November 18, 2011 - 258 Days Old

Wow, I can't believe how much time has passed since I last wrote. My new job and school has me so busy that the days pass way too quickly. A couple of people who are regular followers of the blog have contacted us and asked if we are alright, so I figured it was probably time to post again.

Our little Aiden has been fighting off sickness for about the past month and a half. He caught a cold from his brother and sister and it took him a long time to get over it. Then, just as he was getting over it, Skylar and Jasmine generously passed along yet another cold. I swear, Skylar is like a walking petrie dish! He gives it to Jasmine and then she promptly coughs or sneezes in Aiden's face. We do our best to keep them away from Aiden when they are sick, but they sneak in while we aren't watching and pass their germs along. Aiden struggles so much with colds because his immune system is so weak and it takes him a long time to get better.

Aiden is still on oxygen. His breathing doesn't seem to be getting much better. Hopefully he will gradually improve and we can get him off of oxygen before long.

Halloween was fun for the kids this year. Skylar dressed up as Iron Man and Jasmine was a butterfly. They were so cute. I dressed up in my typical Halloween costume, my traditional Mongolian clothing, for our work Halloween party. Amaraa brought Skylar and Jasmine to trick-or-treat around the office and then they had cupcakes and drinks. I took the kids around our neighborhood trick-or-treating. They were so excited. They tired out after only a handful of houses and wanted to go home, so that suited me fine. We still accumulated quite a lot of candy that we had to promptly ration to prevent rotten teeth.

Skylar has really been enjoying school this year. He loves his teacher and comes home saying he had a great day at school every day. Jasmine still misses him when he goes to school, but I think she is getting used to the idea. We have our little morning ritual we go through. Jazzy eats breakfast with Sky and I and sees us off to work and school. She then takes her warm milk in a sippy cup and goes downstairs to watch the latest episode of Sesame Street. She is at such a cute age, but she can be a "terrible two".

Work has been okay. I am still looking for other opportunities that are a better fit for me, but until I find one, at least I enjoy the work I am doing. It's not ideal by any means, but it is a job and I am grateful to have it for now.

Amaraa and I have both caught the cold the kids have had and it has been miserable. Luckily, it affected me pretty lightly, but the dry throat and coughing has not exactly been pleasant in a job where I have to be on the phone all the time. Amaraa has been hit much harder with her cold.

Well, I'll try to be better about writing on the blog. If you hear of any great job opportunities, send them my way.

September 15, 2011 - 194 Days Old

Well, today has been a crazy day. I am into the groove of things at work and have started consulting with my clients. That has been going pretty well so far. I'm grateful that my supervisors are letting me start off slow. Normally, I would have about 55 customers to work with each week, but I only have about eleven right now. I'm sure they will give me more soon, but I'm glad I am able to ease into it.

After work, I went to my two on-campus classes at UVU. Both of my teachers are really good, but it makes for really long days. On Tuesdays and Thursdays, I leave the house at 7:30 AM and get home at about 9:00 PM. While I was in class, I got a text from Amaraa that said she didn't think Aiden's baby formula was working for him. We have been giving Aiden preemie baby formula a couple of feedings per day to help him gain weight. The Enfamil for preemies has been working really well, but today Amaraa got some Similac formula from WIC. I texted back that I would pick up some more Enfamil on my way home.

I had no idea what had been going on that prompted the text message...

Amaraa mixed the new formula for Aiden early in the afternoon. After giving it to him, Aiden got a lot of phlegm in his throat. He started coughing and couldn't clear the mucus. A few minutes later he threw up. With all of the phlegm in his throat, throwing up just aggravated the problem, and everything seemed to get caught in his throat. He started choking and couldn't breathe. Amaraa turned him face-down and slapped his back to try to clear the garbage out of his throat. Aiden started turning blue and his monitor was alarming as his blood oxygen saturation began to drop. After trying everything she knew how to do to get him breathing again, she finally called 911. She kept working on Aiden as she waited for the ambulance. Aiden began doing a little better and his color started to improve. By the time the ambulance arrived, he was breathing much better. The EMTs wanted to take him to the hospital, but Amaraa wouldn't let them. By then, he was breathing normally again and was not in distress. The EMTs were worried because his breathing appeared labored, but Amaraa knew that was normal for Aiden due to his reactive airway disease. She explained that to them and they left. The ordeal was pretty scary for Skylar and Jasmine. Amaraa apparently handled it like a pro. I didn't find out about all of this until I got home from school. Anyway, everything is OK and Aiden is doing well tonight.

Well, that's about all the excitement for today. Here's hoping for a little less excitement in coming days.

September 11, 2011 - 190 Days Old

I haven't posted for a while. I have been pretty busy over the past couple of weeks. I started a new job and I started school, so I don't have a lot of extra time.

Aiden is doing well. He picked up a cold from his generous older brother and it has been a rough couple of weeks with some pretty scary moments. With the lung problems he has, a cold could be fatal, so we were pretty nervous. Fortunately, he seems to be mostly over it now. He is finally sleeping better, and that makes us all happier. Amaraa still has to spend most of every day by his bedside, which I'm sure isn't easy for her. Aiden has been home for more than a month. He's six months old now.

As I mentioned above, I started a new full-time job. It started as an entry-level customer service position at Crexendo Business Solutions, but after being there for four days, I was promoted to Account Manager. I found the job listing on Monster.com and applied from there. When I went in for the interview, I found out that the interviewer was a girl from my ward! Anyway, my job is to work with business owners to create and optimize their business websites so they show up on the first page of Google searches. I have loved it so far. The account manager position is very similar to what I did as a consultant with insurance agents -- helping them to establish a web presence and utilizing Web 2.0 to increase business and traffic for them. I have been in training for the past couple of weeks. Training is now over and I will begin working with clients this week.

I also started school again. I am taking two online courses and two evening classes on campus. My teachers seem to be good although the classes themselves are not my idea of a good time. Skylar started school, too. Last year, we sent him to a charter school in American Fork, but this year we decided to send him to an elementary school a block and a half from our home. We have heard good things about the school and it will be much more convenient for us. He loves his teacher and is doing well in his new environment. He loves being able to ride his bike to and from school with his friends from our neighborhood. Jasmine really misses having him at home during the day. I think Amaraa misses having him home to help with Jazzy, too.

Well, I'll try to be more consistent with writing. Hopefully as I get into the groove of the new job and school, I will be able to find the time to write more.

Back to the Hospital...and Then Home Again - 162 Days Old

We've had a concerning week with Aiden this week. During the nights while he was sleeping, his heart rate would drop down so low that it would make his monitor alarms go off. This started happening a few times a night and then got progressively worse. Usually, the rate would only stay low for a few minutes, and then pop back up to where it should be. As the week went on, this started happening more and more often. One time, the rate stayed low for about thirty minutes. I was out of town and it scared Amaraa. She called the NICU and asked them what she should do. They suggested she turn up the oxygen flow rate a little bit and that would cause the heart rate to stay up. She tried that and the problem seemed to get a little better. They told her that she should take Aiden to the Emergency Room if this continued to happen. He seemed more fussy than usual, wasn't eating very well, and seemed uncomfortable. I thought the heart rate issue could be a problem with the monitor, but we weren't sure. We felt like we needed to have him checked out. When I came home from Price on Saturday, we hopped in the car and took him up to the ER at Primary Children's. We arrived at the hospital at around 4:00 PM. They checked him over and ran some tests. They gave him an Albuterol breathing treatment and he calmed down. They monitored him for a while and told us they would like to admit him and watch him overnight. There wasn't a bed available, so we ended up sitting in the ER until about 9:45 PM. On the hospital monitors, his heart rate and oxygen saturation levels looked great. When they found a room for us, we hooked him back up to our monitor for the trip upstairs. About a minute after I hooked him up, the heart rate dropped down low and the alarm started sounding. We hadn't moved him yet. He was calm. He didn't seem to be distressed. His oxygen saturation levels were still fine. I couldn't believe that it could be an accurate reading when he had been holding steady on the hospital monitors for the last five hours. We went upstairs the the Children's Surgical Unit and were admitted into a room.

