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 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.

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.