Been too long

It's been too long since my last post- I'm sorry about that, it's been a bit hectic around here.

Evan recovered from the repair wonderfully, although we did have a bit of a scare about a week after because one of the incisions on his scrotum came open.  After a quick visit with his surgeon, he told me that it was perfectly normal for that to happen, and it's not something to worry about. 

Other than that, we've had a fun time trying to get sleep.  Evan has been waking quite frequently during the night (sometimes every hour), and it had me pulling my hair out, bless his little heart.
We've gotten a couple of nights of solid sleep, but it's been difficult.  Mostly, I've just  been sleeping with Evan every night, but it's rarely restful for me, although it helps Evan go back to sleep.  Evan likes his room when he's sleeping, which means I gets kicked, slapped, and pushed as far from him as I can get.  It's a by-product from always sleeping in his crib at the hospital, I suppose.  Either that, or he inherited my childhood sleeping habits.  Who knows?  Maybe that kind of thing is hereditary.  :-)

The two job prospects I was entertaining earlier in the month did not pan out.  Which is fine-  as it turns out, we needed some time before trying to put Evan in daycare.  The adjustment of that after the repair surgery would have been pretty darn tough. 
Luckily, I've got a few more job prospects in the works.  It always takes a few applications and interviews before I get hired.  I hope to have a job in hand and a paycheck coming my way no later than late October.  That gives me roughly two months of searching, applying, interviewing, and all the fun that comes with it. 

Other news:
Because we have not been cleared to return to any therapies, we're focusing on eating.  With no major interruptions in our day, we have been able to work on "speech/ eating therapy" more often throughout the day.  He's showing more progress.  Today, he took in about a half jar of baby food over the course of three sessions from 12-15 minutes.  That amount of food is equal to 40 calories. 
Now, I'm going to do some basic math "out loud", to illustrate the amount of progress we've made, and still have to make, and how much thought and planning goes into something as simple as food. 

Evan's feeds are about 5 ounces every three hours.  Formula has 20 calories per ounce.  So every feeding gives him 100 calories, five times a day, equalling approximately 500 calories.  He also gets his continuous feed at night, which is 19.27 ounces, over 8 hours.  We'll round down to 19 for easy math.  That's 380 calories overnight. 
So Evan's total over the course of 24 hours is 880 calories. 

In order to increase Evan's oral feeding without risking him spitting up because he's overfull, I have to consider how much food he's taken in throughout the day, and decrease an approximate amount from his feeding pump feeds.  We don't want him to associate eating orally with feeling like a stuffed turkey after all!  :-)
This process involves how many milliliters I've given him of actual food, how many calories the food provides, trial and error, and Mommy instincts.  Still, we occasionally have had an Evan that spits up when I look at him cross-eyed. 

A month ago, we were lucky to get 15 calories of baby food into Evan over the course of three days. 
Because we are now taking in a more measurable amount during the day, I am planning on slowly increasing the time spent on feeding sessions and amounts given, as he tolerates it.  Luckily, we've been working on all that FOREVER, so he at least knows the drill.  It's just the huge setbacks after removing the trach, and others before that we've been fighting.  I see nothing but progress in our future.

So here's a short term scenario, completely believable, but not quite as set in stone as a "goal". 

Week of August 26th- continue to take in 40 calories every day over the course of 3-4 feeding sessions, with the goal of increasing calories.  Feeding sessions should increase gradually from the current 15 minutes to 20 minutes by the end of the week. 
Week of September 2nd- Feeding sessions should be 3-4 times a day, 20 minutes at a time, and increase as tolerated.  Try to get at least 60 calories every day, with the goal for increasing amounts taken. 
Week of September 9th- replace a bolus feed with oral feeding of at least 40 cals in one session.  Continue to have 3-4 sessions in a day, and take in 40 calories over the remaining oral feeds throughout the day. 


This is just an example of what I would like to achieve in the short term.  Preferably before we have to change up our routine by putting Evan in daycare.  Ideally, I would like to have him eating almost all his meals orally before we did this, but I feel it's best to expect slight results at the moment.  If he does better, that would be great.  If he does worse, we'll revisit our goals.