Even though Trevor decided that he should be awake most of the night, we still had a pretty good day and I managed to get a nice long nap in this afternoon.

Brendan is still a few days from coming off of the ventilator, but we are happy with his slow, steady progress. The settings on the vent today are the same as what they had tried this weekend when he didn’t do well on them. That shows he has made improvements.
The respiratory therapist is concerned about his having been on the vent since birth, and is working to get him in the best shape to breathe on his own.
He is responding to the increase in Lasix and has shed some more of his puffiness, but his lungs’ wetness hadn’t really changed on the xray yet. He is up to 12cc of milk as of noon today, but instead of giving it to him all at once every 3 hours, they will most likely start pushing it in a very slow continuous feed. The doctors believe that this will give him a better chance of absorbing more of the nutrients and fluids before it all just ends up in his ostomy bag.
The doctors also want to start seeing the IV lines going away as his medications are reduced. They stopped the Milrinone and today was his last day of post-op antibiotics. They are pulling the pacemaker wires today and will consider removing the atrial line in the next day or two. One doctor wanted it gone today but the surgeon wanted it to stay just a little longer.
Brendan’s major event today was getting a new bed. It is almost the same as the old one, a little newer model, but the key is it has a built in scale. They will be able to do their weighings now without disturbing him as much.

Trevor is spending a lot more time awake in between his feedings. He is still being pretty mellow, but he makes tons of cute little sounds. He growls, grunts, “laughs” and makes little sounds like a goat. As I type this, he is has hiccups.
The pediatrician recommended that he start taking vitamin D supplements so I bought the drops. Even though he made a really strange face initially, he seemed to kind of like them.

Mom bought some gorgeous ribeye steaks tonight and we had some pumpkin pie, who says you have to wait until Thanksgiving to eat pie? The pumpkin pies from Costco are amazing, especially when topped with real fresh-whipped cream!!

The syringe of milk taped to the bed is being gravity fed in to his NG tube

Brendan has another new buddy today, a Greyhound greyhound. Makes me wonder if he didn’t hop a bus last night and head to the casinos.

Bill helps with the bed swap-out. Brendan handled the chaos very well and settled down quickly.

Babies video chatting! Trevor is “Hanging Out” with 3 of his cousins in Illinois, but his food coma got the best of him.

Baby with a bear butt!

The start of the fifth week and we are making small steps in the right direction. We were eager to see how Brendan did on the vent weaning yesterday, but we were skeptical that they would be ready to extubate today. We are so excited for that tube to come out, but we can’t rush him.
He is still taking all of his breaths on his own, but when the pressure settings are turned down he doesn’t take deep enough breaths to sustain his oxygen saturation so he starts to breath very rapidly and his heart rate goes too high.
The respiratory therapist is going to keep working with him to help strengthen his diaphragm and push him to breath more deeply. It could be a few more days on the vent while he gets some more training.
He still has pretty wet lungs as well, so they are increasing the Lasix to help him try to get rid of it. The cardiologist is very happy with how his heart is doing and does not think the fluid in his lungs is still related to his heart defect. They are very pleased with how the band is working and really liked what they saw on the echocardiogram. They are going to stop the Milrinone today.
He still has general edema that is slowly going away as well. If the Lasix works, then the lungs should dry out more and he will have a better chance of getting off the ventilator.
He is up to 10cc of milk every 3 hours now and he is tolerating it well.

Brendan is wrapped up like a burrito

This is all we can do to comfort him and let him know we are there.

We replaced the giant fish tank in the living room with fish-themed baby things! I am sure the babies would have loved the real tank too.

Trevor likes to have his picture taken about as much as his dad does.

Monkey pants!

The end of another week!

We all piled in the car and headed to the hospital today. Trevor had an appointment with the cardiologist today for an echocardiogram. They were checking to see if his ductus arteriosus had closed. This is a blood vessel that connects the pulmonary artery to the aorta to allow blood flow to bypass the lungs while the baby is in the womb and it should naturally close after birth. In preemies, it can be slow to close but Trevor is looking good.

Brendan had an echo today too, but in his case, they were looking for any signs of fluid build up around the heart and they were looking at his pulmonary banding. The tech couldn’t tell me much, we have to wait for the doctor to read it, but I believe everything looked really good there.

In rounds today, the doctors all seemed to think that Brendan was making good progress. He is in auto mode on the ventilator with only a small amount of pressure support which they are weaning throughout the day. This pretty much means he is breathing all on his own, the ventilator is just pushing each breath a little fuller on each inhale, and is just there as backup if he would stop breathing. We are eager to get to the hospital in the morning to see if they are going to make an attempt to extubate tomorrow.

Brendan gets his echocardiogram:

There is not much room on his chest to use the ultrasound probe, and now he is all covered in gel.

Trevor is not allowed to visit his brother in his room right now. So he is hanging out in the family lounge with Bill while Brendan’s echo is finished.

At home tonight – our new kitchen sink has the “baby bathtub” feature. The small side sink is the perfect size for Trevor to float in and he seems to really like it!