The room had a crib, a chair that folded out into a short bed, and a rocking chair. Amaraa and I both decided to stay with Aiden overnight. Unfortunately, the fold-out chair would only accommodate one person. I tried my best to find a comfortable position on the rocking chair, but finally gave up. I spread out a blanket on the floor and slept there. What a miserable night! I only slept about three hours and woke up with a migraine. When the morning finally rolled around, the nurses and doctors came in to do their rounds. They had monitored Aiden all night and said he didn't have any episodes of bradychardia (the heart rate drops). They said he looked really good on the monitors all night. One of the nurses said they were going to move us to a different room sometime today. They kept talking like we were going to be staying another night. Amaraa and I decided to run home to Lehi to grab some necessities in preparation for another night. When we got home, I took a quick shower, we grabbed what we needed, and headed back toward the hospital. When we got back, we saw the nurse still holding Aiden in his room. She said he wouldn't let her put him down except for about fifteen minutes when he fell asleep. She also said that the doctors had decided they were going to discharge Aiden. We were really happy.

Ready to get out of the hospital...again.

The doctor came in about a half hour later and told us that Aiden looked great. She said he had been solid as a rock overnight and hadn't shown any signs of bradychardia. They had run virus panels and other tests that all came back negative. They had done a blood gas test and a chest x-ray, and both of those came back right in line with the ones that had been done before he was discharged from the NICU. He had two echo cardiograms while he was in the NICU and those both showed that there were no structural problems with his heart. The doctor was positive that the problem was the monitor and not a problem with Aiden. She recommended that we discontinue use of the monitor entirely. I told her I wasn't comfortable doing that yet, but that we would disregard the heart rate monitor part of it. I want to continue monitoring his oxygen saturation levels because the monitor will alert us if the cannula comes out of his nose, if an oxygen tank runs out of oxygen, etc. She said it is possible to set the monitor to only alarm on the oxygen saturation side, and not on the heart rate side.

As soon as we finished talking to the doctor, we received Aiden's discharge papers and we went downstairs to the car. We were really happy that we didn't have to stay any longer. I wasn't looking forward to another night on that hard floor. Of course, we were mostly excited to find out that there was nothing wrong with our little guy. It was reassuring to find out that he was doing well after being home for a couple of weeks.

In my last post, I mentioned the Torgerson family reunion that we had last weekend. While I was there, I found out that my cousin, Alynn, is somewhat of a celebrity. She is a food blogger and has been on Studio 5 on KSL. I checked out her blog and everything on it looks really yummy. Her blog is called "Meals 4 Moms" and you can find it by clicking here. The whole idea of the blog is to "help moms spend less time in the kitchen and more time with the ones they love." Check it out. Bookmark it. Visit it often. It's definitely worth your while.

August 9, 2011 - 157 Days Old

It's nice to have "En-ay" home

Well, Aiden has been home for a week now. It has been a week of adjusting. Aiden is adjusting to his new surroundings, a new bed, new toys, etc. We are adjusting to his 24-hour care, giving his medications and treatments, having his monitor alarms go off every two seconds, not getting much sleep, etc. We are thrilled to finally have him home, though. It's so nice not to have to drive for an hour to see him. For the most part, he has done really well at home. He still requires a lot of care, but hopefully as he grows older, he will get easier and easier to care for. We are still trying to get used to all of the new noises. Aiden's oxygen concentrator (the piece of equipment that makes oxygen for him from room air) is quite loud. It also creates a lot of heat, so I had to install a ceiling fan to keep from having to freeze out the rest of the house just to keep our room at a reasonable temperature.

I've been applying and interviewing for jobs for the last couple of weeks. I've had two interviews so far. I feel like they have gone well. I hope to find something before school starts.

We had a family reunion for my Torgerson side on Saturday. I went and took Skylar and Jasmine with me. It was a really great time. We haven't had a family reunion on that side of the family since the mid-90's. I haven't seen a lot of my cousins for a really long time. One of them I hadn't seen since I was just a little kid. It was neat to be able to get reacquainted with them and meet their families. Since we can't take Aiden around crowds or kids, Amaraa stayed home with him. Everyone asked about them and wondered how they were both doing. I really missed having them there, but we planned another reunion for next year, so hopefully by then our family will all be well enough to attend.

I took Skylar and Jasmine swimming last night for FHE. We had a really fun time. It has been way too long since we went swimming last. They both said they want to go again soon. The summer seems to be ticking by way too fast. Before long, Skylar and I will be in school and there won't be as much time to do things, so we're trying to pack it all in before school starts. Speaking of school, I registered Skylar for school today. We're going to send him to a different school this year. We liked his charter school, but we didn't feel like we would be able to meet the parental volunteer requirements this year with Aiden at home. We decided to send Skylar to an elementary school about two blocks away from our house. We have heard good things about the school from our neighbors, so I think it will work out better for us this year.

Homecoming - 148 Days Old

Just four days shy of his 5-month birthday, we were finally able to bring Aiden home today. It has been a long, nerve-wracking day, but we are finally all home. I can't believe it. It doesn't seem real yet.

We "roomed-in" the other night (a final requirement where parents stay at the hospital and take care of their baby unaided for a 24-hour period). Unfortunately, the room we stayed in only had a hard, uncomfortable fold-out couch and a hard, uncomfortable recliner for us to sleep on. Aiden had to be hooked up on two monitors, the one we were bringing home with us and the one the nurse could monitor remotely from outside the room. The nurse's monitor wasn't supposed to be on because they try to replicate an actual home experience as closely as possible. Unfortunately, the nurse couldn't get her monitor to work unless she turned it on in the room. Our own monitor was fine, and only beeped a few times during the night when Aiden's oxygen saturation dropped down. The nurse's monitor, though, beeped about every two minutes. We would just be dozing off and it would beep and wake us up. At about 2 AM, I went in and talked to the nurse about it. She adjusted the sensitivity settings on her monitor. It still beeped too often, so since I had seen how she adjusted it, I adjusted it way down and solved that problem. Even though the beeping had stopped, though, it was still impossible for me to sleep on the uncomfortable recliner. Aiden did great, but we had a pretty miserable night.

