I promise to disappoint with photos today. When we arrived at the hospital, Brendan was getting attention from the occupational therapist. She was working with him to use his thumbs properly. In the womb, babies keep their thumbs tucked in the palm of their hands wrapped in their fingers. Some ICU babies never break that habit and need little splints to make their thumb muscles grow properly. Brendan’s thumbs seem fine, they just need a little encouragement.
Of all the things he has been through, I never expected him to be getting thumb treatments. He sure showed the OT how well his thumbs worked when he hooked his feeding tube and pulled it right out. It is a good thing that we had practiced, Bill was able to put a new tube in for him. Training complete! Brendan must have known.

Once the OT was done with him, the nurse got him all cleaned up and he was quite agitated. Several of the doctors came in and unwrapped him to check him out and he was pretty mad about it. So we got him all wrapped up and settled in and turned out the lights so that he could rest. We all had a little nap together for a while. So when I got up, I had to snap a few pictures in the dark.

The news is awesome though. The high flow air blender is gone and the regular cannula is back and by the time we left, he was down to 0.4 L/m and his numbers were good. The surgeon gave the OK finally to remove the pacer wires from his chest! The cardiologist gave him the “raise the roof” hand gesture when he checked him out. His lungs sound good.
Because of all of the blood that they take for testing, and possible blood loss during the procedure yesterday, they decided to give him blood back.
Even as the transfusion was running, his oxygen saturations improved greatly. We are very excited to return tomorrow and see how he is doing. It would be a true thrill to see the cannula go away entirely and see that little boy’s real face.

Although he got a ton of fluids that might have something to do with it, his weight was up to 7.3lbs and he is tolerating his feeds very well.

Trevor had to go to his pediatrician to get his monthly Synagis shot to help protect him from RSV infection. He is a truly mellow baby even when upset at home, but that shot in his leg muscle set off a rage we have never seen before. He was so upset and his cry was very loud and strong. He calmed down quickly and was back to his normal cool self for the rest of the day. Trevor’s weight is 8lbs 10oz!!!!! He is working to pack on the double chin, the leg rolls and the super cheeks.

Brendan in the dark, I told you the pictures would be no good!

Bill and Trevor hang out in the corner and take a nap.

Trevor’s roly-poly baby figure is coming along well!

Seven week old babies!! We start the new week with another surgical procedure. Brendan had his atrial septostomy today. The whole family spent the day at the hospital with him and he finally went in to the cath lab at 2:30PM.

The doctors were eager to be able to get in to his heart and accurately measure the pressures across the chambers, arteries and veins. They can only guess at things by using echocardiograms. They did find that his pulmonary pressures fell within the desired range to go in to his Glenn procedure so the banding was tight enough. His mitral valve which connects the left atrium to the left ventricle does not fully open (a condition called mitral valve stenosis) but this was not causing as much back pressure in the left atrium as they had suspected.
By doing the septostomy today, they opened up the wall between the left and right atrium. It was 2mm in size and now it is measuring 9mm. This allows the blood to flow through the right side and through the tricuspid valve in to the left ventricle.
All this is to accomplish less back pressure in to the lungs and more blood flow to the rest of his body. It is pretty hard to explain without drawing pictures!

So over the next 24-48 hours, the goal for Brendan is to see better oxygen profusion to his organs and extremities and no desats when he is active or agitated. His heart should not have to work as hard. Then the next goal is to wean off of the oxygen entirely and breath 100% on his own with room air.

We were very excited to see that he came back to his room without the ventilator. They had no problem intubating and extubating during anesthesia. His numbers improved every minute he was back in the room.
The risks still are bleeding from the entry point in his leg and clotting. They give blood thinners to help prevent the clotting, but then the leg could bleed if not kept under pressure – but too much pressure could prevent circulation to his lower leg. It is a careful balancing act.

Trevor is a champion of support for his brother. He was extremely well behaved and we are grateful that we are all able to be there for Brendan without having to worry about Trevor staying home.

I am having a hard time keeping my eyes open so I am sure I left a lot out and rambled too much. We are all exhausted but we have made it over another hurdle and hopefully can get back to forward progress and get that baby home!

Brendan looked pretty good before surgery today. I held him for a good part of the morning.

The head of his bed is quite elevated and he rolled down the hill because his nest wasn’t in place!

Trevor has a cool new travel bed for camping in Brendan’s room all day. He slept well in it today.

Trevor sleeps best when there is noise and commotion. He was really relaxed today.

Brendan got to spend time in Dad’s arms for the first time today!

All of the boys together!

Trevor has a small problem with newborn size jammies – his long legs.

This is Brendan back from surgery. Every time we turn around, there is someone coming in and giving him gifts. Today he got a light up seahorse, another teddy bear and a book.

Trevor loves the swing and Brendan’s new seahorse.

I forgot to post this yesterday, we had to learn how to insert a nasogastric tube for feedings. We had to practice on this creepy looking doll. Before Brendan can come home, we each have to successfully take out and put in a feeding tube on him. Putting it in the doll was super easy, but the doll doesn’t stick out its lip and tremble its little chin, nor does it thrash and scream. I am not looking forward to putting Brendan through the practicing.

In other news, Gramma went to see her doctor when she got home and got new xrays. It turns out that she did indeed fracture a rib, they just missed it at the urgent care. She has a slow painful healing time ahead and just needs to be really careful.

Also Happy Birthday to Aunt Heather #2 today. Happy Birthday to Aunt Heather #1 on the 8th. Funny that their birthdays are close together too!

I wish that Oxiclean would pay me for saying this, but they haven’t.
This product works very well!

I had a white onesie that Brendan was wearing when his ostomy bag burst. It was dried with green and yellow poop so bad that the whole thing was stuck together on itself and stiff. (eating dinner? sorry) ((at least I didn’t post a picture))
On a whim, I bought the spray because I needed a spot treatment.

I sprayed it well and tossed it in the wash after a few minutes with some All Free & Clear detergent. The onesie came out looking brand new. Not even the slightest trace of the stain! I am impressed enough that I had to come and write this. Now I am motivated to go spill a bunch of other stuff to see what it can do! 😀