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.

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.

Sick Little Guy - 36 Days Old

Today was a stressful day. When we called the nurse this morning to get an update on Aiden, she said that he had had a really rough night. His right lung had almost completely collapsed and they were having problems keeping his oxygen saturation up where it needed to be. They tried him on three different ventilators and finally settled on one that seemed to be doing the job. Even on the new ventilator, they had to keep his oxygen level at 100%. The nurse said they were planning to do an echocardiogram to look at his heart.

Doing the echocardiogram

We decided to skip our stake conference and head to the hospital as soon as we could get ready. When we arrived at the hospital, we saw three ventilators, one of which Aiden was hooked to, sitting at his bedside. He looked swollen again. He was still on 100% oxygen, but was sleeping fairly peacefully. The nurse said that he has pneumonia and they were thinking he may have a fungal infection, so they had started him on an antifungal antibiotic. After we had been there for a while, the head NICU physician, Dr. Minton, came in to do the echocardiogram. As he and Dr. Gerday, the neonatologist, looked at the screen, they could see a mass at the opening of the inferior vena cava. They said it was either fungal growth or a mass of fibrin, the mesh structure in blood that aids in clotting. The mass should clear out if they can get the fungal infection under control.

Machines, machines, and more machines

Aiden still has the Anderson tube in his belly to suction out the excess air. I asked the doctor if he thought the fungal infection is contributing to the problems with his bowel and he said he didn't think so. Still, if they can get the respiratory problems resolved, they will be able to concentrate on the bowel issue. As we were getting ready to leave, they decided to change Aiden back to the oscillating ventilator. To to that, they had to change his breathing tube. It was really difficult for Amaraa to watch and she left crying. When they finished intubating him and got him positioned normally in bed, we decided to leave. We called and talked to the nurse this evening and Aiden was still on 100% oxygen, but his oxygen saturation was in the high 80s (that's good) and he was doing much better overall than last night.

After we got back from the hospital, we watched "Tangled" with Skylar and Jasmine. It is the first time any of us have seen it. What a cool movie! I slept through most of it, so the kids wanted to watch it again after I woke up from my nap. It was fun to spend some time with Sky and Jazzy. It always seems like we can never spend enough time at the hospital with Aiden and we can never spend enough time with Sky and Jazzy at home.