Yesterday, when the new nurse came in after shift change in the morning, she asked us how long we were planning to stay. We told her that they had told us we had to be there until 4 PM. She said she didn't think we would have to stay that long. The nurse practitioner told us that she would probably send Aiden home Monday, so that's what we were planning on. This nurse, however, was talking like we not only wouldn't have to stay until 4 PM, but that we would be able to take Aiden home with us when we went home. We couldn't believe it. After checking with the nurse practitioner, she told us we didn't have to stay until 4 PM, but that they still had some blood tests to run on Aiden. She said they would draw the blood in the morning (today) and that we could take him home with us as soon as they were done. We ended up staying at the hospital until 2 PM and then we headed home to get ready for Aiden's homecoming. We cleaned the house from top to bottom, got Aiden's crib set up, and caught up on some much-needed sleep in preparation for our big day.

This morning, we got up and prepared a few last minute things and then drove to the hospital. We had to wait for the doctors to do their rounds, the nurse practitioners to write Aiden's prescriptions, the prescriptions to be filled at the hospital pharmacy, and the discharge papers to be explained, reviewed and signed. When the doctors rounded, they made it very clear that Aiden is still in a very fragile condition. He said we are not to take him to any public places and not to allow visitors into his room. They said we could take him outside, but not on days when the pollution levels are high. We have to keep him pretty isolated for quite a while. And once RSV season starts, we have to be even more cautious. So, it appears we're not out of the woods yet.

Leaving Primary Children's

It was about 4:15 PM by the time we were cleared to be discharged. The nurse practitioner gave us some last instructions and went over some final details. We said goodbye to all the doctors, nurse practitioners, and nurses. Then we loaded Aiden in the car seat, hooked him up to our travel oxygen tank and monitor, and headed downstairs. He fell asleep on the way down to the car, so it looked like we would have a pretty peaceful trip. We headed down the freeway and got to Lehi at about 5:00. Aiden slept for about half of the trip. When he woke up, he just peacefully stared at his mommy the rest of the way home. Skylar and Jasmine were really excited to see their little brother and finally have him home. My mom and dad had driven up from Price and were there waiting for us as well.

Petersen Medical came over shortly after we got home and set up an oxygen concentrator and a couple of extra oxygen tanks and cannulas. Aiden was pretty over-stimulated after all that had happened, but after things settled down a bit, he relaxed and fell asleep. What a day! Hopefully we'll have a relatively peaceful night.

Rooming In - 146 Days Old

Tonight is a big night for us. We are "rooming in" at Primary Children's. This is the last major requirement prior to taking Aiden home. We have to spend a night and a day at the hospital taking care of Aiden on our own, without the general help (but with the emergency backup) of the nurses. We have had to learn about how to use all of his monitors, medications, and oxygen equipment and we are using the equipment we will be taking home with us, in the room tonight. If everything goes well, he will be coming home very soon. We are very excited. So far, it's all a bit overwhelming, but I'm sure we'll get the hang of it as the night progresses. We have been waiting for this for a long time, but now that it's finally here, it's pretty stressful. I'll post again tomorrow and give a report on how we fared.

July 26, 2011 - 143 Days Old

Well, another week has passed. This has been a busy one.

Check out my ride!

On Tuesday, Aiden was transferred to Primary Children's Medical Center. We were fortunate that one of Aiden's favorite nurses and one of his favorite Respiratory Therapists, Jen and Mark, were on the Life Flight transfer team that took him there in the ambulance. Because they knew him so well, they were able to brief the nurses and nurse practitioner on Aiden's condition and medical history. We were excited to find out that the nurse practitioner that would be receiving Aiden at Primary Children's had worked at Utah Valley Regional Medical Center for several years and had only just started at Primary Children's. All of Aiden's nurses at Utah Valley had worked with her and said she was great. They transferred Aiden in an isolette strapped to a gurney. He is getting so big that they thought they might have to transfer him in a car seat. He ended up fitting in the isolette, though...barely. We followed in our car and got there just after Aiden got settled in the NICU.

Happy boy

Aiden just looked like he was ready to come home. He looked healthier than I have ever seen him. He was happy and doing well. As soon as we entered the NICU, we could see that we had been spoiled at UVRMC. He had been in a big room by himself and had a swing and a TV where he would watch Winnie the Pooh. At Primary Children's, he was in a room with three other babies, packed in there like sardines. His nurse was ornery and we felt like we weren't welcome there. Fortunately, the nurse practitioner came in and talked to us. She was great and made us feel more comfortable. At shift change, we got a better nurse too, so by the time we left to go home, we felt much better about things.

Aiden's new digs at PCMC

On Wednesday, we went to the hospital in the morning so we would be there when the doctors, therapists and nurse practitioners did their rounds. They had put a mobile on Aiden's crib and found a swing for him. His doctor is the head neonatologist at the PCMC NICU. After talking with them, we felt like Aiden was in good hands. They have been running tests on him all week. They tested him for Cystic Fibrosis, did an echocardiogram, and did a head ultrasound -- all of which came back normal.

Amaraa passing the time at PCMC

I went to Price to work for a couple of days. Amaraa drove the crazy roads to PCMC every day, making me a nervous wreck. I came back into town Saturday afternoon. We went to a neighborhood Pioneer Day party and had a great time. Our next-door neighbors put on the party every year and it is always a fun time. We look forward to it every year.

Sunday after church, Amaraa and I went to Salt Lake to visit Aiden. He still looks so good and seems ready to come home. We drove up again yesterday and spent the majority of the day with him. I hate having him so far away. Our 15-minute drive has now turned into a 50-minute drive. We were able to talk to the nurse practitioner that was there yesterday. He said they had sent off a few more genetic tests, but that Aiden is doing really well. We are so happy that they are checking Aiden out thoroughly, but can't wait to have him home. After 7 months of hospitals, we are ready to be home, all together, as a family.

July 19, 2011 - 136 Days Old

Ho hum. We thought we might be getting Aiden home today, but it turns out they are going to transfer him up to Primary Children's Hospital. He has been meeting all of the basic requirements the doctors here require before he goes home, but he still worries them. He has some sort of reactive airway disease (possibly Asthma, but they don't know for sure) that is causing him to have breathing issues. Their main concern is that when he has a breathing episode, it can get bad really fast and the recovery is slow. And even though his baseline health is looking really good for him, it doesn't look so great for regular babies his age and size. They are concerned that if he had to go to an ER after he goes home, they would panic and not know to handle him because they don't know what his baseline is. The neonatologists here met yesterday and discussed Aiden and they felt it would be best to transfer him to Primary Children's to be seen by the pulmonologist there. Since they will be handling his continuing care for the reactive airway problem anyway, it will be a benefit for them to be able to evaluate him before he goes home. We are really going to miss the doctors and nurses at UVRMC. They have been so caring and have done so much for us and Aiden. We are bummed that we probably won't be getting Aiden home this week, but we also want to make sure we get him home in the best condition possible.

Yesterday, Aiden struggled a little bit with feedings. He didn't want to eat and Amaraa was pretty frustrated. He had been on steroids for a breathing episode, and the nurse thought that since he was coming off of them, he may have lost his appetite, which is pretty common. I tried him on a bottle for a few minutes, but he still didn't really seem to want to eat. We were waiting for the results from the doctors' meeting, so we hung around the hospital most of the day.

We tried Indian food yesterday. I have never eaten Indian food before, but Amaraa had had it a few times in Japan. It wasn't bad, but I think it is definitely an acquired taste. My taste buds were confused. We weren't able to leave for lunch until Aiden finally fell asleep at 4:00 PM, so we were really hungry. We probably could have eaten just about anything.

