Happy Holidays!

I was at Walmart and told Ty he could have any sippy cup he wanted. Which one? The pink one!! I encouraged a blue of the same kind and he said, "No, dis one." Ryan is so proud. :)
Andrew loves to do things with Tyler. They both enjoy having their baths together. Andrew is starting to think he's to big to lay down, even for washing. They're so fun to watch together!

We got the new button last month!! It is so much nicer than the long tube. We just plug in the extension, feed, and un-plug. We've started using dressings on the site again. For some reason that red spot on the side doesn't go away. If I leave it then the site leak's and the skin gets more red, so we put diaper cream and gauze on it everyday. I still love it so much more than the GJ, although I'm grateful that the GJ was available when he needed it.

Daddy and Andrew at the park.

The family at Peyton's blessing.

Not sure when we'll get a family photo I think we all look good in.

As far as the other events of this month: We had a nice Thanksgiving with my family. We stayed the weekend with my grandma. We'd been off schedule before the vacation even started, so the boys were a little out of sorts with naps and bedtime, but not too bad. Ryan and I still managed to get some games in with the relatives.

Last weekend we were planning on a Christmas Party with Ryan's family. But all of us came down with colds, so it's been postponed. Drew also has his top front teeth coming in, so he was really miserable. He slept or fussed for 3 days straight. No amount of medication seemed to make a difference. Monday was dilation again, but he woke up happy that morning. Dilation went smooth as usual.

Andrew is getting closer to crawling. It's so hard for me to not just give him the toys he's reaching for. I have been working with him some to help him learn the process. It's slow, but I am seeing improvement. I've also been working with him on walking. A month ago he wasn't stepping at all. Now he does little steps. He'll go forward with his right, and then bring the left to match it. He gets tired of it pretty quick still. I think he just needs more muscle in his hips and torso.

He's decided that he no longer likes yogurt. He'll still try anything that we're eating. The problem is that most of what we eat gets stuck in his throat. So baby foods would be the best thing, but he refuses them. Tonight I finally broke out the food processor and pureed the meatloaf I'd made. He really enjoyed it, and ate a descent amount. So I guess I'll start doing that and see what else I can get into him. It's some progress toward tube removal, so it's great.

Tyler is . . . . two. He keeps us going all the time. I'm amazed at how fast he learns how to mimic us. Although I wish he'd learn obedience as fast. He loves to play in the sinks, pretending to wash dishes or using all the soap to wash his hands. He gets into the cupboards and the fridge when he wants a snack or drink. Somedays I keep ahead of him better than others.

Ryan has been working so hard. He's been trying to get overtime while it's available. With frequent days off for dilations and other appointments it means long days. We enjoy the weekends relaxing though.

I had 2 students stop taking lessons last month, but have since got 3 new students. I currently have 14 total. This Saturday is the recital. I'm so grateful to have the income to cover payments on Drew's bills, and like having some other definition for myself than maid and mom.

Although I love the mom part too. If only I had a maid . . . here's to dreaming!

Hope all is well with you and yours.

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.

July- here and quickly gone!

'Hey, you, brother. I would like to taste your shirt.' :)

The boys mostly enjoy each other and are getting to be pretty good at entertaining one another.

Early Intervention (the therapists that come see Drew) brought this Bumbo seat for Drew to help him use his hands more. He rarely tollerates it for even five minutes. When he wants out he lets his whole body go limp and his head hangs back and he just sits like that and cries until I come. This day he did pretty well. I think it's cuz he was on the table, so he could see more. Tyler is the one who really enjoys the seat. He plops in and puts the 'plate' on and is very content.
Tyler is still enjoying Barney, although his new pleasure is "Tractor" AKA Bob the Builder. I usually let him watch while I do the dishes or fix my hair to keep him out of trouble. Although Tyler didn't care about movies at all until a few months ago, Drew is always game for something interesting to look at and music makes it all the better. If I put Drew in his bouncer while Tyler is watching a movie, Tyler will slide his chair over to Drew and always wants to hold his hand.
I've had to get after Tyler for sitting on Drew, because Tyler wants to share Drew's bouncer with him. This week he's started moving Drew's legs so that Drew ends up strattling Tyler. They both enjoy it, so why stop them?

