Friday Evening - A Josiah Update

Yeah. Friday. Not Saturday. Sleep deprived? Probably.

Soooooooooooooo, Josiah is doing pretty good! I mean, we would rather have him breathing on his own than depending on a respirator, but other than that the man is doing fantastic! Marie was able to hold him for a bunch this morning and I just had him for an hour this evening. Yeah, I still got a lot to learn about holding newborns. The respiratory and other wires just ups the difficulty and gets me all nervous!

The hormone doctors came through today to have a visual inspection of Josiah. Shelaigh (one of the people who originally flew Josiah from MSA to Children's) dropped by today and told us that she's been doing some reading into Josiah's condition. She noted that no one has yet tested his hormones - ie, growth hormones, cortezone (?) - and that absent or abnormal amounts of the right hormones can lead to Sudden Infant Death. And then she went and made sure our guy got checked out - we really appreciate her proactive-ness! The doctors aren't too concerned because Josiah doesn't have the tumor-like growth in his brain (which often then affect hormone levels) but they did a physical today and next week (when the steroids from his time in the OR have worn off completely) they will test his blood. If for some reason Josiah's hormones are a little lower than optimal, it is something that they can easily suppliment.

And the doctors have let us know that they have decided to keep Josiah on the respirator for a full 2 weeks before they attempt to extubate him again (let him catch up to his gestational age). So let's pray that Josiah develops and grows really well over the next couple of weeks so that he can finally breathe on his own! If Josiah is unable to breathe on his own in 2 weeks, the doctors will probably recommend that Josiah receive a 'trache' (?) - a basically a valve/tube that is surgically put into his throat so that he can breathe on his own power. The good news is that Josiah has good strong lungs so breathing on his own while wearing a trache is totally do-able; further, Josiah will still be able to develop his sucking cordination and everything while wearing a trache and it is possible for him to grow out of his need for the trache and be able to breathe on his own later in life.

So that's the latest! Thanks again for your continued prayers, especially for Marie who wasn't feeling well last night. She's a healthy 100% today which is so good to see.

Thanks to our recent visitors: Pasty B., Rose & Patty E., and Marie's folks who are becoming regulars around the NICU.

Obscure lyric for the day that I was enjoying on the way in: I have eclectic tastes, so good luck figuring out this one (turning to Google is kinda cheating but hey, sometimes we just need resolution no matter what the cost!) By the way, you MUST get to know this artist. Absolutely amazing.

It takes some time to see things through
Sometimes things change, sometimes we're waiting
We need grace either way
Hold on to me
I'll hold on to you
Let's find out the beauty of seeing things through

Trusting & Waiting & Resting.
- Andrew, Marie & Josiah