Settling Down?

Daddy spiked my hair!
Ty loves these jammies and always wants them both to wear them. They like to play with Dad's hats too.

Tyler and Andrew both really like books. Tyler will occasionally read to Andrew.

They're so cute together!

Tyler's new smile. He had a good fall last month and completely knocked out one of his teeth and chipped two others. He looked beat up for a few days, but is getting along fine without the tooth now. He'll just have to wait until the adult one comes in.

Well, the last month has been much busier than we anticipated. On Jan 18th, Drew went in for dilation. We've gotten pretty used to the process, at least I have, and don't think too much of it anymore. Ryan went with me this time. On the drive up there I kept feeling like this time was different, but ignored it as just wandering thoughts. I was wrong.

Things went the same up to the point that I get to go to the post-anesthesia unit and be with him after the procedure.

Usually when I get onto the unit I can hear Andrew screaming. That day he was quiet. When I got to his bedside, he had oxygen going and his breathing was very rattled. The nurse was on the phone explaining to another nurse that Andrew had refluxed during the procedure, and inhaled his bile into his lungs. (This was a shock to me, because the surgeon had just told me 20 minutes before that things had gone well, and hadn't mentioned anything of this. Maybe it happened after, I don't know.)

When the nurse got off the phone she explained more to me and said that we would have to stay at least 4 hours for observation. They were concerned that he would develop pneumonia, and wanted him off oxygen and doing well before we went home.

Andrew did great once he woke up and was off oxygen. We were about ready to go home when he fell asleep again, and his oxygen percentage dropped. He had to be back on the oxygen to sleep. When he woke up again, he did even better than before. He dosed a little more, and was holding his own. By this point we had been in recovery 8 hours. Ryan and I were very ready to go home, and confident that Andrew would continue to improve. I let the nurse know that we were ready to leave. She was hesitant, but with the approval of another anesthesiologist we went home.

Andrew did fine the first night and the next day home. When I was putting him to bed the next night though, I noticed he was breathing VERY fast. I counted, and he was breathing about 65 breaths per minute. I called Primary's (by the way we're talking 11pm by now) and the nurse said that 40 breaths was fast, so I better take him to the ER.

So I bundled him up and off we went to the hospital in Price. Of course, it was snowing and the roads were covered, but with my heart pounding, we made it there. I unbuckled him and realized that he was now breathing a normal rate. Ugh- now what? I went inside and sat in the waiting room without registering, just to watch for a while. I was eventually the only one there and a nice nurse came and checked his oxygen level. It was 96%, which is good, so we went home. The next day I could tell he wasn't feeling well. I had sent Andrew and Tyler up to Brower's while I taught piano, as I usually do on Wednesdays. Half way through lessons Lisa called and said that Andrew was having a hard time breathing again, and was throwing up. So Ryan and I drove him back to the hospital. This time we registered. Drew's O2 level was still in the 90's, but since it was our second time there the nurse recommened we see the doc. The doc ordered a chest x-ray, which showed pneumonia. She asked where we would like to have him treated at, and Ryan promptly said Primary Children's. I ran home and got Tyler and clothes for all of us, and then rode in the ambulance to Salt Lake. Ryan and Tyler followed behind, with Grandma Shell and Grandpa Steve behind them. It was snowing again, but we still went fast. Three hours is a long time in the back of an ambulance with your sick baby strapped to a gourney. Luckily he slept the whole way.

Short version: Tyler wasn't able to stay with me, because of H1N1 restrictions, so he stayed at Grandma Nina's. Andrew did not have bacterial pneumonia (which is what was initially suspected because of the problems during dilation). He had rhinovirus, which causes the common cold for most of us. Andrew received IV fluids the first night we were there, and then pedialyte through his G-tube. After two days, the doctors said we could go home. Andrew was still not his healthy self, but I was confident we could take care of him at home. He always has a really hard time with colds, so that part was not new to me. He didn't have any problems breathing while we were in the hospital, so we went home Friday morning.

They did do another test with x-ray and determined that he had scar tissue in his lung that was not letting the air back out of his lung. (Was it the right or both? I can't remember now.) But just said that they would use a scope to look at it during his next dilation. No pneumonia.