Tyler frequently enjoys infant toys more than Drew.

Drew is really pretty tolerant of Tyler's love. As long as his arm isn't pinned, he gives it right back. Tyler loves it when Drew reaches out to touch him. Drew will swing his arm and touch Tyler, to which Tyler will look at me and announce whatever body part Drew got. "Drew a'face", "Drew a'hand."

Just wanted to get some shot's of the scars for Drew to look back on. This is the site where they went in for both of his surgeries. It's looking pretty good. It doesn't seem to be tender now. I always wondered if it hurt when we'd pick him up under the arms, because I know my C-section site hurt when the tissue was stretched from Ryan picking me up several months afterward. I was careful for a while, but he does pretty well now.

Ahh, these are the moments! Bringing Drew home was an adjustment in the noise level at our house for sure. Most of the time if one started crying, the other followed. The last month they have gotten better at tuning each other out and can even sleep through some length of the other crying.

We moved Drew into a crib in Tyler's room a few weeks ago. The mattress is inclined and he sleeps in a 'tucker sling' to keep him from sliding down the bed. It took a few nights of getting used to, but it's nice now for Ryan and I to have our room to ourselves.

Drew still wakes up once in the night. It used to be about four and he's pushed it back to 5 or 5:30 now. Hooray for long streches of sleep!!

For the rest of July's news:

Drew has still been having his esophagus dilated every 10 days, about. We're going again Monday for #4. It's at 8 mm now. I've asked Dr. Barnhart how many more times we would have to do it, and his only reply has been, 'Several'. It's necessary, though, so we'll keep going until it's done.

Drew's kidney follow-up was last Monday. His right kidney is getting bigger, as it should, to compensate for the other. The left is shrinking, as it should, and will be gone by time he is 5-7 years old. We'll probably have yearly appointments until then.

I stopped giving Drew his erythromycin (antibiotic) a few weeks ago. I felt that it was important for him to have good bacteria in his body, and it was time to move on. He had been on that for the side effect of his stomach emptying faster. I really wanted to make sure he was still comfortable though. I searched and searched for natural helps, because the only other medical option I had was Reglan, which is not intended for long term use and Drew needs long term solutions. He did pretty well initially, but as the days went on he was starting to reflux more and more. Finally after praying and thinking about it, the idea came to start feeding him through the tube in his belly. I knew that his stomach only held a teaspoon when we left the hospital. I also had been told that mixing his formula with rice cereal would help it stay down better. So I started with just less than a teaspoon of rice and formula. Immediately I noticed that he was able to cough and yawn without gagging. That was amazing because usually coughing, yawning, and sometimes sneezing would send him into gagging spell. Any of you who have witnessed one spell know how hard they are on him, so it was amazing to see it stop.

After three hours the magic seemed to have worn off, but he had not thrown-up, so I did it again. Again magic. So now I feed him into his belly almost a teaspoon every three hours. He is so much happier!! And no more medication required. (He is still on prevacid, and will stay on that for a long time probably.)

Drew is now off his morphine and we're weaning ativan. The morphine wasn't so bad once I took it slow. The ativan is tougher on him to wean. He's been fairly irritable with this last decrease. I even tried to back off and give him a few extra days on the bigger dose, but when I went down again the fussiness came back. I hope it will just be a day or two, and then he'll settle down again.

Overall I'm really pleased with how Drew is doing. He is a very pleasant baby and cute as can be. He jabbers, "Da Da Da." now and is very good at blowing spit bubbles. He also laughs occassionally. And he's very close to rolling from back to front. He just needs more opportunity. It still irritates the reflux more than he'll handle to be flat on the floor too much, but he's getting better.