July 17, 2011 - 134 Days Old

Today has been a pretty good day. I sang in my ward's Sacrament Meeting this morning, so Amaraa didn't go to the hospital at 6:30 AM as she usually does. We all got ready and went to church. My parents came up to hear me sing, so they met us there. We have lived in that ward for six and a half years and we can probably count on one hand the times we have made it to church on time. But we did today! I felt like my song went really well and Kandice Gardner played the piano beautifully.

The doctors decided to pull Aiden's feeding tube out today. One fewer tube...yay! Now, he either nurses or gets a bottle. He is doing well with both now, so he doesn't need that feeding tube anymore. The only disadvantage is that he has to take his medicines by mouth now, and he doesn't like the taste of them. He has a little baby swing in his room. He loves swinging back and forth, watching his mobile and listening to the music it plays. He is still receiving breathing treatments several times a day. The treatments calm him down and help him to breathe much better.

We will be so glad when Aiden comes home. Amaraa spends most of every day at the hospital. It wears her out and she doesn't get to see Skylar and Jasmine as much as she would like. A couple of weeks ago, Amaraa had to do three "12-hour requests" where she had to be at the hospital for three twelve hour periods and feed Aiden whenever he indicated that he was hungry. They are going to have her do a "24-hour request" soon, too (maybe more than one). The "requests" are long marathon sessions where she just has to stay by Aiden's bedside all day. Before Aiden comes home, we both have to go and stay overnight at the hospital with him to get used to all of the monitors and administering all of his medications and treatments, etc. That's called "rooming in". We are lucky to have Amaraa's mom with us to help out with the kids, but it is still hard for Amaraa to have to be away from home so much. Either Amaraa or Aiden or both have been in the hospital for almost seven months now. Sky and Jazzy miss their mom and dad. It has been a long ordeal and we won't be too sad to have everyone home at last.

July 16, 2011 - 133 Days Old

Sorry I haven't posted for a while. I have a lot of news to share.

Aiden is still in the hospital. He had another little setback last week. He picked up a virus and has really been struggling to breathe. He has been wheezing and coughing a lot and had a pretty miserable week. He has been improving a bit over the last couple of days, but he is still having a hard time breathing. When his breathing was at its worst, he didn't want to eat much, so it was very frustrating. He still got plenty of food through his GI tube, but nursing wasn't going very well. Fortunately, now that he is feeling better, the nursing is going better too. The doctors wanted to put a camera down his esophagus yesterday to make sure everything looked OK. They had to anesthetize him for the test, so we were nervous about it. He did really well and everything went perfectly. They took a biopsy of his esophagus to run a few tests, but the doctor said everything looked great. When I came home from Price this week, I stopped to see Aiden. The occupational therapist was there doing exercises with him. After all he has been through over the past week, I was surprised to see him looking so good. It seems like he grows so much every time I see him.I just wish he could outgrow his respiratory issues and be a healthy little guy for a change.

We have decided not to move to Price after all. We are just going to sell our house there as soon as it's finished. We were really excited for the new house, but the move never really felt right. We feel like I need to just stay in Lehi until I finish my degree. USU-Eastern (formerly CEU) doesn't offer the degree program I want, so I would have had to do a lot of commuting and only go to school on a very part-time basis if we moved. By staying here, we will also be closer to a large hospital in case Aiden has problems after he comes home. When it was all said and done, there were more good reasons not to move than reasons to move. So, I guess that means I'm looking for a job. It would be great to find something in the computer field since that's what I'm studying, but I'm open to any good opportunity that will still allow me to go to school. Any ideas or recommendations would be appreciated. Oh, and by the way, I speak Mongolian, so that should help me find something pretty quickly. :-) I'm still building houses with my dad for the moment, but I need to find something before Winter hits, so please let me know if you hear of any good opportunities in the next couple of months.

I'm singing in church tomorrow morning. I haven't sung in this ward before, so I hope it goes well. It has been a while since I have done any singing at all (other than karaoke :-)), so I'm a little out of practice. I'm looking forward to it, though.

Well, I've already used two emoticons and it's getting late, so I had better quit while I'm behind. I'll write again soon.

July 1, 2011 - 118 Days Old

Well, we're at the beginning of another month. Crazy. I can't believe how time flies. This has been another week of ups and downs. It has reminded us that we are still on the preemie roller coaster and probably won't be getting off for a while. Aiden was doing really well until Wednesday when he had another little setback. His lungs weren't doing very well and they had to increase his oxygen flow rate to 4 liters. He had been down to 2 for several days, and we were very encouraged by that, so it was disappointing that they had to increase it again. He also didn't eat very well at feedings and the nurse had to supplement his feedings through his GI tube. He struggled for a few days and they kept him on 4 liters. Fortunately, he seemed to be doing a little better yesterday. Today, they felt comfortable decreasing his flow rate to 2.5. He seems to be doing well so far, but he still isn't eating like he should, so we're cautiously optimistic. Of course, all of this info is coming to me second-hand. I'm in Price working again.

We have mostly been working on our other building projects this week, so progress on our house has slowed. We did work there part of yesterday and all day today and we were able to get some of the exterior walls finished and stood. We will work there most of the day tomorrow as well, so we should be able to get most of the exterior walls up. This is a fun point in the construction process because daily progress is very noticeable. We have decided there's no point in rushing the project since we won't be able to finish in time to get Skylar in school anyway, so we're probably looking at getting in around Christmas. That will allow me to get a few more classes in at UVU in the Fall and will also keep us closer to UVRMC for a while, in case Aiden has any problems after he comes home -- KNOCK ON WOOD.

Well, I'll write more when I get back home this weekend. I don't usually write when I'm in Price, but I had a little extra time, so I thought I would post. I hope everyone has a fun and safe 4th of July!

June 25, 2011 - 112 Days Old

Getting Big!

It has been a long time since I last posted. I am out of town most of each week and I only post when I'm at home. Whenever I'm at home, we rush around trying to get things that I need to do done before I have to go out of town again. As a result, I usually only get about half a blog post written and then I run out of time. Today, I have promised myself that I won't leave my computer until the blog post is written and posted. Sorry to all of you loyal followers out there, for not posting more often. 

Aiden has been doing really well, but he had reached a bit of a plateau recently, and the doctor hadn't been able to decrease his oxygen settings. He wasn't feeling well for part of last week and his belly was filling up with air again, so they ran a few tests, all of which came back normal. The doctor ordered the respiratory therapist to start breathing treatments with a medication similar to albuterol. We have prescriptions for albuterol for our other two kids, so it really wasn't a surprise that Aiden, too, might need something like that. They also asked an Ear, Nose and Throat Specialist (ENT) to come in and evaluate him. The breathing treatments helped immensely. He was much calmer and didn't seem to be struggling to breathe as much as he had been. He had been bobbing his head with every breath before, and with the treatments, that seemed to be much better as well.
 

Jasmine at the parade

Aiden's feedings are going really well. They moved him to two-a-day feedings and that went so well that two days later, they moved him to three-a-days. The day after that, the doctor called and told Amaraa that they wanted to start four-a-days. That means that Amaraa is at the hospital for most of the day, even if the fourth feeding is done with a bottle. They don't like her to do back-to-back feedings, but that has been unavoidable for her. Aiden's getting to be a real chunk. Today, he weighed in at 9.5 lbs.! He's getting about 77 mL every time he nurses, which means that they don't have to supplement the feedings through the GI tube on the feedings Amaraa is there for. We get the impression they are prepping him to come home soon. He will be four months old on July 4th. Maybe we'll have him home by then, who knows? That would be cool, but I'm a nervous wreck. They won't come out and say they are getting him ready to come home, but it seems like they may be.

