A new plan

Jordan and I are returned from our night away at Point No Point, better rested, happier, and ever so slightly less stressed (we'll see how long it lasts). Asher didn't have the greatest night while we were gone, but thankfully the real shenanigans never started until after we called so it all worked out that our nurse didn't need to lie to us or phone us with bad news (thanks Krista!). After bloodwork and a chest x-ray Asher didn't look any worse for wear, thank goodness, but yet again no concrete explanation for his bad behaviour. A couple possibilities are that the high flow prongs he is on are shooting water up his nose and making him congested and rightfully angry, and/or that the way he is propped up to help with his reflux is causing him to slump down and not be in the best position to breathe. Either way, today's doctor thinks it is likely something mechanical so hopefully we can work it out. I am feeling a lot better that it seems like there is a plan to get his breathing sorted.

So first things first, get rid of the high flow and the shooting water. I didn't feel comfortable taking him right off and back on to low flow, so the doctors and the respiratory therapist (taking into consideration mom and dad's concerns) decided that the best plan would be to put him on CPAP for 8 hours at night, weaning him slowly night by night, using low flow prongs during the day. The CPAP will help with inflating his tiny lungs so that when he isn't on it he will have an easier time with his air exchange. Next step is to change his sleeping position and put him in some sort of sling so that he stays elevated for his reflux, but less likely to slump himself in half.

As for his groin problems, I won't go into great detail because one day 15 year old Asher will hate me for sharing. I will just say that an ultrasound and consult with a surgeon have determined that he should sort himself out in the next 6 months. That being said, he intermittently requires a diuretic to help with the water retention because boy, can it look scary down there.

His 5 day trial of reflux meds will end Friday so they will stop them and see how he does. Basically if he starts throwing up his feeds again they'll know it works, and if he doesn't, they'll know it wasn't really the problem. 

He seemed a lot more like himself today, back to being vigorous. Since his whole ordeal last week we haven't pushed much on the feeds, but today after bath (when they're usually too exhausted after their swim) he happily took a bottle with no effort. It was a proud moment, so hopefully he can start getting back on track and catching up to brother.

Nolan is a star in the eating and getting fat department. He is up to 4 oral feeds per day now. Today he breastfed for nearly half his feed, then he was topped up with a bottle. This is a first, as they are normally too tired to be bottled after nursing, so they are tube fed the remainder. Again, a very proud moment!

Other than that, Nolan is same old same old. The only change for him is that they stopped the caffeine he has been getting from birth, to help respiratory drive. Because he has been doing so well it will be pretty obvious if he starts misbehaving in the 3-5 days after it's out of his system, so they'll just restart him. But I am hoping he's now old enough to do without.

Anyway, no new pics lately, sorry about that, so here's a few more from our photo shoot a while back. Oh and let's not forget the best big sister around.

Asher

Nolan

"Sparkles" - her puppy name