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.