Work is progressing on our house. This week, we put on floor joists, subfloor, and started building walls on the main level. This stage of the building process is always fun because it seems to move so quickly. It's fun to see it coming together. It's hard being away from my family, but it's only for a while.

Skylar walked in the Lehi Round-Up Rodeo this morning. It was a lot of fun. Jasmine and I went and watched. Sky wore basketball clothes and carried a rubber chicken.

Hard to see the color here, but it's Dark Cherry Pearl (Burgundy)

Last week, we traded in our Subaru Outback for a 2011 Honda Pilot. We had to get a bigger vehicle before bringing Aiden home. When we would all go someplace together, Amaraa's mom had to lean in while someone shut the door from the outside. There's no way we could have fit Skylar's booster, Jasmine's car seat and another car seat for Aiden in the back seat. And even if we could have, there would be no room for Amaraa's mom. Now we have enough room for everyone and some to spare. We love our new car.

Well, that's about all the news I have for now. I'll try to write more often from now on.

June 7, 2011 - 94 Days Old

Yesterday, we had a bit of a setback with Aiden. They did a blood-gas test and the results were not good. The doctor decided to increase Aiden's cannula flow rate to 8 - the maximum it can be on the high-flow cannula. We were pretty disappointed, but at least he's getting what he needs.

I left for Price this evening. Skylar came with me this time. It was nice to have some company on the drive. He's a good travel buddy.

Today, I was pretty worried about Aiden. Just before lunch, I got an opportunity to call Amaraa to see what she had heard. When I called, she was at the hospital. I had not expected to hear good news and had prepared for the worst. Imagine my surprise when I heard not only good news, but great news. Amaraa said, "Guess what?" "What?", I said. "I'm nursing Aiden right now", she said. I couldn't believe it! We had been told that Aiden couldn't try nursing until he was at a flow rate of 2. He had been doing better this morning, so the doctor turned him down to 5. When Amaraa got there, he asked her if she would like to try nursing Aiden and she said yes. He turned the flow rate down to 4 and let her try. At first, Aiden didn't really know what to do, but he sucked a few times and before long, he got the hang of it. We were pretty excited about that. The suck-swallow-breathe process is instinctive to newborns, but if they aren't able to do it for a while, they can forget, and it can sometimes take a long time for them to re-learn how to do it.

Here's to hoping for another great day tomorrow.

June 5, 2011 - 92 Days Old

This week has been a busy one. I was out of town for most of the week, so I didn't have time to post to the blog. Things have been going really well with Aiden this week. He is still making good progress. He was struggling with the lower flow rate on his cannula, so they increased it to 5 liters again and held him there all week last week. Yesterday, they turned him down to 4 liters again and so far he is doing well with that. The doctors don't plan on decreasing it any more for a while. That means that he won't be able to start trying to nurse for a while, but that's OK. The worst thing for him would be to push him too quickly and have him relapse because he isn't ready to be pushed that hard.

When I came back from Price on Friday night, I stopped by the hospital. Aiden's nurse, Becky, was holding Aiden and doing exercises with him to help him increase his neck, arm and leg strength. When I got there, she gave him to me and let me do the exercises with him. It was so fun. Now that he is a little older, he is able to interact with us a lot more. I had a great time. After the exercises, I bathed him and got him ready for bed.

Yesterday was Aiden's three-month birthday. There are three long-termers in the NICU now, and Aiden is the oldest. Every time he turns another month older, the nurses make a scrapbook page for him with his picture on it, wishing him a happy birthday. When we were over there today, they brought in his 3-month birthday scrapbook page. They moved him into a room within the NICU a couple of weeks ago, so when we are there, we can close the door and have some privacy. It is so nice and much quieter than when he was in the main area. He was in a room for about a week prior to his big setback, but while he was so sick, he had to be out in the main NICU area. We feel so blessed that he is doing so well now.

Wednesday was my birthday, but since I was in Price on Wednesday, we decided to wait until Saturday to celebrate. We visited Aiden in the morning and in the afternoon, we took the kids up to Mt. Timpanogos Park up Provo Canyon and played around. We played frisbee and catch, wrestled a little bit, and played tag. Later, we went to The Happy Sumo to eat. I had such a great time and it was an awesome birthday.

May 27, 2011 - 83 Days Old

It has been another good week for us this week. Aiden has continued to do well off of the ventilator and they have been weaning his settings on the cannula all week. He is now on a flow rate of 4 liters and around 25% oxygen. Once they can get him down to 2 liters, they will let him start trying to nurse. The doctors had him down to 3 liters once this week, but he was working really hard, so they turned him back up to 4.

Aiden in his blessing outfit

On Sunday, we were able to give Aiden his name and a blessing. We apologize that we couldn't invite more of our close friends and family members, but they only allow us to have a small number of people in the NICU and they stretched the rules for us as it was. Amaraa's mom didn't even go in, so it was basically my parents, my brother and his wife, and our bishop. Anyway, the blessing went well. We dressed Aiden in the outfit Skylar was blessed in that was given to us by Amaraa's American mom and dad, Jani and Oren Randall. It was much to big for Aiden, but we didn't know they would let us dress him in a blessing outfit until Saturday night at about 9:00 PM, so by then it was too late to find one that would fit. Skylar's outfit worked, though. We wrapped Aiden in a beautiful white baby blanket that Amaraa's good friend, Debbie Prichard, knitted for Skylar, and it looked great. He was so cute. He was awake the entire time and was quiet and peaceful as we have him the blessing. Aiden will probably be in the hospital for at least another month, so we were glad Bishop Price gave us special permission to bless him in the hospital. It was a great experience.

Pouring our foundation walls

I went to Price for most of this week. We had a basement finishing job to complete and then we were able to work on our own projects. We got our basement walls poured and we started laying out the footings for another home. We had subcontractors form and pour our basement walls and just as they started pouring the concrete, it started raining really hard. They stuck with it and it turned out fine, but I felt bad for them out there. I tarred the foundation and we worked on getting the window wells in so I can backfill. Anyway, the project's moving along.

I came back from Price yesterday because we had an infant CPR class last night. It was a pretty basic class, and since both Amaraa and I are CPR certified already, it was just a review. It was nice to be able to review, though. The NICU requires that all preemie parents take the class and they recommend it for other family members, too. I was able to hold Aiden for a while. He looked so good and he was wide awake. He was a little bit fussy, but I sang to him a little and he quieted right down. It wasn't long before he fell asleep.

Today, I cut the lawn and did a little bit of yard work. We went to see Aiden in the afternoon and he was still doing well. Amaraa and the kids are sick, so we didn't stay long. Dr. Cheatham called me this afternoon and said that they were going to leave him on 4 liters for the day today, but that they would probably try to wean him to 3 tomorrow.

Skylar and Jasmine's birthday dinner

Tomorrow is the kids' birthdays. Jasmine will turn 2 and Skylar turns 6. Skylar wanted to have a party with his friends, but because he is sick, we didn't want to infect the world. We might do one next week or something. Anyway, they are both really excited. We took them out to dinner tonight and the waiters sang to them and gave them dessert. They thought that was really cool. I still can't believe they were born on the same day, four years apart. Aiden's due date was May 18th, so he would have been close, too.

