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 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.

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.