Medical Update

Not too many changes since last night, Brendan is doing fine on the Milrinone. He is looking a little more fluid balanced this morning, his skin isn’t as baggy and wrinkly but he doesn’t look puffy either. His doctor was pretty frustrated this morning, she was hoping to see his numbers improving more than they are. He had a little fever last night and although it went away quickly, they put him back on a round of antibiotics just to be sure to catch infection early if there is one. His PICC line has a clotted port, so they were going to put in a new one last night. Because of the fever, they waited and will probably be putting it in just after I left today. They did put a new arterial IV line in his leg to be able to have access for blood draws and pain meds because the one good port on his PICC is for the Milrinone right now.
He had another chest and abdomen xray this morning, when we go back later, we will hopefully get results of that.
He was very alert during rounds today. They did give him some Fentanyl earlier when he seemed a bit agitated. No news yet on the surgery, hopefully we will know today or tomorrow what his date is.

Trevor is doing great. He set a new record today and took 28cc of his milk from the bottle. He needed a few breaks to catch his breath and then he got too tired and fell asleep. They gave him his last 15cc through the tube. He is practicing and improving, that is all we can expect from him. The bursts of rapid breathing are getting fewer too. They are going to give him a few extra calories in his food by mixing a supplement in to his breast milk. That should start tonight and then maybe he will put on a little more weight.
He is making smelly diapers really well! His bilirubin levels are a little high, but they expect that he will take care of that himself soon. He will just look like a little pumpkin for a few more days. Nobody told him that Halloween was over!

Bill and I will be going back to see them again tonight, but we are not expecting many changes.

Pictures Update!

Tubes, wires and tape still, we can’t wait to see it all go.

Trevor doesn’t cry to much, mostly complains when he gets his diaper changed. He just finished eating and is wiped out.

Medical Update

Brendan had another echocardiogram this morning. He is still getting rid of fluids quickly and has not been back on the Lasix. They have started him on a new medication called Milrinone to try to strengthen his heartbeats and help the heart rate slow down just a bit. The high pressure to his lungs is still causing fluid build up.
We got a phone call from the cardiologist while we were visiting and he believes that they will most likely be doing the pulmonary banding surgery as early as next week, depending on how he does through the weekend. They were hoping to wait several weeks for him to be bigger and stronger, but because he is not able to eat and grow until he has it done, there is no sense waiting.
They have discontinued the milk feedings and he is back to TPN. We were told that the stomach and digestive system is the last area to get oxygen from the blood stream and since he is not oxygenating well, they will not strain him further with food. He did have several bowel movements and has passed most of the meconium.
Getting the banding means that he will be transferred to the Children’s Hospital. Once we have a surgery date, we can plan on him moving over there the day prior to the procedure.

The good news is that this procedure is minimally invasive and is done through a small opening in his left side. The recovery time is quick and they expect to see full results in a week or less. Barring complications, once this surgery is complete, he will be able to start to eat and grow and work on coming home. They expect him to have a few months at home before his first open heart, the Glen operation. We will worry about him, but we are eager for this progress and still can’t wait to see him off the ventilator so we can hold him.

Trevor is doing super well, he just continues to work on his eating and breathing. He hasn’t been as interested in the bottle or pacifier, but he is getting his max dose of 43cc of milk through his feeding tube and just keeps practicing. He will stay at the current hospital until he comes home, so it is going to get interesting.

Just a few pictures today:

Brendan’s bed

I’d wear my hat like this too in order to get a good nap in that bright room

I can’t believe it has only been a week. So much has happened that it feels like the boys have been with us for much longer. My hospital stay seems like months ago.

We got back from a late visit tonight and things are well. It seems like we are going to be in kind of a holding pattern this week, waiting for things to stabilize. Brendan did a little too well on the Lasix and now they are withholding any more doses until they can equalize fluid intake/loss. The doctor chatted with us tonight and said that they will try to increase milk feedings so that he can grow a little stronger. When they find the right balance, they will move forward with treatment. In the meantime, they just are keeping him comfortable and keeping his lungs suctioned. His ventilator is going to stay for some time. They will manipulate the IV fluids, feeding, and Lasix until they find what works best. He opens his eyes a lot more now, and we have been there to talk to him as much as possible.

Trevor is on the fast track! He got moved today to the intermediate nursery area where the stable babies go. It is a smaller room with a different nurse to baby ratio. It is a quieter place where he can rest and work on his eating skills. Tonight, he was only willing to take about 13cc through the bottle and the rest went in the tube. His breathing has improved though. His plan pretty much includes eating/breathing practice. Once he has that mastered, they will talk about sending him home! We’ve been told that it is 34-36wks equivalent gestational age when babies develop those skills so he is ahead of schedule.

Pictures Update!

Brendan sleeps under little tents to keep his eyes protected from all the lights.

Trevor is a really good sleeper, let’s hope he stays that way! There is so much noise and commotion in the nursery, I hope he can sleep when it is quiet.

Give him a few more weeks, it will fit!