Well, it's late and I can hardly keep my eyes open, so I had better get to bed. More tomorrow.

May 20, 2011 -76 Days Old

This has been a great week for Aiden. He was able to finally meet his big brother and sister last Saturday and he has been doing well all week off the ventilator. It is so exciting when we call his nurse every morning and hear that he is still off the ventilator and doing great. We always half-expect to hear bad news, but so far he is doing really well on the cannula and tolerating his feedings.

This morning, Sky graduated from Kindergarten. The graduation program was so cute and Sky did a great job with his parts. We were so proud of him. I can't believe he is already finished with Kindergarten.

After the graduation, we dropped off the kids and Amaraa's mom at home and headed to the hospital. Aiden looked so great and was still doing very well -- so well that they had decreased the oxygen flow to his cannula from 8 liters to 7 liters last night. He has to be down at 2 liters before he can try learning how to nurse. They are going to try to wean him every couple of days as he is able to tolerate it.

It is so fun to hear Aiden's little voice again. When he had the breathing tube in, he couldn't make any sounds, so it kind of surprised us the first time we saw him after he got it out. A baby was grunting and crying really close to us. We couldn't figure out where the sound was coming from. Finally, we realized it was Aiden!

Healthwise, things are still a bit crazy at our house. Last week, Jasmine started pulling on her ear and saying it hurt. Amaraa took her to the doctor and she had an ear infection again. And then I got Amaraa a bicycle for Mother's Day. She has been asking for one ever since we first got married. She decided to take it for a test ride and rode out into the street and then back onto the sidewalk in front of our house. Just as she was turning back onto the driveway, she fell and hurt her arm. She thought it was broken at first, but the pain eased a bit and she decided not to go to the doctor. It has been hurting a lot throughout the week this week and I think she regrets not seeing the doctor now. Anyway, Mother's Day fail for me. If I knew she couldn't ride a bike, I wouldn't have bought it for her.

This afternoon, Amaraa got a call from the doctor. She said she had just weaned Aiden's flow rate to 6 liters and that he seemed to be tolerating it well. We feel so blessed that he is progressing so well.

The Big Meeting - 70 Days Old

What a day! I called Aiden's nurse this morning and asked how he was doing. She said that he did well last night without the ventilator. He is still on the nasal cannula and doing very well. I worked for half of the day and then headed back home. I picked Amaraa and the kids up and we went to the hospital for the big meeting. Skylar was so excited. The first thing he said to me when I walked through the door was, "Can we go see Aiden now?"


First Family Photo

We went in to see Aiden and he was still doing really well. Skylar kept saying, "He's so cute" and rubbing his head. I don't think Jasmine really understood what was going on except that we were visiting a baby. She touched him very gently and rubbed his head. Aiden was so excited to see them. He opened his eyes wide and kept looking back and forth from Skylar to Jasmine to Amaraa and I. I said, "Aiden, this is your big brother Skylar and your sister Jasmine." He got a big grin on his face and just kept smiling after that. Amaraa held Aiden and we all took a family picture. I think it turned out really great. Jazzy got a little wild and I had to take her to the lounge a few times, but Skylar stayed right by his mom and little bro. He has been waiting for this for a long time, and now that it's finally here, he wanted to soak it up.

Hopefully, he will just continue getting better and better. We feel like he's finally back on the right track. He has been on the ventilator for about a month and a half, so this is a big deal. Thank you for all of your comments, thoughts, and prayers.

Off the Ventilator - 69 Days Old

Today has been a great day. This morning, I received a call from Aiden's doctor. Over the past three or four days, they gave been slowly weaning his ventilator pressure and oxygen support. The doctor said that he has been tolerating the lower settings really well and that they were going to try to wean him off of the ventilator sometime today. I was so excited. I am out of town, so I have just been getting reports from Amaraa every day about his progress.

Amaraa went in to visit Aiden this morning and was able to hold him. My mom had to go to Provo today, so she stopped in to see him while Amaraa was there. She couldn't believe how big he was. She hasn't seen him for a few weeks, so he had put on more than a pound since she was there last.

We kept checking throughout the day to see if they had taken Aiden's breathing tube out yet. They were really busy in the NICU today, so they weren't able to do it until about 10:00 PM. When the nurse called to let us know tonight, he was doing really well on the CPAP. I can't wait to visit him tomorrow.

They have finally lifted the restrictions on kids, so we are taking Skylar and Jasmine in to visit him for the first time tomorrow after I get home from work. Skylar has been so excited all week.

Well, I'll write again tomorrow after we visit Aiden. Please pray that he does well off the vent.

May 9, 2011 - 65 Days Old

On Wednesday, Aiden turned two months old! The nursing staff made a scrapbook page for him for his 2-month birthday. I can't believe how fast time flies. It seems like he was just born a few weeks ago.

We went to the hospital this afternoon and as we were entering the NICU, we ran into Aiden's doctor. She told us that she had increased his feedings and that she would continue to increase them by 3 mL every feeding until they were back up to the amounts they were giving him before his belly blew up. She said his x-rays looked much better today. She also told us that the subsequent blood cultures they had done had come back negative for bacteria, so the initial blood test must have just been contaminated with bacteria from the skin. What great news!

We had Skylar and Jasmine with us, so we had to take turns going in to see Aiden. I went in first. He looked great. They had weaned his ventilator pressure down to 8 yesterday, and he was still holding strong there today. His oxygen was at 30%. Amaraa went in after me and was able to hold him. I sat and played with the kids and watched Karate Kid 3. We are so happy that he is getting better. It is such a relief that he doesn't have a bacterial infection. It's a good day today.

May 8, 2011 - 64 Days Old

Sorry I haven't posted for a while. I am out of town so much that it is hard for me to find the time to post. A lot of people have told me that they miss reading new posts, and it has been nice to hear how many people actually follow this blog.

Aiden has been doing really well. He had been improving every day and we were really encouraged by the progress he had been making...until Saturday. The doctors had increased his feedings to 49 mL per 3 hours. They had stopped giving him IV nutrition, which had been hurting his liver, because he was getting enough nutrition through his regular feedings. They had started giving him steroids to help his lungs and they were able to wean him down on his ventilator settings. They had taken the "pick" line out of his head, his liver function was improving, and he was doing great. He seemed to be tolerating the feedings really well. And then, Saturday, his bowel blew up with air again. It was so big that they were afraid it would perforate, so they stopped his feedings and put another IV line in to give him nutrition and medication. I worried about him all day and headed back to Utah Valley as soon as I could. On my way back through, I stopped at the hospital. They had taken him out of the open warmer bed and put him in what they call a "monkey bar" crib. Aiden's nurse, Chris, updated me on everything that had gone on. She said that they could start feedings again as early as the next day (today) as long as his tummy started looking better. That encouraged me and made me feel better about things.

Saturday night, though, the nurse called and told us that the blood culture they sent to the lab the night before had come back positive for bacteria. They didn't know the exact bacteria he had, but they started giving him some antibiotics to get rid of it. We were really bummed to hear that he had an infection. We thought he was doing so well and now this. This NICU roller coaster never seems to hit any flat spots.