Tyler is learning so fast!! He climbs anything he wants now, and comprehends so much of what is going on around him. You never know until they can say it sometimes. We were in the car and turned on to Main Street today, and from the back seat I hear, "Get mail?" Yep, we were headed to get the mail. (The post office doesn't deliver mail down here.)

Ryan is working crazy hours most days to try and keep up with having one day off most weeks to go to Dr appointments with us. I think we're both more tired than we've ever been, but we're so happy to be together and have our little boys.

I was released as YW 2nd counselor last week and put in as the Beehive advisor. So now instead of doing the activities for the girls, I teach the Sunday lessons. I'm so glad that I can still be with them, but relieved that it won't be such a time requirement.

We see the Lord's hand blessing our lives continually still. I am more and more amazed at the power of prayer and the Priesthood.

Summer is here!

When I asked Ryan what he wanted for Father's Day, he said he just wanted to go up the mountain and have dutch oven dinner with his family. OK, so I should probably add that I had an 'I hate Emery County day' the last time he wanted to go up the mountain. Poor guy. Anyway, so Drew had his first trip into the wilderness on Saturday. Tyler is so much like his dad and loves the outdoors. He honestly loves to play in the dirt. No shovel or bucket required. We did take his dump truck and 'bike' up this weekend and he had a blast. Our new challenge in taking him this summer will be keeping him out of the fire it seems. He's all boy and was fascinated by the flames. We'll be keeping a close eye. Drew preferred to sleep in the truck. He was having an off day because of the procedure he'd had done the day before.

June 22 was our follow-up with Dr. Barnhart, Drew's surgeon. He first had an esophagram, which is a test under x-ray to see the esophagus. They wanted him to suck the dye from a bottle. I informed them it wouldn't work. So the tech thought maybe she could just drip in it and he'd swallow. No. After he aspirated (inhaled the fluid into his lungs) they decided they'd have to put a tube up his nose and down into his throat. Of course, Drew has been screaming during the 5-10 minutes that all this has happened. Once they got the tube in and the fluid down the tube it was very clear that Drew's esophagus had almost closed off. Scar tissue naturally shrinks and so the site where his repair was he could barely get fluid through. The radiologist couldn't get the small tube to go through the narrow part at all.

Dr. Barnhart said that Drew would have to have his esophagus dilated 'several' times. I'm not sure what the ball park number is at all, but we've already started.

He had his first one done on Friday. They put him to sleep for the procedure. Then they slide a guide-wire down his throat past the narrow part, while they use a tiny camera inside to see. Then they slide a tube with a balloon at the end over the wire. When the balloon is in the right place they fill it with water to stretch the tissue. It only took 45 min. from the time the anesthesiologist took Drew until they call me and said it was done. They expected up to an hour before he would wake-up, but the nurse told me he came out of the OR screaming. They had to watch him for another hour just to make sure he didn't have any problems from the dilation or anesthesia. Then we had another esophagram to make sure that the esophagus hadn't gotten a little tear from being stretched. Drew hated this one even more, and as his mom I hope that we never have that radiologist again. Course, I also will be prepared to stand up to him and demand compassion if we do. Anyway, we'll be going up about every week it sounds like to for dilation for a while. Our next appointment is July 6th. I am still amazed by Drew in all that he has gone through and continues to experience. He still is so happy.

Drew is doing well otherwise. He is definitely spitting up more now, and that's not so nice for him to have to go through. He doesn't simply spit-up he wretches and heaves several times usually. He also has thrush and yeast on his bum as a result of the anti-biotic he's on, but we have medicine for that now.

Drew is 14.5 lbs now. We're up to 42 cc's an hour, 22 calories per ounce, for 22 hours a day now on feedings. (That's about an once and a half an hour, and high calories than normal formula). We'll go up to 47 cc's this week. He's mostly on formula now as well. I found out through many, many phone calls that because he's dependent on tube feedings his formula is covered by insurance. I am so grateful because pumping was taking a lot of time and extra work. I still pump morning and night, partly because I'm weaning him onto formula and me off pumping, and partly because I'm hoping that it will help his immune system. Twice a day is much nicer than the seven I was doing when he came home.


