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.