Already November!?!

Well, Tyler did finally put on his costume when I told him that he could get candy if he did. He also really liked me putting makeup on him. He's always trying to get into mine.
We went trunk-or-treating at Grandpa Mel's. He didn't catch on to the trick-or-treat part, but got busy with eating the candy once we were done.

Mom is about done with trying to potty train until after Christmas. It's been several weeks now, and he's still not making it to the bathroom. He's started taking care of it himself when he goes in his unders. He'll go in the bathroom and take his underwear off. If it's #2 he'll dump it in the toilet as best he can. Then he gets out a new pair of unders and brings them to me.

Almost always he sneaks away from me to go now. The other day I caught him wet and said, "Did you go potty?" and he said, "Uh huh." When I asked where so I could clean it up, he said, "In my room." Yep. Puddle on the carpet, but he'd closed the door after leaving. Saturday we went all out and gave him tons of pop, and then tried taking him every twenty minutes. That just resulted in a lot of pee all over my house, and one wired kid.

I have just put him in pull-ups today, but once we got home from church he went in the bathroom, took off his pants and pull-up and brought me underwear to put on him. Not sure what I'll do from here.
Drew is still making good progress. His occupational therapist came and worked with him this week, and he really took off with rolling. He will stay on his tummy to play now, cuz he's confident that he's not stuck there, I guess. Hopefully he'll work to crawling before too long.

Not much has changed on the food front. It's time for me to get more serious about daily therapy with him. I'm pretty sure if I mess with the textures of things he'll come around to baby foods. He is definitely interested in more solid types of foods. We run in to problems almost regularly now of him getting food stuck in his esophagus now though. With the narrowing from scar tissue, and the lack of nerve and muscle connection, he gets little pieces of food caught there and has to work to throw it back up. So soft foods would really be better for him.

I haven't increased his stomach anymore, because he's still having a lot of reflux symptoms and I don't want to irritate that anymore. We're at a happy place for now though. Still 4 ounces, 5 times during the day, and then we run the pump at night.

The change that will happen is that Drew is getting the G-tube button tomorrow. He has dilation again, and the surgeon said he'll just change it out while he's in the OR. It is kinda painful, I guess. But Ryan and I are so excited to not have the long tube anymore!!

Drew has still been a little sick since his last flu a few weeks ago. Thankfully he's not really bothered by it. Just some coughing when he sleeps. Poor kid seems to be sick all the time, but hopefully his immune system will get strong and catch up.

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.

Ready for Fall

I can't believe it's already been another month!! Time is passing so quickly. Hopefully I can remember all the news to catch up on.

The boys are doing great. I've started to wean Tyler from his pacifier. He only has it for sleeping now, for the most part. He still doesn't let it go easily in the morning, but he does ok. When I say to him, "You ready for a nap?" He'll reply, "Bink?" and run to the shelf where I put it. Once he has it, he runs down the hall to his room and lays on his bed. He's really good about naps and bedtime. He'll even ask for us to put him to bed sometimes. During the day he stays very busy. His favorite things are still appliances, especially the vacuum.

Drew has had a few dilation's this month, as usual. We've been trying to get him in to see a speech therapist, but the wait is long for an appointment. When the time finally came he was sick again, and we had to cancel. We've all the the virus that's been moving around. Hooray for flu season! Drew had quite a time with all the mucous, and had a really rough week at first. He slept and cried for several days. It's been two weeks since then, and he's back to his happy playful self. He still has some rattling with breathing, but he doesn't mind it.

Drew is still working on sitting, and is actually pretty close to being able to be left alone to sit. He also started rolling back to front last week!! So now he rolls both ways.

As far as food goes we're definitely making progress. Drew now really enjoys toys in his mouth. He loves to suck on any one's finger. He's also starting to enjoy taste. So with the encouragement of Early Intervention, I dipped a wash cloth in formula and let him try it. He enjoys sucking on a wash cloth in the bath, so that's where the inspiration came from. He really liked it.

So since he's had such a strong desire for oral stimulation and liked the formula, I decided to make the step to try a bottle. Monday night was our first attempt. For the most part he just chewed on the nipple, but he did manage to get 4 cc's in. And rather than choking or spitting, which I thought might happen, he swallowed and kept on going!! It was very exciting. (There are 5 cc's in a teaspoon.)

Tuesday night I tried again. This time he did much more sucking, although still mostly chewing. He drank 15 cc's, though!! That's half an ounce, or 3 teaspoons!! I've been stretching his stomach slowly, by giving him feedings into his stomach. His stomach now holds just more than an ounce (30 cc's). We started at 3 cc's, so that's awesome! My goal is that by Thanksgiving we'll be able to give him food in his stomach (by tube and/or by mouth) during the day, and only run the pump at night. If we could run the pump into his stomach that would be awesome too. For now the pump is running 20 hours a day into his intestine.

We also had the joy of the tube cracking last week. That's the first time we've had to change the tube since we've been home, home. (I broke it the day after we left the hospital, but we were in Sunset.) So Drew and I made an extra trip to Primary Children's to get the new tube put in. Hopefully this one will last us until we can switch to a plain G- tube button. For now it's a GJ tube.

