Brendan is doing much better tonight, already having lost 4oz of fluid (they weigh his diapers!) since his dose of Lasix at 3PM. He’ll get a new dose 2x a day. The doctors must not have connected this afternoon so we did not get any news about his treatment plan. But his blood gas test came back looking good and the doctor on night rounds was positive. They even decreased the rate on the ventilator to let him breath more on his own. No matter how much I worry about him, I know that he is safe and stable and he will be OK. I just hate to see pain on his tiny face, and I am glad he won’t remember all of this.

Trevor did move to his open crib tonight and got real clothes on for the first time. He was able to take 8cc of milk from the bottle before he started breathing too fast again and the rest went in the tube. He is up to 35cc, still increasing until a max of 43cc (about 1.5oz). His IV is out so the only thing still connected to him is a few leads, pulse-ox, and the feeding tube.

Pictures Update!

Brendan gets a few looks around, feeling more alert and interactive more each day.

Trevor gets to wear clothes and doesn’t know what to think about it

This preemie outfit is maybe a little baggy

Medical Update

Today was kind of an emotional day in the NyICU. Brendan has made great improvements related to his prematurity and his lung injury, but now we are going to have to face the symptoms of his heart defect.
He is still on room O2 levels and he seems to be doing fine on them. He is still getting his 5cc of breastmilk every 3 hours and is tolerating that well.
But, as expected, he is getting high blood pressure going in to his lungs and it is creating pulmonary edema (build up of fluid in the lungs), and the pressure is being lost to the rest of his body. These are the symptoms that the doctors were waiting to see. For now the doctor has ordered Lasix (water pill) to help him try to get rid of the excess fluid. The ventilator will continue to do its job and they will keep suctioning the buildup. Even though his neonatologist was there today to talk to me, she had not yet been able to meet with his cardiologist so that they can formulate their plan for treatment. It is possible that he will go for the banding operation, or it is possible that this condition could be treated with drugs until he has his first major procedure. We will be back to the hospital tonight and should have more news then.
They will be holding back on changing anything else with his feeding/ventilator settings until they see how the Lasix works for him.
He is not needing the warmer to be on anymore, he is a big enough boy that he seems to be maintaining his body temperature.

Trevor is doing very well, and is maintaining his temperature too. He should be moved in to the regular crib tonight since his light therapy is complete.
Trevor’s only real problem left is his tachypnea – he is breathing well to keep up his oxygen saturation, but he goes back and forth between regular breaths and fast, shallow breathing. When he breathes so quickly, he is not able to take a bottle properly and risks choking. They are giving him his milk via his feeding tube for now until they see his breathing regulate a little better.
A couple more weeks of development is probably all he needs for this, they won’t be treating it, just watching him carefully. He is doing really well on the feedings and his TPN (IV feeding) is being discontinued tonight at midnight. They will leave the IV port in for a while just to be sure he takes well to it, but hooray for one less connection!!
There was talk of Trevor being moved to a different nursery for more stable babies, which is the gateway to coming home. But he still has a few weeks in for certain while he resolves his breathing/feeding issues.

Pictures Update!

Brendan getting festive for Halloween!

Trevor knows he is cute. (the line across his head is a shadow from the bed)

I love this blanket, shame I can’t seem to get any photos without wires.

Medical Update
The boys are doing well today! Brendan had a good morning. He is down to room air (21%) on his O2, and now is just using the ventilator for breathing assistance to train his lungs and to help them expand. He may go up and down on the O2 as they try to wean him off, and it could be a while before he is ready for breathing on his own. But he is taking little steps.
He got his first milk feeding today – 5cc straight to the belly with the tube and he seems to be tolerating it well. He is off of the light therapy for now. As of 7am he hasn’t had any pain meds and he seems to be resting comfortably.
One of his arterial IV lines got kinked or pulled in the night, but they felt that he had grown stable enough that he did not need for it to be replaced. So no constant blood pressure monitoring, it will just be checked occasionally.
He was kind of awake this afternoon, opened his eyes quite a bit and is moving some. It was great to see, especially since he does not seem to have pain.

Trevor is up to 26cc of milk, but it having trouble finishing it on the bottle. They are giving him a few feedings through the tube to let him grow stronger with the bottle at his own pace. It really wears him out. As he increases food, his IV fluids goes down. In an ideal case, he could be totally done with the IV by Wednesday! It will probably be a while longer, we won’t be rushing him.
He was still getting his light therapy today, but when he is done they will be moving him from the isolette to an plain open crib. His IV line has been moved from his wrist to his foot so we can bring in some jammies for him to wear and they will swaddle him up.

The visit went well, the boys are in separate pods right now due to staffing arrangements, but they are still real close together for visiting.

General Update
It has been an exhausting day. I think that I have been getting around really well, but possibly overdoing it. My lower back is screaming at me and I imagine it has to do with the fact that each of my boobs weighs more than my babies. My feet have no business being so swollen so I am going to put them up for a while.

We’ve calculated that it is costing $9.70 in fuel to make one round trip to the hospital in my car, $9.20 if we take Bill’s truck which is just harder to park! It is a shame the light rail system is not just a little more convenient to our house.

Pictures Update

Brendan is finally able to open his eyes a bit

I wouldn’t be happy with all the tubes either

Feeding time, certainly not glamorous, but he gets milk in his belly

Maybe they will let him use a crazy straw instead

He really was alert for quite a while today, and it was nice to see.

Trevor snoozing after a bottle feeding

Bill wants to snooze too

Taking a bottle is seriously hard work