We finish off another week with a bit of a backslide. Brendan was having a tough time maintaining oxygen saturation today, especially while awake or agitated. He was having a good session with his physical therapist this morning, but the activity and stimulation made his numbers drop. The echocardiogram this morning showed further narrowing of the atrial septal defect, and his chest xray showed that this was causing fluid to build in his lungs again.
So, as we have pretty much expected this whole week, Brendan will be getting the atrial septostomy and he is scheduled for tomorrow at 2PM.

To keep him safe and comfortable until then, our old friend the high-flow air blender came back. He is on the bigger cannula again and is getting blasted with 5L per minute of warm humidified air. The pressure created by this high flow should help prevent the lungs from getting too wet again and hopefully the surgery tomorrow will correct the underlying issue.
Once he is stable with his oxygen, he will come home.
His weight was up today from 3.08kg to 3.12kg so his feedings are going well. In order to help his lungs stay clear, they are switching back to IV Lasix tonight.

We are hoping this is a minor setback and that tomorrow will be the beginning of another run of forward progress! We’ll be spending the whole day at the hospital tomorrow.

Boooo – high flow air blender returns at bedside

Back to the larger cannula that drips water in to his nose.

Trevor has been such a good boy with the hospital visits. We were able to spend the whole day with Brendan and Trevor stuck to his nice 3hr routine. He hit his big streak of awake baby time when we got back to the house, so we did a nice bubble bath and then got down on the floor for some tummy time and play.

Trevor likes his bubbles

We put him on the taffy puller to stretch him out, so he is a tall baby 😉

Tummy time is a lot of work!

Eins really likes the baby. He even came over to the blanket and curled up real close to us (he just wouldn’t let me take the picture that way). He likes to sleep close to wherever Trevor is. Quinn is not so interested. He secretly sleeps near the baby when we aren’t watching him but otherwise he just begs for a little more attention when our hands our free.

The boys and I had a quiet Sunday afternoon together while Bill spent time with his family and then took Heather back to the airport.

The only change today was moving Brendan back to bolus feeding instead of continuous. He gets his 3hrs worth of milk over a period of 2hrs with a one hour break. They wanted to do this for a day to help prep his stomach and then they will try bottle feeding again tomorrow.

Bill and I got a homework assignment. We have lots of reading to do about home care for Brendan. The fact that there is even talk about homecoming for Brendan makes me nervous and excited. We don’t know yet how long recovery will be after Tuesday’s procedure, it is all up to Brendan.

Trevor is such a good boy at the hospital. The long car ride knocks him out.

Brendan spends more time awake, buried in lots of covers in his big boy bed.

I would have been 39 weeks pregnant today, and the boys would have been crammed in super tight together. Instead of being smashed in a womb, they can be comfortable together in Brendan’s bed nest.

What we thought would be a pretty laid back Saturday turned in to a pretty exciting day!
Brendan got to eat his milk from a bottle for the first time ever! His neonatologist thought that he was ready, and since he had just had his 2hr pause in the continuous tube feed and he had an empty tummy, we were able to sit and give him 20cc in a bottle (2/3 of an ounce).

The nurse stayed to watch him to make sure that his coordination was OK and that his stats did not drop. Not only did he take to it right away, his stats actually got better and they had to turn his oxygen down from 0.3L/m to 0.2. He finished off the bottle and then went back in to his bed looking very relaxed. We were very proud of him and excited for this progress!!

He’s a pro already!

Nothing but cell phone pictures today, both of us had a hungry baby in our arms. Brendan has a happy food coma!

Drinking takes lots of effort!

Trevor had a lunch date with his brother, he ate his bottle at the same time with his dad. Then those two boys took a nap while I held Brendan.

The only other news today is that Brendan’s Methadone has been changed from every 6hrs to every 8hrs as they try to wean him. Still on standby for the Septostomy on Tuesday.