Tyler is mostly enjoying his little brother now. He tries to pick him up and wants to hold him quite a bit. He still gets jealous when we hold baby Drew sometimes, but it's not as extreme as when we first came home. Tyler's latest hobby is watching Barney. I limit how much he can watch, but he asks several times a day. "Watch Barn? TV 'mote." It's amazing how fast he learning and how much he comprehends now. He's also been saying, "I want. . ." and "I need. . ."

Ryan and I are doing great. We're adjusting to living together again, but mostly really enjoy each other. Ryan has another two months of softball. He just plays two games on Tuesdays, but it's something he really enjoys.

I'm back teaching piano. I am not sure when I'll ever feel like my house is in order again. I chip away at it day by day, but there are so many other things to do. I've started working back into my YW calling. Girls Camp is next week. I'll probably just go up for a few hours on a couple days.

I think we're all starting to settle in.

It's been going pretty well the last week or so. Drew has really improved with his developmental skills. He is getting better at grasping objects and moving his hands to reach them. He's also getting better at bearing weight on his legs. We've been told that the more muscle he gets in his torso the better his reflux will be, so I've been trying to give him more opportunity to lay on the floor and roll side to side or to be upright and working toward being able to sit. He really likes playing in the jumper. I'm not sure what the triggers are, but today Drew had a hard time with his reflux. He wretched and gagged more than he has for a few weeks. He would still smile, but he mostly wanted to sleep to avoid the discomfort. He had the saddest whine tonight. It wasn't even a cry, just wimpers. Hopefully he will get past it, or I will be able to prevent it somehow. He has a really hard time getting comfortable at all when he's had days like today.

Tyler is liking his brother more and more. He still gets jealous of me holding Drew and sometimes playing with him, but more and more he just joins in the play. The other day Drew had fallen asleep while playing on a mat on the floor. Tyler had been fighting his nap for several hours, but finally laid down by Drew and crashed. They were SO cute!! I stopped letting Tyler have his bink last Friday. He's asked for it a few times, but has done pretty well. I thought he'd have a hard time letting go and especially sleeping without it. I've started laying by him to get him to go to sleep and he's been fine.

Ryan has been just doing his thing. Work, home, sleep. He plays soft-ball on Tuesdays with a team from work.

Tomorrow I will start teaching piano lessons again. All of my students wanted to start again, so I will have 15. It is a blessing that I started last summer, because it's going to make it possible for us to handle Drew's medical bills.

We got the itemized bill from Primary Children's last week. Their grand total is a few dollars under $515,000!! That doesn't include x-rays being read, surgeries, anesthesia, or his birth. Thank goodness for insurance.

I maybe should have written before now, but here it is now:
We're home!! Drew was released on Friday, May 29th. He was on continuous feedings for 22 hours a day at 34 cc's an hour, 24 calories per ounce. (Normal is 20 calories. He has more so that he doesn't have to have as much volume). He was also on prevacid for the acid in his stomach, ativan to help him be calm, and morphine because he hadn't weaned off the pains med completely. I weaned the morphine some, but it was not pleasant, so we're just going to let him outgrow the dose now.
When we got to my grandma's on Friday it was time to give his prevacid. I'd been warned by several nurses that it was famous for clogging tubes, but hadn't had a problem in the hospital. We'd been given a pill to dissolve and then put through the tube into his intestine. Well, I clogged the tube. Fortunately we were able to work it back out. Things went really well after that. Drew was happy, and actually stayed awake most of the day!! He slept awesome and didn't wake up in the night at all. I still have to wake-up to refill his pump, but that's ok.
Saturday I went to give the prevacid and once again clogged the tube. We managed to pull it back out, but when I tried to re-give the med it clogged again. This time I tried and tried and tried to unclog it, but instead ended up blowing a hole in the tubing outside his belly. So we took a ride back to Primary Children's and had a new tube placed. I tried to give Drew the pill by mouth later that day, but he spit it out.
Sunday I tried to put it into the tube into his stomach, but he threw it up. Sunday night we made the drive home. We stopped along the way to see Ryan's family.

