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.

And just like that, Christmas has gone by! I want to continue to put up a daily blog post, although I am sure the posts will not be as interesting as we just work on growing at home and getting ready for surgery.

Brendan had a visit from the home care nurse and got a thumbs up from her. Everything looks good, we are doing a good job caring for him. He also weighed 7lbs 9.5oz which is a good gain! We sneaked Trevor on to the scale when the nurse wasn’t looking and he weighed in at 10lbs 5oz fully dressed and with a wet diaper. Still, he is over 10lbs for sure!

My daily life does not venture far away from the couch in the living room now. We have just let a marathon of Star Trek:The Next Generation play in the background most days while we feed, change, comfort, snuggle, medicate, repeat. Trevor continues to be a pretty happy and mellow baby and loves to be held as much as possible. Brendan is very irritable and uncomfortable most of the time, it takes very little to set him off in to a total meltdown. He likes to be held but often times it hurts too much and he gets upset. We try very hard to keep him cool and relaxed and loved but not manhandled. He likes to swing and he loves the bath, so we will have lots of bubbles in our future.
He had his final dose of Methadone yesterday, but we may have to add something less potent to help him with general comfort.

Trevor looks like a quiet little angel, but he is a pretty loud sleeper, either humming, grunting, or growling.

Poor baby Brendon makes very sad little faces.

He does have some comfortable alert time, like sitting on the pillow on the couch with me.

There is a Brendan in there in the swing, chewing on his pacifier sideways. However he is comfortable, we won’t touch!

Hopefully as he gets stronger, he can get off of the oxygen and 90% of what is bothering him will be gone. The mucous build up caused by the dry airflow really is bothersome. He is often hungry too, hopefully we can increase his feedings soon!