The weekend went smooth and Drew was doing OK. Tues he had a pretty persistent cough, but it was dry. Wednesday it was a little more wet. Thursday it was more wet and bothering him more. He was coughing so often that he was having a hard time sleeping. Friday I took him to the doctor. She perscribed an anti-biotic, just to make sure there wasn't and bacteria growing in his lungs, and gave us a machine and perscription for breathing treatments.

Well, I did the first one when we got home, and he seemed pretty comfortable for a few hours. I was supposed to do the treatment every 8 hours, but after 4 hours he was having a hard time breathing. So I did another one. It helped for about an hour. By then it was 8 pm and he was breathing 60 breaths a minute again.

I called our surgeon, cuz he's really nice and gave me his cell phone number. He said we better get him back to the hospital. We risked it and drove ourselves there this time.

You can get into the ER pretty quick when you walk in and tell them you're child is having a hard time breathing. Once you're in it's still long though. They finally did another x-ray and put Drew on oxygen. Once again they took samples for testing to find out what was causing his trouble.

The x-ray just showed extra air in his lungs, thought to be caused from the scar tissue. This time he stayed in the hospital til Tues. It was confirmed that he had rhinovirus, again. He was on O2 all but the last 18 hours or so. Mostly he slept, and threw up occasionally. He always throws up when he's sick because of his reflux. It makes the nurses pretty nervous, but I assure them it's totally normal, and they let him stay on G-tube feeds.

Sunday Ty knocked his tooth out. Monday was my birthday and I woke up with the flu. I couldn't stay with Andrew while I had the flu, so Ryan stayed with him while I spent the day on the couch at my mom's with Tyler.

Quick version again: Tues we went home. Wednesday Ty had the flu. Thurs we went for follow-up and found out Andrew had double ear infections. We chose not to use anti-biotics, in hopes of keeping his immune system growing, and used essential oils to treat instead. It took another week, but Drew finally came around to his normal self again. He had the runs for 8 days, I think because he's also cutting teeth.

Ryan had the flu Super-Bowl Sunday.

Anyway, we are all happy and healthy once again. Hooray!!

Ryan has been selected to go to Texas for a training on a new area of work Neilson's is starting. He'll be learning how to test pressure relief valves. We're really excited for this opportunity for him.

Tyler is getting more anxious to get outside these days. We're all looking forward to warmer weather.

Andrew is starting to pull-up to stand and is starting to make sounds for words. He had lost his appetite for a while there. He hasn't gained weight for 4 months, and lost while he was in the hosptil. He suddenly has constant hunger now. Hopefully he'll gain weight now. His throat is narrowed again (it's been almost 5 weeks since dilation), so we're going for another dilation Monday. I'm hoping this time will be smooth. They will be looking in Andrew's lungs with a scope, so we should get some answers as to what is going on in his lungs.

Hope you and yours are doing well. We're glad to be home and feeling more settled again.

One year!

Me and my boys. The new toy for Andrew from Mom and Dad.
Tyler loves it when daddy doesn't have to go to work. He cries almost every morning when he wakes up after Ryan has already left. Last weekend he helped Ryan into this fashionable getup.

Tyler also LOVES his new 'fire truck jammies'. He asks to wear them most nights. Andrew has a matching one, so then it's really cool.

Andrew started crawling!! He has been very close for a while. A few weeks ago we were at a friends, and he saw another kid crawling. I could see the wheels turning as Andrew watched closely. The next day he started crawling. Took him a few more days to realize the distance that was possible, but now he's everywhere he wants to be. He has been so happy.

Andrew loves to play with whatever Tyler is into. Tyler isn't sure how to handle the extra hands helping him yet, but they enjoy each other for the most part. No one can make Andrew laugh like Tyler.

Tyler is having his first sleepover at grandma Shell's tonight. Ryan and I are leaving for Salt Lake with Andrew at 3:30 am, for another esophageal dilation. It's so hard to leave Ty every month and be gone for so long. He handles it very well though.

I am amazed to see how fast he learns. His thinking still blows me away. He suddenly is naming his colors correctly now. We've been talking about them for a while, but he's got it now. He still loves anything with a motor and Barney.

