This was a very unusual holiday. We did not cook a traditional dinner, so there was no roasting turkey smell filling the house. My next door neighbors delivered a full blown hot turkey dinner to the door this afternoon, including all the trimmings. They put a lot of effort in to making us a special meal and we are very thankful.

Mom and I made the trip to the hospital this morning to see Brendan. The highways were super empty and almost creepy for a Thursday morning. The doctors got started extra early and visited Brendan’s room first, so we missed being there for rounds.

Brendan is looking pretty good today. He is on even lower ventilator settings and is tolerating his milk feedings well. They are going to add some fortifier powder to the milk in order to give him some extra calories to help him grow. The fancy new bed scale today says that he weighed 6.6lbs, but it is really hard to be sure with the nurse just trying to lift up all the tubes and wires.

The surgery team nixed the idea of removing the pacemaker wires. They really don’t need to be there, but the argument is that they are not doing any harm, so why take them out – just in case. The nurse did tell me that they plan to take out the IV line in his left femoral artery. One line at a time – it is nice to see something go.

They did switch him to the continuous milk drip overnight, but there was not really any difference in his output, so they switched back to every 3hr feedings. He is up to 14cc and going up by 2 more every 12 hrs to a max of 45.

Trevor is a growing boy and has finally outgrown his preemie 4hr feeding schedule and is hungry a lot more often. He’s kind of eating every 3hrs now, so it still works out pretty well to get some rest in between. Of course, Mom will sit and hold him for hours so I can get some sleep! He video chatted again with the IL and PA family members but was in a super food coma the whole time again. Of course, he wouldn’t make any of his adorable baby sounds until the camera was turned off.

I hope everyone had a wonderful Thanksgiving day!

Now some pictures!

Brendan’s Greyhound greyhound, henceforth known as Gg, is put to work holding up the ventilator.

It helps to have a team of hard working dogs on your side

Gramma talks to Brendan

The new bed is a little lower and if I drop the side, I can actually reach to smooch the baby.

One of the nurses made this for Trevor before he checked out of his hospital. Today is just a good day to post it!

I didn’t share the pumpkin pie with the baby, I swear

Serious food coma baby!

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!