light to increase the amount in his bottles as he tolerates it. However, the NG tube causes his reflux to be even worse so we were never able to get very far. He is allowed to eat by mouth for 20 minutes. Any longer than that and he will be burning more calories than he is taking in. Keep in mind that his food is thickened to honey consistency (yuck)...this stuff is THICK. It is a lot of work to eat one bottle. He was previously only eating 40 ml by mouth of his 100 ml total volume at each feeding. 

We gave him a chance Wednesday afternoon to eat a 100 ml bottle. He gulped it down in 14 minutes with no problems whatsoever. I cried I was so proud! Jensen amazes us! The tube came out on Wednesday and we haven't looked back since! We have been doing every feed by mouth =) His medication is a little different and we're still working on finding the right way to give it to him but he's getting there. (Because it is thin liquid we are still worried about the risk of aspiration, so we're playing it safe.)

Its not ideal to have him take such a high volume of thickened milk by mouth, but he's doing it. Its a million times easier to deal with than the NG tube. No more testing his pH 500 times a day, no more taping and re-taping his poor little face, no more wasting milk to prime the line to a pump that only sometimes works... Ahhh this is wonderful =)

Can you tell we are a little excited?! I'm so proud of my little man...he's such a trooper! One of the things I'm most excited about is that when we fly to Philly, that's a lot less stuff we have to carry with us. The NG tube requires lots of supplies and a separate backpack to fit the food pump. Its a nightmare...was a nightmare. 

We have less than a week until we leave. Jeremy and I are becoming very nervous and are trying to spend as much time with our munchkin as possible. We are trying to get in all the snuggles and laughs that we can before he has to go through another surgery. This one is going to be tough but we are ready to move on. 

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