Monday morning we had a doctor's appointment. Drew weighed in at 13 lbs! The doctor gave me a prescription for liquid prevacid. It costs 4 times the amount the pills do, but is better than clogging the tube daily. I haven't had a problem with it since.

My mom came down Monday night to help me out for a few days. Drew slept most of Tuesday and was up all night. I had weaned his morphine Monday, and I think that not having the right doses of prevacid had caught up with him and he was having heartburn. Things got better after Wednesday. My mom had helped me organize my house some, and although I didn't know how I would manage both kids and the house alone I was on my own. Thursday went great. I had both kids and myself dressed, the dishes done, and laundry started by 10am!! (Uh, did I mention that one or both of my kids wake up before 7 am daily now. Usually it's closer to 6 when I force myself out of bed. Neither of them woke up much before eight prior to coming home. I've been exhausted!!) Drew was still more fussy than he had been in the hospital, and I was having a bit of a time dealing with it. Friday was pretty smooth, but Drew was more fussy. By early (I mean about 2 am) Saturday he was screaming and inconsolable. Saturday morning I realized that his G-tube site was infected. We made another trip to the doc and got the antibiotic.

By Saturday night I was sick and had the flu. Ryan wasn't feeling so hot either. We spent most of Sunday taking turns sleeping. Yesterday I was still not feeling well, but was a little better.

Today has been so good. Drew is so much happier than he has been the rest of the time we've been home. Tyler is playing with him and mostly enjoys Drew. He gets a little jealous if I hold baby Drew for long or if I use 'Tylur's blank' for Drew.

Drew has taken to putting his first two fingers in his mouth, but hasn't done much sucking. Today I heard him smacking, and put his pacifier in and he went to town on it!! He sucked for at least 10 minutes and didn't gag at all!!

I also put him in the jumper today. He hasn't been weight bearing on his legs much, so I thought I'd try that to inspire him. It took a few minutes and three blankets to prop him up in it, but he caught on and really enjoyed pushing off. So much that he had a blow-out in his clean clothes! :0 That's babies for ya. He hadn't gone since Saturday. Tyler's record was more than a week without pooping.

It's 3 pm and I am still not dressed and the only thing aside from the necessities of chores I've done is get a babysitter so I can go to the dentist in the morning. I've played with my kids and we've had an awesome day. Drew had smiled at me today. I've only had a two or three smiles from him the entire week before today. He's happy, and Tyler is busy and helping me like usual. Who cares if I didn't get dressed yet or the house clean.

HERE WE COME!!!

Drew will finally be discharged this Friday!! We have an awesome team working with us, and they've made it all possible for us. He'll be on continuous feedings through his GJ tube; aside from 2 hours a day that he'll get to have a break. He's also still on a few medications. The prevacid he will be on for at least a year, but the other two we can wean after we're home.
Somehow all of us overlooked his immunizations, so he got three shots of them today. He also got his central line removed, which was not pleasant in anyway, but at least he's free of that.
We're planning on staying at my grandparents for a few days and going home to Huntington Sunday night. Ryan will be up Friday morning. We are so excited to be able to be together and have BOTH of our little boys with us!!
There are still things to work on and lots of Dr appointments in our future, but Drew is doing great. He is very happy most of the time and it's been an amazing journey with him so far.
I cannot sign off from this experience without acknowledging our Father in Heaven and the many blessings we've been given through this time. Words could never express my feelings completely. I know that we are all children of our loving Father in Heaven. I know that we are here on this earth to gain bodies and to learn so that someday we might return to Him and become like him. I know more and more of the power of the Atonement of our Savior, and am amazed. I know that there is a plan for me and each of my children, and hope I can become the daughter that the Lord would have me be. I am grateful for this experience and especially for all those who have been a part of it with us.
A special shout-out and thanks to our Primary nurses: Sarah, Laurel, Whitney, Tristen, and Gail. Thank you so much for your love and care for Drew. Your touch and care are appreciated so much. We've had a great team of Dr.s, nurses, NNPs, dieticians, and the surgical team. A big thanks to Dr. Barnhart, Drew's surgeon, as well.