When we went to the hospital to visit him today, he looked good. His belly looked better on the x-ray today, so they restarted the feedings at half of what they had been giving him before. The steroids made him really jittery and he was squirming around like crazy, so they had him wrapped up pretty tightly so he wouldn't pull his breathing tube out again. Amaraa let me hold him since I am out of town so much. I love holding my little guy. I would have held him all day if they would have let me. He's getting to be a little chunk. He now weighs more than six and a half pounds. He's such a little cutie and he had his eyes open most of the time I was holding him.

So, we're taking things day by day. Hopefully this will just be a small hiccup in his progress and he will bounce back quickly and get back on the right track.

May 1, 2011 - 57 Days Old

I haven't posted for a while. I was out of town for most of the week and we were finishing up a house, so there wasn't much time to post. Aiden has been doing quite well, though. They have continued to increase his feedings (he's at 33 mL every 3 hrs. today) and he is still tolerating it well. He's now over six pounds and us growing like crazy. His lungs remain the biggest cause for concern. He is still on the regular ventilator and his settings are still too high to try to wean him. He extubated himself twice this week and they tried him on the CPAP, but he didn't tolerate it well, so they intubated him again. He's getting so big now that it doesn't take much for him to pull that tube out. One time, he just turned his head and that did it. The doctor decided to give him sedation every eight hours to try to prevent any more extubations. Every time he takes the tube out and they put it back in, it irritates his airway, so they're doing everything ttery can to try to minimize the risk if that happening more than it has to.

April 26, 2011 - 52 Days Old

Sky and Jazzy with their Easter baskets

I hope everyone had a fun Easter. After church on Sunday, we colored some eggs and had an Easter egg hunt for Skylar and Jasmine. They loved it! The Easter Bunny brought them both Easter baskets that they found in the morning and they had a lot of fun with our Easter activities. This is the first Easter where Jasmine understood what was happening. She ran around the yard, competing with Sky for eggs and candy. Sky only found two more eggs and a little more candy than her. After they had found everything, we sat down and pigged out on Easter candy. It was really fun.



Holding my little guy



After our Easter egg hunt, Amaraa and I drove to the hospital to visit Aiden. He was still doing really well. Amaraa let me be the one to hold him. I really look forward to holding my little guy. Amaraa had been in quite a bit of pain Sunday, so she decided to take one of her prescription pain pills before we went to the hospital. She hasn't been taking pain meds for several weeks because over-the-counter medicines have been taking care of her pain. She became really nauseated and started throwing up while we were at the hospital. She did her best, but eventually we had to leave. As soon as we got home, she took her anti-nausea meds and was fine after that, but the poor girl was sure miserable for a while.

Yesterday was a busy day. We finally made it to the hospital in the afternoon and Aiden was still doing well. They increased his feedings to 21 mL on Sunday, but he still had a bit of undigested food in his stomach yesterday, so they held him at 21 mL. We had Skylar and Jasmine with us, so we had to just take turns watching the kids while the other one went in to see Aiden.

Aiden is still doing well today. We just visited him. They are weaning him off of the pressure on the ventilator (it's now at 9) and the neonatologist increased his feedings to 24 mL every 3 hours. His tummy is still looking good and his residual amounts (the undigested food) are less today. The doctor said that once they can get his oxygen down consistently below 40% and his ventilator pressure down to 7, they will extubate him and try him on the nasal cannula again. It's almost unbelievable that he's doing so well. He has been sick for so long. The little guy's definitely a fighter.

It finally hit Amaraa today that we have three kids. With Aiden in the hospital, it almost seems like we live two separate lives -- one with Aiden at the hospital, and one with Skylar and Jasmine at home. It's difficult to put those two lives together sometimes. We feel so blessed to have three beautiful, wonderful kids. Our family feels complete. I am so excited for the day we can take a healthy Aiden home and merge these two lives of ours for good.

April 23, 2011 - 49 Days Old

Aiden has continued to improve since I last posted. He is still on the regular ventilator, but his lungs are improving. On Monday, Amaraa was able to hold him for the first time in over a month. It was a special experience for Amaraa as they were able to bond again. She had been sick for about a week before Aiden got really sick and Aiden has been sick for nearly a month, so it was a long time coming. I'm so glad he's getting better. He wasn't doing quite as well as he was doing last Sunday, but I expected a bit of a setback since he had made such a vast improvement Sunday. When we visited him on Tuesday, it was my turn. It was so fun to hold him again. He weighed about double what he did the last time I held him -- the day before he got sick. I could have sat there and held him for hours. Tuesday was our third consecutive day of good news about his condition and it seemed that he had finally turned the corner.

On Wednesday, I went to Price to work. On the way through Provo, I stopped to see Aiden. He was still doing really well. His oxygen was at 30% and his PEEP (pressure) setting was at 11. The doctor said that when his PEEP gets down to around 7-8, they can try to take him off the ventilator. Later that night, they tried him without the ventilator, but he didn't tolerate it well, so they put him back on. I was in Price until Saturday, so I had to just get updates over the phone from Amaraa and Aiden's doctors and nurses. I missed that little guy so much! I couldn't wait to come back home so I could see him again. He continued to do well through the week and Amaraa was able to visit him with the generosity of some wonderful friends that arranged to take her to the hospital and watch Sky and Jasmine. Amaraa had our car, but since she hasn't driven on the freeway since her car accident last January, she didn't dare drive herself. This morning, though, she decided she was brave enough to try. She did just fine, but she said she was "white-knuckling it" the whole way.

This afternoon, I rolled back into town and stopped at the hospital on my way home. I swabbed his mouth, changed his diaper and helped the nurse get his temperature and stats. It was so good to see him again. He was awake the entire time I was there. Usually we are lucky to see him with one eye half open, but today, he was wide awake. What a special little guy! Amaraa had a "girls night out" with some of her friends, so I had to be home to watch the kids, so I didn't spend a lot of time with Aiden, but I was there for half an hour or so. I can't wait to go back down there tomorrow. We are planning to color Easter eggs and have an Easter egg hunt for Sky and Jazzy after church, and then we will head down. Things are looking better for our little guy!  He's now up to 18 mL of milk every three hours and seems to be tolerating it pretty well. If he continues to do well, they will increase his feedings 3 mL every 12 hours until he is at full feedings. Exciting!

April 17, 2011 - 43 Days Old

Better news today. Aiden decided he didn't like the breathing tube anymore, so he decided to pull it out. They had been weaning him down on his oxygen support, so they decided they would change him to a new ventilator when they re-intubated him. He did really well on the new ventilator (a ventilator he didn't tolerate well at all previously) and by the time we got to the hospital at around 4:00 PM, they had him down at only 24%! The best news, though, was that on the new ventilator, he could be held. They wanted to watch him for a while before they would let us hold him, so he probably won't be ready until tomorrow, but we were really excited.

They had started feeding him two days ago and his tummy was still looking OK today, so they decided to increase his feedings
from 1 mL to 2 mL. Hopefully he will continue to tolerate the feedings and they will be able to increase them even more soon. It would be such a blessing to get him better and get this nightmare behind us.

We drove to Price to visit my parents after we left the hospital. We spent a few hours there and then drove back. It was good for the kids to be able to see their grandparents and cousins.