(Now for my reflection of the last year):

It's an emotional thing to think back through what our family has been through the last year. Ultimately it is a triumph for us, but the road has been long.

The memory of the night Andrew was born is still clear in my mind. I remember waiting to hold him as they were cleaning him and such and having the feeling that something was wrong that the nurses weren't saying. I asked them, "Is he OK?" They replied that he was doing great, but their faces said that something wasn't right.

I remember Ryan wheeling me to the NICU where Andrew was already on his tummy, on oxygen, and had an IV. The next picture in my mind is Tyler and my family being in the room when Life Flight brought Andrew in before they took him to Primary's. Tyler seemed confused at why his parents had left him all day and what was going on now. Then being alone in my hospital room after my family and my babies had gone. I thought that was so hard. Good thing I didn't know what was coming.

The surgery unit was too busy with critical cases to do Andrew's surgery Sunday, so they scheduled him for Monday morning. I was released from the hospital Sunday afternoon and went to the hospital that night. I felt so detached that I told Ryan we could save gas and just go Monday. He knew it was important for us to go see Andrew though.

Monday came the next shock after surgery when we were told it would be 6-12 weeks before Andrew would be able to have his esophagus repaired. I cried and cried. My biggest worry was what would I do with Tyler for that long. I am so grateful for all the time and help my grandma and mom gave to take care of Tyler so that I could see Andrew daily. My grandparents were also very generous and let us stay with them. My grandpa had been diagnosed with terminal cancer, and so it was a difficult time for them anyway, I'm sure. I knew that Tyler was well loved and well taken care of while he was there though. I am also grateful that I was able to build my relationship with my grandparents more.

I didn't know at that time the blessing that it was to have the surgeon that we did. Dr. Barnhart had trained under a doctor who is a leader for EA. He had the wisdom to know that we could wait and the esophagus would grow. He has been wonderful with Andrew and been so caring and kind. Not many surgeons would give a parent their cell phone number. I have been careful not to over-use that privilege, but every time I have called he has answered. I got voicemail once (while he was on vacation), but even then he called back within minutes. I am so grateful for all that he's done. And grateful for the Lord seeing that we had such a doctor.

Time actually flew somewhat after that. The days I remember are the days that were monumental in infections. Feb 15 was awful. I knew that something was wrong, but nobody seemed to know what to do. Finally Sarah, who turned out to be our Primary NNP and another blessing to us, ordered a scan. That's when they found the fluid, infection, and yeast that had been building in Andrew's right lung. Once we found that things seemed to improve. There were a few minor dips, but we were mostly headed in the right direction.

We had wonderful primary nurses (Laurel, Whitney, Tristen, and Gail), who loving looked after Andrew and cared for him.

Finally surgery came, after 12 weeks of waiting. It was perfect time though and a great outcome. The following week was very long. Andrew was medicinally paralyzed all week so that he could heal. He woke up a sadder baby. He had been so happy before surgery, and after he had such reflux and discomfort. It has taken time, but gradually he has improved. He is sooo happy now. He smiles and giggles and talks almost all day.

Tyler has been through quite a year too. I'm not sure how to even imagine he's felt about everything. He has been resilient and I hope will not remember the downs to this year.

The outstanding thought is the blessings and miracles we seen. My testimony is ever stronger of our loving Father in Heaven and his Son, Jesus Christ.

He's doing it!

Well, I'm a little frustrated, cuz I can't upload my movie.  Andrew is crawling!!  He has been so close for a while now.  Yesterday he saw a friends baby that's a month younger crawl, and I think it just clicked.  There's no stopping him now!!  I'm thrilled for him.  It's hard to believe it's been nearly a year.  He'll be a year next Sunday.  More reminising on that later.  For now I just wanted to shout out- Hooray!!

That being said, we had a nice Holiday.  Time with family is always nice.  Tyler really got into the un-wrapping this year.  Now he opens most any gift he see's.  He got his first bike and a toy drill that he uses on everything imaginable.  Andrew likes to play with whatever Tyler is playing with.  Tyler likes to play with Andrew's toys a lot, so it all works out for now.  I can tell we're going to have a lot more sharing lessons soon though. 

We hope you all had a nice holiday as well.  I will get the crawling video up as soon as I figure out how to.

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.