Joel - 9 weeks, 5 days

Well, it's official. Joel is very, very sick right now. His oxygen requirements went up overnight again, and the high-flow was not enough. They called us in around 10 to have a discussion with the neonatologist about intubating him. When we arrived, he was on high-flow plus a face mask that the respiratory therapists had been holding for 2 hours. We sat down with the doctor, our nurse, and our case manager. The doctor said she believes it could be pneumonia from aspiration. If it is not pneumonia, it could be some other lung disease which would be difficult to diagnose without a lung biopsy, which he could definitely not tolerate right now. After a long discussion about his history, how bad his lungs are, and how it might be affecting his heart, we decided to try CPAP first. If that was not enough, he'd have to go on the ventilator. It is really scary to see him so sick and know that he has so little to fight with. He sure has a fighting spirit, though, which he'll need.

Jake and I went to lunch after they had the CPAP in place. By the time we left lunch, they had put him on the ventilator. He was struggling on it at first, but I asked them to get him earmuffs (he is really sensitive to noise, and he's back in the noisy main NICU now where they can have more watchful eyes on him) and he improved. We are praying that he is suffering from pneumonia. Then, the antibiotics should help and the ventilator will reopen the damaged parts of his lungs.

They also redid his ECG. This evening, we were called in to meet with the cardiologist to discuss what he's been seeing. Joel is suffering from some thickening of the ventricular walls. On a scale of mild, medium, and severe, his is medium. However, a month ago, his heart looked normal. Something is causing it to thicken. Because his lungs and his heart are both sick, it is hard for them to know what is causing any of it. His heart could be strained from high blood pressure, but his has only been moderately high. It could be from compensating for his lungs. It could also be that the cells in his heart are miscommunicating and dividing too much. The latter would be a worst-case. His heartrate is much more comfortable now that he's oxygenating better on the ventilator and after his transfusion this morning. We pray that will help his heart heal.

To be on the ventilator, Joel has to be sedated like any adult would have to be to have a tube stuck in their throat. He is also on pain medication to alleviate discomfort from the tube. Normally, babies kind of just lay there when they're on the ventilator. Joel is obviously much more calm than usual, but he still was very responsive to our presence. He held our fingers, moved around when he heard us, and opened his eyes while I read to him. He is definitely still in there. I truly hope he is not suffering and is having happy, drug-induced dreams while he heals. We are terrified of the seriousness of his situation and that nobody really knows why he's so sick. We are treating the symptoms as best we can and hoping that it helps. We cannot think of it any other way. He just has to get better. He doesn't deserve this.

update: He is not doing well since we left last night. He is having trouble maintaining his sat's, and they have had to up the ventilator settings. Please pray hard for him to be comfortable and not suffering as we fight for him.

I'm not sure about this ventilator thing, but it makes breathing really comfortable. And check out my cool earmuffs!

They can sedate me all they want...I still know my Mommy and Daddy are there, and I want to say hi!

Mommy and Daddy think my IV guard makes me look like a bionic man.