One month after tube wean

It is hard to believe that a whole month has already gone by since we finished the tube weaning program.  I was so worried that things wouldn't go well once Heidi left, but Sam and James are awesome and within just a couple of weeks they did not need to be tube fed at all!  We went out of town to visit family for a weekend in the beginning of April and I wasn't sure how things would go, being away from home and out of our normal routine and all.  I packed all their tube feeding supplies because up until that time they had at least needed a few ounces of formula by tube everyday.  I was prepared to give them all of their feedings by tube for the weekend, just in case.  

But it turned out that they did even better being away from home and they did not need to be tube fed at all that weekend and for the next three weeks!  Maybe it was the change of scenery, being around their cousins, getting some extra encouragement,  or just that they were ready.  Whatever it was, it was very exciting and a huge turning point for both of them.  

We have only had to give them a few ounces of formula by tube once since then,  just a couple days ago.  They weren't drinking as much and I have been worried about their weight,  James' weight has been stable but Sam is still losing a little bit.  I had been adding a little bit of cream to their drinks for about a week and it was fine at first but started to upset their stomachs and so they just didn't drink as much for a couple days.  I stopped adding the cream though, and they are both picking back up on their volume intake.  

They are still on liquid,  Pediasure and Carnation instant breakfast, but they are starting to seem interested in more foods.  They like yogurt, just a few bites at a time though, and we have been trying some different smoothie flavors.  They also like to taste pickles, chips, and other salty things but just lick them, no chewing yet.  I thought they would be sick of chocolate milk by now, but they still love it and ask for it all the time.  Sam and James have made, and are continuing to make, some amazing progress and we are so happy with how great they are doing!

One week after tube wean program

Sam and James are doing so great!  They have made a lot of progress in just one week, it is so amazing!  At the beginning of this week, James drank 20 ounces in one day. The next day he drank 24 ounces!  He is really catching on to recognizing hunger and knowing what he needs to do about it. Yesterday he drank less, about 14 ounces, but that is still good.  At this point, they are developing self-regulation and figuring out how much they need in order to make them feel good.  It is normal for them to drink a lot one day, and then not so much the next day during this period.

Sam has been drinking about 10-12 ounces a day, which is also really good.  I have been giving him a couple ounces of pedialyte after drinking to keep him hydrated and make him feel good about his hard work.  He has been a pretty happy boy and the amount of tantrums he throws has significantly decreased, which makes my job a whole lot easier.  I have been talking to Heidi everyday and she says that we can start cutting out the pedialyte to see if that will help Sam feel like he needs to drink more.  The only time he will be tube fed for now is before bedtime, if we feel like he needs it.

They are both so close to not needing their tubes at all!  They still just drink chocolate Carnation instant breakfast, but I am working on getting them to try some new flavors. They tried vanilla today and didn't mind it for a minute but then they wanted chocolate again.  That is fine for now though, we will keep working on flavors and start adding in puréed foods later when they are ready.  I am so happy that we went through the tube weaning program. It was not easy, but it is making life easier for us and giving the boys more freedom, not having to be hooked up to feeding pumps for hours everyday.  I will continue to post updates on their progress.