My grandfather also passed away this last month. We stayed with my grandma this last weekend, and it seemed so strange for him to not be there. I'm so grateful for his life and example. He was an amazing man.

Thought I'd also share this picture of Drew with his triplet cousins. Imagine the family parties when they're three!! :)

Drew has always been a little congested, but it got pretty bad when he had his cold a few weeks ago, and hadn't improved as much as I expected afterward. In talking to my mom, I learned that her side of the family has a tendency to be congested as a result of milk intolerance. This first movie is what he sounded like when he woke up at 4 am tuesday. This is not out of the norm for him. Then he coughs/spits up mucous and is fussy until at least 10 every day. Once he's cleared himself, he's a happy kiddo.

So I decided to try soy formula for him instead. I expected a couple days to see a difference. The doctor told me I should see a difference within a week, if that was the problem. This is the difference one night made for him: (After a good night's sleep.)

Hooray for new formula!! He has not had a morning like this since we've been home!! He used to be miserable all morning. Today he has played and talked and been so happy!!

Plus we're off ativan completely now! What a week.

"Normal" life

Drew has really made progress lately with his motor skills. He likes being in his saucer now, and jumps and spins to get other toys. It's really nice to have a way he can entertain himself. He also is able to lay on the floor without puking now, and has been playing and rolling side to side. He rolled over onto his belly at Grandpa Steve's yesterday. Ryan and I missed it, but we're glad that he's gaining new skills.
He had dilation again last Thursday. He seems more miserable every time we go. He was fussy for three days afterward this time. I asked Dr. Barnhart if we could maybe go longer in between, but he said it probably has more to do with the amount they dilate. So it should get easier from here, because we're at the full diameter. We just need it to not shrink now. So we're scheduled for Sept 4. Drew is now 16.5 lbs!!

We went through hand-me-downs last week to get out fall clothes for Tyler and the next size of clothes for Drew. Tyler found his boots from last year, which he loves. I bought them a little big, so they still fit, and he's been wearing them a lot since. He's such a funny kid. He also found a shirt with a fire truck that he loves, and a few with tractors (which is the word for tractors and all construction machines). So now we have somethings to alternate with his dinosaur jammie's.

The archery deer hunt started last week, so Ryan's been getting his fill of time out in nature. Tyler asks where he is all the time. He likes it when dad takes him for rides on the 'wheeler'.

The boys are starting to play together more and more. Drew smiles at Tyler quite a bit. Tyler really likes to get in Drew's face and talk baby-talk. He's also started taking Drew's toys, so now we're learning about sharing. They are both a little jealous of the other having time with mom. If Drew starts crying, or sometimes if I'm holding Drew, Tyler will come climb on me to get his attention. Drew has also started to object occasionally to my paying attention to Tyler while he has to sit and watch. Poor kids. Sibling rivalry already.

Overall things are going really well. I'm looking forward to the cooler weather of fall, and hopefully relaxing into life a little more.

Sickies

I decided to make a little sand box in a section of the rock garden in front of our house. We went out to the desert and found some nice sand to put in it. Grandpa Steve, Grandma Shell, and Savanah went with us, and they got some dirt as well.
Sadly, there was a wind storm and all of our sand blew away. Guess we'll go get more and make some sort of cover this time.
Saturday we went to Grandma and Grandpa's and Tyler and Savanah had a great time making mud and playing in their sand.
Drew had been fussy even before this last dilation, but it got even worse for a few days after. I was getting really frustrated trying to figure out what was bothering him when I got a sore throat! Within a few days Tyler had a gooby nose and we've all been a little congested, except for Ryan. Hopefully he'll make it by without getting sick. Drew has been feeling a little better.
He also started spitting up EVERY time I feed him after dilation. Then he got really gaggy again. Wondering what to do, I stopped feeding him into his belly. That helped him for a few days. Then he got gaggy again, so I started feedings just 3x a day. Now we're back up to every 3-4 hours.
My theory is that he just need something to move the gastric juices through. I'm not sure why it made him worse those few days, but I'm mostly just relieved that he doesn't have to be heaving all the time. It's so hard on him.
I can see little dimples in Drew's lower gums, so he'll be getting teeth soon I think.
I have started giving Drew little drips of formula by mouth. The other night I had him suck on my finger while I dripped it. He caught on to the fact that when the plastic touched his lips he'd get formula pretty quick and started whining a little when I'd try, but he did swallow it very well. Today I thought I'd try something different. So I got a dab of yogurt and dipped my finger in and put it on Drew's lips. He was pretty interested and let me give him several tastes before he let me know he was through. I am so excited that it went so well!! We've also been working on sitting and standing (standing in my lap with my hands under his arms). I still have to give him almost complete support, but he really enjoys it and will get better over time I'm sure.
I have been so busy with everything else that I hadn't taken much time to just play with the boys. I had a few days last week that I took the time to entertain them for a bit. I had a great time and so did the boys. My new plan is to make sure that I take the time every day to give them some one-on-one or one-on-two playtime. I had forgotten how important that is, and am grateful for the little reminders. Childhood goes very quickly.