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.