All good things

All good things to report today :) Brinley is doing excellent (in Brinley terms at least). The swallowing diagnosis being the main cause of her big desat breathing issues seems to be holding up very well. The doctors put her on a medication called glycopyrrolate (branded name is Robinul) that helps thicken her secretions so that they do not so readily pool and run down her trachea. So far this seems to be working very nicely in decreasing the frequency she has to be suctioned. The downside is that when her trachea gets cleaned out it is thicker in there as well so we have to use a couple drops of saline to help loosen it up. But this is only a minor thing and the upside is very positive.

I got to spend a couple hours with Brinley yesterday morning before coming home to meet with a rep from the company that will be supplying all of the equipment we will be bringing in for our Bionic baby. She was wide awake and it was wonderful just being able to hold her and talk to her. Usually during these times I'm talking to at least one nurse, PA, doctor, etc. about one thing or another but it's just comforting to hold my daughter while that is going on. And, of course, I had the wonderful privilege of changing a poopy diaper for her.

Sarah got a couple good hours this morning with Brin and had even more to do: she gave her a bath, changed her trach collar, suctioned her, hooked up her feeding, changed a diaper and got her dressed. Really just the normal things you'd do for a baby her age with a couple of extras thrown in. Actually, the feeding part is probably easier now than with a "normal" baby.

And the good news is that Brinley hasn't had any big desats since Thursday when the likely cause was discovered. It's obviously not fixed but is easier to manage and prevent when you know what to look for. Also, she is still on target for coming home Wednesday, June 11th! The 10 count starts tomorrow. Her nurse M has started trying to get her on a good sleeping schedule by getting her all set at night for a nice long rest by making sure she is in a bigger diaper so she won't have to be changed until morning, putting some cream preemptively on so she doesn't get diaper rash and doing all her vitals before she is down for the night. She did great with this last night and only had to be suctioned once, which she slept through.

Meanwhile, on the home front, Alessa had her 2 year birthday yesterday so happy birthday to my adorable strawberry blonde blue-eyed big girl! Today Cailyn got her ears pierced, a big day in every little girl's life. Everyone is healthy which is nice; house preparations continue; we're trying to wrap our heads around how many things there are to keep track of: insurance, doctor visits, who to contact about what, getting and storing supplies, training, setting up babysitting, applying for different programs (I did not realize Brinley would make us eligible for a handicapped license for our car so that's interesting).

So, this post was mostly just factual. I want to do a little video post soon to give a little more personal touch to the story. Sarah and I are doing pretty well emotionally but trying to be better about having good time together, usually late at night at this point. The busyness of everything tends to push this to the back burner unfortunately and it takes real effort not to let that happen. We're still getting better at it so please add this to your prayer list for us. Keeping a strong marriage through this will be so important for our family. We continue to feel so loved by God through everything. Yes, I still get mad at Him when Brinley has a rough day but He responds so gently and I remember God's love for her is so much greater than my own.

We love hearing from everyone about how much they feel like they know Brinley from reading this blog. We are hoping that everyone gets to meet her some day. She's been a blessing to Sarah and I and her sisters and we think it's so awesome how she's been a blessing to all of you as well. Thank you for the continued prayers and support. We love you all!