Worry isn't that new to us. Even before Braxton was born we had our first glimpses into a world of unknowns and not normals that now make up our day to day lives. Seizures are terrible things, they come with many risks and there aren't any cures. However breathing problems are scarier and risk of death more imminent. Braxton has a breathing problem known as central apnea, it causes pauses in his breathing while he sleeps when his brain doesn't tell his body to breath. He could have this his whole life, we never knew until he was hooked up to monitors that showed his oxygen levels drop a few times every night. While writing this Braxton is sleeping, and four times I have had to get up and give him oxygen as he has had his pauses in breathing. I know that its happening because alarms start going off. Looking at Braxton you wouldn't have a clue, he's just sleeping peacefully.
We never gave Braxton a soother at all until we were in hospital for his first MRI. Our Bubbe struggled with sucking on a bottle and at that point couldn't breastfeed so there was no point in us giving him a soother to confuse him more about nipples. Well turned out he loved soothers, as long it was the orange hospital soother and you hold it in place for him so he can chomp and bite it. As he is getting better at using his hands he has been trying to help hold the soother, he has the right idea to bring his hands up, but not the strength or coordination to get them to his mouth. More often he will hold your hand holding the soother or his chest. He is starting to learn he can swing his whole arm above his head, then bring it down over his face to his mouth. He found this very effective at removing nasal prongs we gave him at night to keep his oxygen levels higher. Chewing away on his hospital soother calms him, so we let him do it, even though it gives him extra saliva we have to suction when he is done with the soother.
The transition from mouth to tube feeding has been especially intimidating for me. I really tried hard to provide breastmilk for Bubbe, even when he couldn't nurse. I was highly resistant to the idea of tube feeding, I saw it going against all the hard work and gains we had made teaching Braxton to nurse and eat. It is now clear how much Braxton was struggling with eating at home, and how much easier it is for him to use a tube. That doesn't mean its easier for us, so don't start thinking I'm slacking off feeding my kid formula through a tube. We have had to be trained on how to use a pump to feed, and trust me, sticking a bottle or boob in his mouth is way easier. Braxton has a strict feeding schedule, 110ml at 6am, 9am, noon, 3pm, and 6pm then a slow drip through the night. We give Braxton all of his meds through his tube, as well as his daily intake of water. He can also be "burped" through the tube, which is strange to see but obviously gives him relief. He will have his pump with him at all times, in a little back pack, although it only has to be hooked up at meal times. We also have to carry an emergency g-tube, so that, if he pulls his out of his stomach, we can put a new one in to stop his stomach contents from getting everywhere. You can find out more about feeding tubes at www.feedingtubeawareness.com It has been a great resource for me.