Andrew is doing great! He is at full feeding amounts now and has only a little bit of IV nutrition that is necessary to keep his line from clotting. They will probably switch the two medications to oral versions and remove his line tomorrow. He is so close to going home that they don't want to risk having an infection from his line. (He's already had two infections from lines.) As you can see he is a very happy kid. He loves having familiar faces around. He behaves best for his primary nurses and his mom. This morning he was very fussy, but when Mom came he was just fine and started smiling at everyone again. He is still on fentanyl (pain med that we're weaning), that is currently given every 3 hours, and ativan (which helps him be calm), every 12 hours. He can come home with the ativan, but we'll need to get rid of the fentanyl. The plan is to stretch the amount of time between doses every-other day. He still spits up, but not as much or as often as he was last week. We're working with him to decrease his gag reflex as well. He even took his pacifier twice yesterday. He did eventually gag and wretch because of it, but he liked it while it was in. That's huge progress for him to have in it at all since surgery.

Tyler spent last week in Ferron with Ryan. I missed him so much and was happy to have him with me again Friday. Grandpa Mel heated the pool and we went swimming!! He loved it as long as Grandpa or I held him. He didn't like when we tried to put him in his floater. He really liked watching other people swim and trying to splash them. He would giggle every time he got splashed and when he tried to splash them back. He's also learned to sit on the edge of the pool to put his feet in. He loves it, although it makes me soooo nervous. He's really not afraid of much, and will try everything. Good luck to Ryan and I keeping track of him this summer. :) He runs very well now too.

Hopefully Drew will be discharged one of the first days of June. I'll probably stay north for a few days for my family to see Drew and then we'll finally ALL head HOME.

Home soon!!

Drew has still been struggling with terrible reflux. His stomach is very small and he's not been able to handle the extra volume needed to stretch it. We had a test done this week to see how big the stomach is and how much reflux he had. After looking at the results our surgeon decided that he was in need of another surgery to stop the reflux, but his stomach is too small to do the procedure. So Drew will be getting a GJ tube put back in (a tube into his stomach that has an extension to his intestine), hopefully this afternoon. Then he will start getting fed straight into his intestine and once he's weaned off his pain med we can go home!!
He will be fed by a pump into his intestine, but we can also work on feeding him by mouth while he's home. Then when he's bigger and his stomach is bigger he will have the other surgery.
The surgery is called a fundoplication or nissen. The top of the stomach has a piece higher than where it meets the esophagus, and they will take that piece and wrap it around the esophagus and sew it to itself. It will stop his reflux. The down side is that he may not be able to burp and he will not be able to throw-up. The surgery is non-reversible. But Drew will be much more comfortable and will be able to grow and develop normally once he can hold his food down, so it's best to have the nissen.
We're not sure how long it will take to wean the pain med because it all depends on how Drew tollerates it being taken down, but hopefully not more than a few weeks.
Here we come!!
Tyler turned two yesterday. We just had a small party, but Tyler really enjoyed it. I sang Happy Birthday to him when he woke up in the morning. He went upstairs to find Grandma singing, "Happy you. Happy you." He is amazing, and so cute.

Tyler and I went home again this weekend for a few days. We took Tyler to the park Monday night. It's amazing how fast he is learning and growing. He's always been somewhat fearless, but it's getting even more so lately. He loves being outdoors.

Drew is making progress. It feels very slow for Ryan and I, but slow is good for Drew. He's up to 14 cc's an hour on continuous feeding, which is about half of what he'll need. He's also cut his pain killer dose by half and continuing to wean every other day. He's been much more alert and pleasant without so many drugs in his system.

