Our home care nurse paid a visit today. Brendan’s weight is exactly the same as it was on Tuesday. He was at the end of his break between feeds so he had a very empty belly today. That can really make a difference when you only weigh 7 pounds. The nurse was happy that there was no weight loss, and we will see what he weighs again on Monday. A few extra days will be good to see real change.

Because the oxygen causes Brendan’s nose to be so dry and his nasal passages to get thick, the nurses recommended hot steamy air every once in a while. I took Brendan in to the bathroom while I ran a hot shower and steamed him for a while. He was very comfortable in there until I opened the door to get my camera and let it the cold air. So we have unhappy Brendan picture.

Aunt Heather #1 bought Brendan the same swing that he had in the hospital and it arrived at the door today. It is a gentle rock vs the big swing and he really likes it. He spent some time in there happy today until he got too hot.

Keeping Brendan cool is a challenge. He wants the confinement of being swaddled, but he just gets so sweaty and hot in blankets. I found a compromise that seems to work for now. If I put him on his side and bolster him with his nest pillow, his hands stay “centered” like the therapists want. Gravity gives him the confinement of his arms, and his skin is able to breathe. I would think he would be cold, but he has been sleeping comfortably like this now for an hour.

“I got the whole bed to myself, I got the whole wide bed to myself” (Trevor got to sleep alone for a while during Brendan’s swing time)

Trevor’s game

Nothing new to report today! We are just trying to stay sane and rested. Brendan had one good stretch of quiet, awake and comfortable time tonight. We are grateful that he at least sleeps well. We are settling in to the rhythm of his schedule and Trevor is adapting. He makes sure to wake up right when we have our hands full with Brendan.

Brendan got a new feeding tube and fresh tape on his face.

It’s not easy carrying around all this cheek!

We’ll get another home visit and weigh-in tomorrow.

9 weeks behind us now, looking forward to all good things to come in the new year. Last night was probably the best night since Brendan came home, Bill and I were both able to get 3hrs of sleep in one stretch, and then a couple more later in the morning. We slept in until about 8am and then the chaos started with the phone ringing and dogs barking and babies crying.
Brendan had some nice long stretches of rest and I was able to get a few naps in today too. When he was awake, he had a few mega-meltdowns but we were able to get it under control. We were extra mean to him today, changing his ostomy gear and trying to scrub off more adhesive residue left all over his skin.
What is encouraging is that when he has his super meltdowns, his heart rate is not escalating as high as it was. Instead of hitting 210+ bpm, it is maxing out at around 190. Hopefully his heart will continue to not work so hard, and we will be closer to getting off of the oxygen.

Trevor has had some bouts of painful gas and has been a little more clingy today. He has spent a lot of the day awake but was mostly mellow. He is content to hang out on the pillow as long as he is close to me. He is getting a lot more squirmy and so pillow time is going to be less and less. He even rolled over on his own once during a bout of gassy back-arching.

This is how I felt when I woke up this morning too

He really is adorable when he is not crying!

Cute sleepy Trevor was only pretending to sleep

“I don’t think anyone will notice if I just grab this thing here and pull”

The boys share some awake time in the bouncy chairs

There are a few pictures I forgot to include in the previous posts. Christmas Eve, we spent time with the family on Google Hangout and I took a few screenshots. There was a “Reindeer” button that would add nose and antlers to detected faces in the chat. It did a pretty good job of tracking movement, and there were a few different reindeers.

On Dasher and Dancer and Prancer and Trevor..

Aunt Erin and Cousin Caleb

On Christmas Day, Trevor spent some pillow time chatting with Gramma.