I just thought I would take a post to explain some of the lifestyle changes in being able to feed by mouth rather than tube. Even when I now have a bad feed with Josiah – I would take that any day over tube feeding! A typical day with the tube looked a little like this:
6:00am – get up and try to get in a feed while he is still sleeping (there was less of a chance he would throw it up while sleeping). Get about half way through the feed when he suddenly wakes up and throws up. Change his clothes, changes your clothes, clean the carpet and whatever else he threw up on. Now he is awake – so we are as well! Start over with the feed. (this process would sometimes go on for over 2 hours – because he would keep throwing up – then we would wait maybe 20 minutes and try and get some more into him.
9 or 10 am (depending on how the last feed went) – try and feed him again. Most likely we would get about 2 1/2 to 3 ounces in when he would start acting uncomfortable. We would then stop the feed and wait for him to digest some – the whole time trying to keep him entertained so that he wouldn’t throw up. About 20 minutes later start the feed again – the whole time watching for cues that he was about to throw up so that you could stop the feed. Most likely we never got the whole amount into him or he ended up throwing up some of it. Clean up all the things he threw up on.
Anyway – this process pretty much went on all day until about 11 or 12 at night. We had to get in at least 6 feeds a day – but I think I usually ended up doing about 10 mini-feeds a day!! That is why I never really went anywhere. There was not enough time in between feeds – plus if I put him in the car too soon after a feed the car, carseat and him were usually covered in throw up! The worse part of all is that he would often throw up up to an hour or 2 after the feed was over. It pretty much felt like we were living with a lidless jar of water that could tip over at any point!!! If you held him the wrong way, spooked him, made him cry, etc, etc, etc….. he would throw up!! We were constantly trying to figure out if he had enough liquid in him to keep him hydrated.
On top of all that he would often vomit up his NG tube along with the feed. This meant that we were sometimes putting the tube in up to 5 -6 times a day! This was not fun. I also did at least 2 loads of laundry a day with all of the dirty clothes. This is not even to mention the number of times we had to clean the carpet! I cannot wait to rip that gross carpet up.
That was Then – This is Now:
We feed him 3 feeds a day plus 2 drinks (which take less than 10 minutes!) Although the 3 feeds are still taking me about an hour each (plus time to setup and clean up) it is 100 times better than before!! I am still not quite proficient in feeding Josiah yet so these times should drastically improve over time. The best part of it all though is – he is not throwing up after feeds anymore!!!!!!! He still throws up some while being fed solids, but they are not the disgusting huge projectile throw ups from before. What totally amazes me is that he almost never throws up drinking liquids now. It used to take over an hour sometimes to get 5 oz into him and he would usually throw some of it up. Now he can drink 7 oz in about 10 minutes and be fine!! Amazing!! We can also leave the house because he doesn’t throw up in the car!
Thank you Ben for teaching us how to feed Josiah! It has drastically improved our lives! Thank you to everyone who supported us in this process. I can actually come visit you now!
Love,
Shari (and Jono and Josiah)
PS – I almost forgot to mention that has was 21 pounds today!!
The Official Site of Jono & Shari Hall 