Day 24: The times that try our souls

"These are the times that try men's souls."

Thomas Paine was a pretty smart guy. How right he was, and how timeless a quote that is. Indeed, these are the times that try our souls. It's a real test of the human spirit. 

How much can you stretch it before it breaks? I wish I knew the answer.

Lily is having a rough day. She's de-stating all the time, has had more Bradycardia's in the past 24 hours than she's had in the past week (three). They took a lung x-ray this morning to see if it the difficulties she has been having is caused by anything specific- they didn't see anything in particular, other than the acute RDS that's indicated by cloudy-looking lungs. So their next guess is that she might be starting to fail on the SiPAP... basically just getting tired of doing all the breathing on her own. They're going to keep trying SiPAP, monitoring her very closely, to see if she can pull through it. But if she keeps up like this, there is a fair likelihood that she'll have to go back on the tracheal ventilator.

I think it was Mother Teresa who said "He doesn't throw anything at you that you can't handle, but I'm really beginning to wish He stops thinking that I am so strong".

Now, those of you know know me know that I'm not exactly "saintly" - and I'm sure as hell no Mother Teresa. But I see where she was coming from. I just wish this would all stop, because it absolutely sucks. It's all good and well to stay positive- we're trying- but staying positive and hopeful doesn't negate how overwhelmingly horrible of a situation this is. It's so tempting to ask "why" - but we can't go there. No answers, and no upside, in trying to guess why we were chosen to take this journey. 

But we're on it, we're strapped in, and the brakes don't work. 

I'm ending this post with a few positives that we're trying to focus on right now:

1. Lily is still on full feeds,  is still digesting well, and seems to be holding steady above 2 pounds.

2. No signs of infection in the lungs, and no signs of cranial bleeds.

3. She's receiving all of her nutrition from fortified breastmilk

And most importantly - Lily is 28wks gestational age today, and she is STILL ALIVE, and STILL FIGHTING!!!


Thank you all for the support, and for keeping us and Lily in your prayers. Hoping for a better day tomorrow.



UPDATE: Why wait for tomorrow when today is still fixable? I'm at the NICU now (3:30pm) and Lily seems to have fought past whatever was plaguing her this morning and yesterday! She's on 45% oxygen, and is finally stat'ing well without the frequent dips. I'm seeing mostly 95% blood oxygen and above, with only the seldom dip down to the mid 80s, but she pulls herself right back out of it. Lily hasn't had any more bradycardia's since this morning, which is good. Here's hoping we can end the day on a positive note!

Lily is such a fighter. Strongest kid I know!