April 16, 2011 - 42 Days Old

Well, it hasn't exactly been the vast improvement we were hoping for a couple of days ago, but Aiden is making some slow progress. They have been able to turn his oxygen settings down the past few days, so that has been a step in the right direction. His lungs are looking a little better on the x-rays, too. He still has a lot of junk in his lungs, but they are improving.

His tummy was doing better, so they decided to start some small feedings yesterday to "prime" the bowel. So far, things are still looking good. His tummy isn't filling with air yet, so we're still crossing our fingers that everything will work right this time and he will be able to start regular feedings. The poor little guy has been through enough.

The doctor said that they haven't been able to detect a fungus in Aiden's cultures, but she said that doesn't necessarily mean he doesn't have a fungal infection. What they do know is that he started to turn a corner when they started giving him the antifungal medication. They are planning to keep him on the meds for a while even if they don't detect a fungal infection.

I'd like to write more, but I'm struggling to keep my eyes open. I'll write more tomorrow.

April 14, 2011 - 40 Days Old

Today we finally heard a bit of encouraging news. After several days of high-level support on the breathing machine, they were finally able to turn Aiden's support levels down today. This morning when we got to the hospital, they had turned the pressure down and his oxygen level was at 40%. For the past several days they haven't been able to get him down any lower than 95%, so this is very good news.

On Tuesday, we found out Aiden has pneumonia, and yesterday, the neonatologist told us that it has damaged his lungs pretty severely. They have also been checking for a possible fungal infection. They haven't been able to grow any fungus on the cultureyet , but they have been giving him antifungal medication just in case, and it seems to be helping. The neonatologist that was on today told us that he seems to have turned a corner just after they started giving him the antifungal meds. They had seen a mass in Aiden's heart that they thought was a fungus, but they called the cardiologist in to do a secondary echocardiogram and it wasn't there anymore.

Aiden's tummy is looking better too. They have been suctioning out the gas in his bowel through an Anderson tube. That has prevented his bowel from blowing up with air like it was doing before. Yesterday, they turned the suction off and just let it drain with gravity. That worked well enough that they removed the Anderson tube this morning and just put in a regular feeding tube, which is smaller than the Anderson. While he is not being fed, the gas in his belly can drain out through the tube. They are going to watch him for a little while to see how he tolerates the smaller tube. If he does well and the gas doesn't build up again, they will begin feedings again.

So, today was the first good news day for quite a while. The doctors and nurses all seem to think Aiden has turned a corner. I think it may be a little early to say that yet, but I can't tell you how much we hope that is the case.

Sick Little Guy - 36 Days Old

Today was a stressful day. When we called the nurse this morning to get an update on Aiden, she said that he had had a really rough night. His right lung had almost completely collapsed and they were having problems keeping his oxygen saturation up where it needed to be. They tried him on three different ventilators and finally settled on one that seemed to be doing the job. Even on the new ventilator, they had to keep his oxygen level at 100%. The nurse said they were planning to do an echocardiogram to look at his heart.

Doing the echocardiogram

We decided to skip our stake conference and head to the hospital as soon as we could get ready. When we arrived at the hospital, we saw three ventilators, one of which Aiden was hooked to, sitting at his bedside. He looked swollen again. He was still on 100% oxygen, but was sleeping fairly peacefully. The nurse said that he has pneumonia and they were thinking he may have a fungal infection, so they had started him on an antifungal antibiotic. After we had been there for a while, the head NICU physician, Dr. Minton, came in to do the echocardiogram. As he and Dr. Gerday, the neonatologist, looked at the screen, they could see a mass at the opening of the inferior vena cava. They said it was either fungal growth or a mass of fibrin, the mesh structure in blood that aids in clotting. The mass should clear out if they can get the fungal infection under control.

Machines, machines, and more machines

Aiden still has the Anderson tube in his belly to suction out the excess air. I asked the doctor if he thought the fungal infection is contributing to the problems with his bowel and he said he didn't think so. Still, if they can get the respiratory problems resolved, they will be able to concentrate on the bowel issue. As we were getting ready to leave, they decided to change Aiden back to the oscillating ventilator. To to that, they had to change his breathing tube. It was really difficult for Amaraa to watch and she left crying. When they finished intubating him and got him positioned normally in bed, we decided to leave. We called and talked to the nurse this evening and Aiden was still on 100% oxygen, but his oxygen saturation was in the high 80s (that's good) and he was doing much better overall than last night.

After we got back from the hospital, we watched "Tangled" with Skylar and Jasmine. It is the first time any of us have seen it. What a cool movie! I slept through most of it, so the kids wanted to watch it again after I woke up from my nap. It was fun to spend some time with Sky and Jazzy. It always seems like we can never spend enough time at the hospital with Aiden and we can never spend enough time with Sky and Jazzy at home.

Here We Go Again - 35 Days Old

Well, we thought things were improving with Aiden. They seemed to be progressively getting better over the past few days, but when I got to the hospital this morning, the nurse said he had really had a rough night. His respiratory problems were starting to reappear, and his bowel was filling up with air again. To stabilize him, they stopped his feedings and turned the pressure on the ventilator way up. They were able to wean him back off of those high settings a little bit throughout the day today, but even then, they had to keep them pretty high. The neonatologist told me that they now think the respiratory problems are being caused by the bowel problem. He had called the pediatric surgeon at Primary Children's Hospital for a consult and was waiting for him to look at Aiden's latest x-rays and call back with his thoughts. He also ordered a gastrograph, where they inject contrast dye into his colon and large intestine. This allows them to see the structure of the bowel better. He thought there was a real possibility that the pediatric surgeon would call before the study and tell them not to do the gastrograph and just transport him to Primary Children's Hospital for possible surgery. I called Amaraa and told her that she had better get herself ready so that we would be prepared if they decided to transfer him up to PCH.

I went and picked Skylar up from school and went home. Amaraa and I decided to run some errands as we waited for a call from the hospital. The gastrograph was scheduled for 3:00 PM and I wanted to be at the hospital for that. We ran our errands and were surprised that we did not receive any calls from the hospital. We headed home and picked Skylar and Jasmine up and then drove to the hospital. The kids couldn't go into the NICU, so Amaraa and I took turns tending kids in the waiting room while the other one of us went in with Aiden. Amaraa wanted me to go in first because she was a bit uncomfortable with the gastrograph. When I went in, they had already started the gastrograph. They had Aiden lying on a table within a special x-ray machine. They had two large monitors set up where they were watching the x-ray images in real time. I was standing next to the neonatologist and when they were finished, the pediatric radiologist came over to us to give us a report. He said that he didn't see any structural problems, constrictions or perforations in the lower bowel. The neonatologist explained to me that with this test, the radiologist can only see up to the valve between the large and small intestines. She did say, though, that not seeing a problem in the lower part of the bowel is very encouraging because it is in the lower bowel that they see the majority of constrictive and structural problems. They are going to let him rest for a few days and then do a similar study on the top section of the bowel.

We still don't know what's wrong with Aiden. The neonatologist said that it could just be that he was born early and his bowel hasn't fully developed yet. Even though we aren't any closer to figuring out what the problem is, at least we are ruling out some of the things that it isn't. One thing is for sure, though: Aiden is a pretty uncomfortable little guy, and that's hard to watch. I wish they could just figure out what is causing the problem and get it solved so we could work toward getting him healthy and getting him home.