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.

Brendan’s surgery went well today, although it was a very very long wait to hear the news. The banding is complete and they restricted the flow through the pulmonary artery quite a bit.
Once we heard that surgery was done, we were asked to leave his room while they brought him back and got him all reconnected. There would be a large group of people involved and we would be in the way.
Over an hour and a half later, Bill went to check to see if they had forgotten us.
The delay came in the switch over to an all new bank of high-tech IV pumps. There are putting these new pumps through a trial this week and since he was being all disconnected, they switched his all out.
He is so difficult to look at post-op. He is absolutely full of fluids and his whole body is swollen up. That swelling should be gone in a few days and the lasix that he is on will help.
He has a few new things now –
His IV that they just finally got restarted in his arm went bad again. They tried to get one started in his scalp and couldn’t, and finally got another in the arm.
They opened his chest for surgery, so he has a nice new scar and dressing and a drainage tube coming out. They also added another new central line with two lumens. This one was put in to his chest while he was under anesthesia and it goes straight in to his heart and ends in his right atrium. He also has these little leads attached on both sides of his chest so that if it were necessary, they can connect an external pacemaker and control his heartbeat.

We called for an update tonight at 10PM and he was still stable and they were happy with his numbers. They are even talking about trying to extubate him tomorrow. We are going to try to get there early enough for rounds so that we can be there when they make the decision.

Trevor had a wonderful day, he doing what babies should do – eat, sleep & poop.

Bill and I are fully exhausted, mentally and physically. It was such a long day of waiting and wondering. I felt a lot of guilt about leaving the hospital and not staying with Brendan, but getting home to get food and rest and spend time with Trevor was important too. I can’t believe the boys are 3 weeks old now and we are starting the 4th week of our adventure.

Pictures

Brendan pre-op – they tried to put one of their paper ID bands on him, but it is a little big.

Brendan post-op 1

Just when you thought there could not be any more tubes and wires, they come up to do an EKG. Once all those were connected, he truly looked like a spaghetti monster.
Brendan post-op 2

Brendan’s new bank of IV pumps

If your baby’s changing table does not have a mirror on it, you should seriously get one. Trevor is hypnotized by his reflection every time he is on the table.

I was taking too long, Trevor is begging for food like a little baby bird.