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 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.