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!