He still hasn't been very interested in sucking. The therapist and I have been working with him, but with minimal success. Today Kiley got permission for us to try breast feeding to see if he'd be more interested in sucking. He took to it very well. He only tried for a few minutes before he fell asleep, and ended up spitting up because of the extra fluid in his stomach, but he enjoyed it and we're so pleased that he did it. We'll keep working on that. The plan is to continue decreasing meds and increasing feedings through the G-tube and work on oral feeding. We're hoping for just a few more weeks.

Food

Drew passed his esophagram this morning!! Which means he has healed enough that his esophagus doesn't leak, and he can have food. He got to have his crib back today. (He's been in a warmer for the last week). And they pulled the tube from his nose. He is currently on 4.5 mcg/kg/hr of fentynal, which is his pain med. He gets ativan every 6 hours and started prevacid today.
I helped give him a sponge bath this morning and he cooed at me quite a bit during that. Afterward, though, he was pretty tired. He slept a few hours, and then we were given the go ahead to try and feed him by mouth. His care team and I were so excited!! We got him out of bed and this is how is first attempt at feeding went:

So we decided to let him rest some more before trying to feed him. The surgeon came and talked to me and said that he should start back on G-tube feedings, starting at 4cc/hour continuous and work on oral feedings when he's up to it. We tried to feed him again, but he didn't want to even suck on his pacifier. Probably his throat and chest are too sore still, so he is avoiding using those muscles. We'll try again tomorrow. Once he's done well from a bottle a few times, to make sure he can suck AND swallow, then I can start trying to nurse him.

He will have his chest tube in until he is getting half of his full volume for feeding. That will probably be Wed/Thurs this week with the G-tube.

He'll slowly be weaned on the fentynal as well.

His requirements for going home are the following: maintain body temperature-done; maintain oxygen saturation-he's on oxygen for now, but will probably be off in a few days; take full feedings; and gain weight.

Progress

Andrew spent all week paralyzed with medication. The nurses watched his heart rate and blood pressure for signs of pain/agitation. Because of the effects of surgery and not being able to move he swelled a lot!! From Monday to Thursday he gained more than one and a half pounds!! Friday the surgeon gave the go ahead to let him wake up. We expected only a few hours before his toes and fingers would start wiggling, and for him to start breathing over the ventilator. They stopped the medication at noon and by six o'clock nothing had happened. Finally I started to rub him to see if I could stimulate a response, and found that if I rubbed the bottom of his feet he would move his toes. By 9 pm he had started breathing a little. Yesterday he was able to move, but would only do so if you touched him. They weaned the ventilator some, and Andrew met every decrease by breathing more on his own. Last night he opened his eyes for the first time.
This morning he was extubated (no longer on the ventilator), and the swelling has reduced dramatically. He's had some fluid in his lungs, due to surgery, and now that he's awake it's starting to loosen. While on the ventilator they were able to deep suction the fluid from his airway, but now they cannot for fear of getting the tube into his esophagus and disturbing the repair site. He was having a hard time with all the fluid this morning. Being intubated makes your throat very sore and he has the pain from surgery, so he doesn't like to cough or even cry. The respritory therapist will be working with him today to encourage him to cough when his airway gets too full, and hopefully he'll have it cleared out tonight so it won't be so hard on him.
Tomorrow he will have a dye test to check if the esophagus has healed enough to prevent leaking. If it goes well he will start feedings into the G-tube. Dr. Barnhart said we could start trying by mouth, but I think I'll ask them to wait becuase he is so sore still. If we tried now I think it would not be a pleasant experience for him.
It's difficult to see him struggle and have to deal with so much discomfort, but we know that it will get better from here and this was the only way for him to truely thrive and be able to come home.
Sorry that the website hasn't been letting you post comments. I'm not sure why, but went through all the settings so hopefully it will be better now.