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.