1. It takes a lot of extra time to get him ready for bed (open new feeding bag, calculate fluids, prime his tubing that connects to his feeding bag, change his diaper, put on loose fitting pajamas (absolutely not zipper kind whatsoever), place gauze pad over g-tube site, put on g-tube extension, tape tube extension two times to secure it in place, flush tube, feed him a small bottle, connect tube to his g-tube extension, read a book or listen to music, rock him to sleep, etc! The key is he has to be asleep before we will lie him down otherwise he will play with his tubing, ugh!!!
2. I have failed to properly close the tube right after flushing the tube! As a result, water or Boost Essentials leaked all over me and baby, yikes!
3. I didn't attach his tube extension from his g-tube site by turning it properly and within minutes Boost leaked all over his clothes!
4. Due to little brother preferring to sleep on his stomach, occasionally his g-tube extension pops off and leaks Boost all over his clothes, bedding, etc! What a rude awakening and mess for us to clean up! Now we tape the extension on the top near the g-tube button to keep it in place!
5. For whatever reason, on a few occasions the iv pump stops pumping boost and says it's done when there is still a lot of fluids in the bag! Huh?!
6. The machine freaks out if we try to prime before it cycles through the rate and dose numbers after turning it on. So then we have to shut it down and try again! The key is patience!
7. While baby brother tosses and turns in his sleep he gets the cord wrapped around his body and a couple times his neck, ack! So scary! I recall his doctor noticed his umbilical cord had a small knot after birth probably from him flipping and moving around in the womb. He moves all over the place while he sleeps!
8. I'm not a huge fan of the chocolate Boost! Not only does it stain his clothes, bedding, etc when his extension tube pops off during a feeding, his bowl movements are shockingly similar to the color of his chocolate Boost the next day! Little brother also seems upset during the night with the chocolate Boost compared to the vanilla or strawberry.
9. Obviously, it's been challenging to get him to self soothe and sleep train him while tube feeding him when we cannot leave the room until she is finally sleeping! Luckily, I've been able to get him to take naps during the days without a hassle. He can go to sleep without me holding or rocking him now!
10. After his tube feed is done, occasionally we wake him up when we disconnect the tube extension from his button and rip the tape off his side. I am surprised that he can sleep through it most of the time!We definitely won't miss Stanley! Goodbye Stanley!