We had another good healing day today. Brendan is making progress bit by bit. He is down even more on the ventilator today. They are still weaning from the Fentanyl and hope to bring him off it slow enough that he does not have serious withdrawal symptoms. They would prefer to not have to use other drugs to wean him completely.
They should be removing the chest tube tonight as he is no longer draining any fluid. They have removed the dressings on the incision so that it can start to heal.
It is going to be another week before they think that he can start eating again, they want to give his gut more time to heal now that it is getting more adequate oxygen flow. His bank of IV pumps has gone down again and now he is just on IV nutrition, pain management and the Milrinone. He also gets a bit of a blood thinner to help keep his central lines clear.

The swelling has gone down even more, the Lasix is helping a lot. He is looking more like himself. The older the boys are getting, the more we see a resemblance between them as well.

He’ll be proud to show off the big chest scars later when it impresses his girlfriends

His guard dog beanie baby had an assistant for one night, a little husky dog beanie that was helping to position his legs. When we got to see him this morning, the husky apparently had been contaminated. Poor puppy.

Trevor is doing very well. He is going to have an echocardiogram on Monday just as a final checkup since he was a preemie. There are natural shunts present in fetal hearts that change the blood flow while the babies are developing and these things close on their own at birth. They are pretty much just checking to see if his have closed properly.
He also is going to get a home visit from his physical therapist Monday afternoon to see if he needs any more therapy work.

Trevor’s biggest worry is that Gramma squeezes him a lot!

Trevor is ready to go on the next motorcross ride!! I think Bill doesn’t have to worry about Trevor borrowing gear for a while.

Things were well today. We went to see Brendan first and he is look MUCH better than yesterday. The swelling has gone down quite a bit and he has better color.
Today the only changes are that they are weaning him off of the Fentanyl and that they are reducing his ventilator settings. He had a good day and is fairly comfortable.
We got a visit from his Physical Therapist who works on helping position him and is teaching him the same things that Trevor got to learn last week about “finding his center” and feeling boundaries. He got another beanie baby toy to help position him and keep him comfortable.
The cardiologist is really pleased with his progress and wants him to have a few more days like today to make improvements.

Trevor had his first appointment with his pediatrician today. He gets an A+ on his checkup. He is a super star, doing very well. They measured him today at 20inches and 5lbs 11oz! He is growing fast!
He is keeping to his schedule fairly well too. He still likes to be swaddled, but when his nap is over, he is an expert at escaping the blanket completely. I am going to have to set up a time lapse camera to see how he does it.

Here he is waiting at the doctor’s office:

Trevor shaking off the last of his swaddle blanket and making his cute sounds:

So we thought last night when the nurse mentioned extubation for Brendan that it was a little bit shocking. We made it to the hospital in time to hear the doctors’ rounds today and they all agreed that while most children that go through the PA banding surgery can be extubated the next day, Brendan was a different case. He is on pretty high vent settings and they are going to go for a slow wean before they do anything drastic. Their first goal is to get him off of the blood pressure medications and get him through his antibiotic treatments. He is doing very well for a baby just having had his procedure and he is starting the recovery process.
His cardiologist gave him two big thumbs up today. The surgery nurses said that his gut incision is healing well. His ostomy is working.
He still has significant edema, especially in his head and face but it will continue to go down. This is normal too, it just will take time.

He was awake and alert again this morning and seems to be fairly comfortable. He only cries when they clean his chest tube or try to move him too much.

Trevor is doing very well at home. We are very lucky that he is such a good baby! We are also very lucky and grateful that Mom is here to take care of him while we make trips to the hospital. She is working hard to lighten the load for us and I even got a nice long nap in this evening.

We gave him his first bath at home tonight! There was no weird nurse singing in his ear and he still didn’t cry, he seemed to enjoy it.

He did try to eat lots of bubbles.

I bought this big fluffy bear almost 5 years ago in an after-Valentines-day clearance at the grocery store in a total impulse. My hope was that he would be my prop for taking photos with a baby to be able to see the baby’s growth over time in relation to the bear. The bear sat on a box in the corner of my room all this time getting covered in dust. No more neglect, he is ready to get to work! Bear & a baby photo #1! Hopefully there won’t be too many of these with just one baby in it.

The dogs are still trying to figure out just what is going on and why this pink squirmy thing is still here.