Keep on Going!!

Andrew is really enjoying his bottle. He still only drinks about 2 ounces in a good feeding, but we're happy for anything he'll take by mouth. He still rejects baby food, and is going through a spell that he doesn't like any soft food. He gags as soon as it hits his tongue, but hopefully he'll get over that with continued exposure. He does like to try cheerios and graham crackers, so I let him eat that while we eat our meals sometimes. He demands to be at the table and have some food to work with whenever we sit down to eat.

We've made some pretty big changes in his nutrition lately. We're up to 4 ounces into his stomach at a time. I offer that in the bottle first, and then whatever he doesn't finish (which is usually just over 2 ounces) I put through the tube into his stomach. At the recommendation of a few of the professional team Andrew sees we stopped running the pump during the day. So now I turn it on about 8 pm and let it run until 8 am.

Math: Andrew gets 5 feedings of 120 cc's (4 oz) during the day. The goal is 1000-1250 cc's per day. So he gets 500 cc's continuous through the night, or 41 cc's/hr.

The biggest change, and most significant, was a bit scary for me to do. I knew that at some point we wanted the night feed to go into his stomach too. (It's still been into his small intestine). I didn't know how to change it though, short of just doing it and risking that he wouldn't tolerate it. That probably would have ended up with a puking kid. Not so major, but I didn't want to put him through that. So I thought for a few days, and asked around, but still didn't find any other options. So finally I decided that if he could handle 120 cc's at one time and his stomach could empty that in an hour (I've checked and it does), then he should be able to handle the 41 cc's/hr at night. The first night I tried it he woke up at 10 screaming. I couldn't figure out what was wrong, so I switched to the J tube for the night. The next night I just went for the J tube, and again he woke up screaming. Turns out he was getting a cold, and was just congested. So Monday night I tried again. And- IT WORKED!! I actually ran it at 45 cc's/hr and he did just great. Even with a cold! (Reflux kids have a harder time with feeds when they are sick). So we are on our way to a G-tube button. No more long tube. No more having to drive to Salt Lake to get the tube replace when it clogs, breaks, or gets pulled out. HOORAY!! The other major benefit of not having pump feeds through the day is that Andrew is starting to learn hunger. He hasn't had that for most of his life, so he's still learning what that feeling is and that eating will make it better.

I love giving him a bottle because it makes me stop and spend time with him. I feel like we're catching up on the bonding we missed from not nursing when he was born. Not that he has really missed out. He is a momma's boy, through and through. If I walk out of the room, or if he thinks I'm leaving him he will cry and cry until I come back. Separation anxiety. It's good for my ego. :) He'll get over once he can move on his own I'm sure.

Tyler has been even more busy than usual. Ryan asked me the other day, "Do you think he's hit the terrible two's?" "YES!!!!!!!!!!" He drags his chair all over the house now and gets into EVERYTHING. He is constantly two steps ahead of me. He loves to play in the water in the sink and make soup. This picture, I don't know how he got so much water to the stove, but Ryan and I were watching TV in the other room, exhausted, and when we got up to check on him he had put a pot of water on the stove, thrown in some cinnamon sugar, and was pouring it back and forth and stirring it. He was so proud.

We've also been working on potty training. No success yet. I think it just needs more attention on my part. I did buy a Barney DVD yesterday, that he's not allowed to open until he goes potty on the toilet. He is making progress with recognizing when he's going. I'm sure it will happen before too long.

Tyler is obviously very excited for Halloween. (He doesn't know about the candy part yet). This was the first time I'd tried his costume on. We went to a party last week and I ended up with the same result. He worn jeans to the party. Tonight is the primary party, so I'm hoping now that he's seen other kids in their costumes he'll be more into wearing his. We'll see.

Oh- I'm also planning to make the blog private sometime within the next month, so if you want an invite please email me to let me know. rmchirstensen3@yahoo.com Thanks.

Miracles

Andrew has really made progress with his oral aversion! And what is he eating here? A wad of rice crispy treats that didn't turn out so great, but he really enjoyed it. He loves to try whatever we're eating now. Most of the time he likes it, as long as you start with it on your finger. He's not big on spoons yet, and we only give him tastes of things. He doesn't eat enough to count as nutrition.
A few days after I posted last he caught on to the bottle and has done great with it!! He has off days, but most of the time will drink most or all of what I offer him. It still takes him a very long time, relative to other kids his age. It takes 20-30 minutes for him to drink 2 ounces.
We finally had our appointment with the Dysphagia clinic last week. (Our NICU therapist scheduled it before we left the hospital and the wait was this long). We met with a GI Dr., a speech therapist, dietitian, and psychologist. They were all amazed with what we've been able to do. When we told them that he'd been gagging and heaving for several months, they were even more amazed. Dr. O'Gorman said that kids who gag and heave like that have a really hard time with oral things. Andrew likes his bottle now, and will reach for it and put it in his mouth when he sees it.
The team recommended that we try to stretch his stomach 5 cc's a day, which is a big jump from the 1cc I had been doing. He's tolerated it very well. He sometimes seems a little uncomfortable right after I add volume through his tube, but it resolves pretty quickly. We're currently at 66 cc's, which is just over 2 ounces. For every 1.5 ounces we increase, we can take an hour off his time on the J feed with the pump. So if everything goes very smooth, we'll have him on the pump at night only about Christmas time. That will be awesome for him, because I expect that he'll be crawling before then, and you can't get very far attached to a 4 ft tube. :)
So far he's not throwing up, or even spitting up AT ALL!! I still hear the reflux sometimes, especially with tastes of our food, but he doesn't seem bothered by it.

Drew adores Tyler, and Tyler loves playing with Drew. The other day we were driving and with Drew still rear-facing, they were looking at each other and taking turns making the other laugh.

Drew is also sitting well now, which has made him a lot happier. He will sit for long period of time and be very content as long as he can see me. He still has big time separation anxiety, and will cry as soon as I say, 'I'll be right back.' or when he realizes that I've walked out of the room.

This month should be much slower for us. We only have one trip to Primary's planned vs. the four we made in Sept!! I'm really looking forward to the free time.