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.