Day 4: waking up, but still in a nightmare

Lily had another good night - she is such a fighter. She may very well be a superhero (heroine).

Lily lost only 10 grams last night. 50 the first night, 20 the second night, 10 the third night - gives me hope that she will soon turn a corner and we'll see her start to gain. It's frightening seeing such a small baby lose weight- Sara and I notice every gram that she loses.

Lily had another brain scan this morning, so we should get the results back this afternoon. I am praying there are no signs of brain bleeding brain bleeds occur with the highest frequency during the first four days of life. We're on day four now - so while day five is far from out of the woods, it will be good to be in a statistically 'safer' area, although still in critical stage for a while to come.

Her blood acidodity is still a little high, but they were able to lower the pressure and oxygen content of her ventilator. Pressure is at about 20, down from 30. Oxygen is at 35%, down from 40% yesterday- but up from the 30% they tried weaning her down to this morning.

Now that the shock is wearing off, some of the sideeffects of this trauma are beginning to become more palatable. Whenever I'm not with Addie or Lily, I feel very rushed to get wherever I'm going. Waiting in line, any line, seems like an eternity. Traffic is worse. I have to focus on not speeding- Sara will seriously kick my ass if I ding up our new car.

I've also become more acutely aware of my mental state than I ever have been before. Strength and positivity is always at the forefront of my mind; if they begin to slip, I notice it immediately and force myself to snap out of the funk. So far, it's been pretty easy to snap out of them. I've been surprised by that- pleasantly so. I really do believe that Sara and I have the strength to pull through this. After all, we have no other choice.

Life may never be "normal" again - I hope it is, though. Yesterday, I cleaned the pool when I was at home. It was nice to do something 'normal' again. But I also was struck by a guilty feeling- shouldn't I be at the NICU? Shouldn't I be playing with Addie?

I wonder if I'll ever be able to enjoy anything again. Golf, for instance- I love going golfing. I suck at it, but it's still a lot of fun. But how could I possibly enjoy spending a couple hours a golf course with all that's going on? Brewing beer - I also like that. But a batch takes about 6 hours all-in of hands-on brewing, cleaning, bottling, et cetera. That's 6 hours that I could be at the NICU. Do parents of preemies allow themselves to have some aspect of normalcy in their lives? I don't know. I hope so.

I've also been struck by how much this experience has forced me to live in the present. The first few days have been hour by hour- it's starting to turn into day by day. It'll be day by day until we are out of "critical phase", the extent of which is anyone's guess. Seeing Lily's vitals remain in range is tempting- makes me want to think about the day we take her home- her homecoming party (you're all invited). There- I did it again. Thought about her coming home... but I can't do that. It's too far in the future. I need to focus on today. Tomorrow will come, and tomorrow will hand us what it's going to hand us.

Until then, to recap the positives:
Lily's vitals remain in range. She is losing less weight than doctors would expect, and they're working to close her PDA, which should help her retain oxygen. There are no outward signs of infection or brain bleeds, her electrolytes are stable, her blood acidosity is a little high, but it's being controlled by sodium bicarbonate (baking soda...). The doctors seem to have dialed in to what works for Lily. For that, I am thankful.

And in GREAT news, Sara is being discharged today! Just a few more hours left...

We remain filled with hope and positivity; Sara and I are strengthened by your well wishes and prayers. This blog has received about 2,534 views since posting, from the below countries:

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People all over the world are praying for our Lily- thank you all.