Breathe

So it's been a long time since I've posted about Evan, his eating, vomiting etc. I guess it's just one of those things. I feel everyone knows we've been having trouble, and it's definitely not usually the highlight of our day. Usually I'd rather talk about the more fun stuff, but today I have some exciting news to share. Evan has been eating on his own (well, minimal help on a few scattered days) during the daytime for the past 2 weeks!! During the first couple of days he dropped from 21lbs 9oz to 21lbs even, but he's held steady there since, on his own. Overall he's gradually increasing the amounts he's taking. I can not describe to you all the feelings that are going with this. Yes, there's excitement....my heart soars and I nearly cry when I hear him suck and swallow...happily, drinking....it's the best thing since.......well, nothing tops it at the moment. I stress.....every parent wants what's best for their kid.....for so long we've been trying every trick we could come up with to get him to gain weight, maintain weight, stop puking......calculations, endless trials and errors, it's been a HUGE part of our life. Now I'm supposed to just stop feeding him, let him take control, and I watch the clock...how much has he taken so far, ....it's not enough...he's having bigger eating days, and slower days (I'm assured "normal" kids do the same. We weigh him, he lost that first 9oz....I have to tell my self, breathe, this is normal, he has to learn hunger, and what he has to do to fix it. He's not going to eat 100% what he needs to right away.....breathe, trust your child, he has the skills now, he's ready.....breathe, don't panic, don't start feeding through the tube again....breathe.
He's still getting a night time drip with a significant portion of his calories, 50ml/hour of 30cal/oz for 10hours, and he's still getting his 10ml of coconut oil, we still need to help him burp through the tube, and during the day, on occasion, we've had to give him some pedialye or water, just to help catch up on hydration....he feels better, and then eats better after being good and hydrated. He's definitely drinking more than eating, textures are still a big hang up, if he gets something that doesn't feel right in his mouth...he still gags some to get it out. He's definitely getting more opinionated about what he will and will not eat....if he likes it, down the hatch willingly....takes one look at something and if he thinks he won't like it it's not getting near him. Hence, I went on a crazy shopping spree.....kept grabbing things off the shelf thinking...maybe he'd like this, or this or this. Stephan says I should just offer him one or two things, let him focus on them, he'll eat better. I try, I'm not very good at that. If he doesn't seem to want to eat something....off I go to get him another choice....probably need to cut that out.

We're seeing some really cool changes with this though.
His attention span is so much better, he's playing with his toys more, and reading books with us way more often, and for longer periods of time.
He's eating solids off of a spoon....for me (he's always done it better for Stephan, and sometimes not at all for me), happily, willingly, opening his mouth....sometimes even pointing at the jar and saying 'doyousee" when he wants more.
He's started telling us when he's hungry....a couple of days ago he dug his bib out of the laundry basket (clean, just not folded), and tried to fasten it around his neck, brought it to me, and left it on when I put it there, then went to where his highchair table was, pointed to it and said his 'doyousee' again, put him in, and he ate! He's going to the cabinet, asking us to open the door, picking out something he wants, and taking one (gold fish, puff, sugar wafer, whatever) out and walking around sucking and gnawing on it.
We accidentally programed his pump wrong two days ago.....forgot to clear the dose delivered on it so he only got 80mls and it shut off, dumb thing doesn't beep when the dose is delivered....we woke up to Evan crying like something was wrong, at 5am....found the bag full of food....he was hungry! We made him a bottle of juice and milk, he drank some of each about 5-6oz total, and went back to bed....WOW.....I know, sounds simple, sounds NORMAL, I could cry, pee my pants and dance a jig all at once, while at the same time some one should get me a stiff drink be cause holy crap he just missed all that food on his night time drip......don't panic....breath.
Last night after I went to work (leave here about 4:30pm) Evan ate 1 1/2 oreo cakesters, 3/4jar of baby food 1/4-1/2 container of yogurt, a good 8 or so oz of milk with carnation instant breakfast in it, and a couple of oz of juice. Before I left he'd drank about 5-6oz juice 5-6 oz of milk with carnation instant breakfast, and only taken about 10-20 bites of baby food/yogurt etc total. Today was one of the biggest days of eating, on a bad day he's not eating nearly as much, but like I said the trend is up.
He's not vomiting! Only a couple of gags here and there with foods that have textures he's not comfortable with yet, but even then it's like 10-15mls total max....spit ups! yeah! It's like something is clicking neurologically with him, he can eat things by mouth that we could never dream of giving him down the tube, beacuse instant vomiting would insue, I can't explain it, I just know it's happening.

SO, today our OT said we needed to cut back his night time drip. I freaked, practically started shaking, my hands went to my face instantly and I started shaking my head no. We've tried taking him off the tube a few times in the past keep in mind....and he just went almost 48hours on like 10oz of food total....didn't go well. All that went through my mind was....he's not ready, it's only been 2 weeks, I'm scared....he's too little already....look at my kid...he's too dang skinny....he's going to loose weight......he needs more time, to get better at this, more consistent, eat more solids.....cut back his night time drip.....it's too soon (all thoughts going through my head). The ironic thing is that usually she's the one encouraging patience, reminding us we need to go slower than we think, keeping us sane, and reminding us we are making progress when it seems like there's none. Usually I'm the one pushing that next first step.....now she's saying go, and everything in me is....not saying no...but like I said, there's a lot of emotion with all of this. I thought, OK, we could cut back an hour, and I could just increase the rate by a little bit every hour to make up the difference, and then he'd still have more time to be hungry because it's stopping an hour earlier ....right? She didn't like that idea...."no, you need to cut back and not up the rate". AHHH

Tonight Evan's drip just stopped about 10 min ago...close to 3am.....I'm scared, but singing my mantra....have faith, believe in your child, he can do this, give him a chance.
If not, we will still be ok, we'll up the tube feeds, and it'll be ok, but there's all the excitement too, I want him to succeed, just stressed, because I don't want to screw things up, and I seem to have a million ways in my head that we could do that.......breathe.