Day 9: *updated* Lily hanging in there, but Sara just can't catch a break...

Lily had another ok night- but she's stuck on about 40% ventilator oxygen. The docs said her little lungs may just be getting tired on the new ventilator, and adjusting to it. We spent most of the morning at the doctor's office since Sara is having some issues with her incision, called a Saroma. I'll skip the details but suffice it to say it's very painful and unpleasant for Sara.

I hate to see Sara have to pile physical pain on top of the exisiting mental and emotional anguish- she is the strongest woman I've ever known, and I'm incredibly grateful for her. She has an appoitment tomorrow at the "wound center" for another checkup.

We're off to the NICU now for the post-morning-rounds update. I'll post an update with news on Lily later today. Until then, no news is good news!

Update 8:30pm
Lily had another ok day. Docs continue to have a hard time keeping her blood oxygen at a good level on the new ventilator, and lily has been de-stat'ing today, and has been at between 50-60% oxygen on her new ventilator. The swings in her blood oxygen level are very difficult to watch. At one point this afternoon, lily dropped into the mid-50s while Sara and I were there- really a horrible feeling... watching the nurses get gradually more attentive to her screen when it drops.

The docs tell us not to worry about the drops too much, that they're very normal for micro-preemies. It's a complete roller coaster- just when I typed that last paragraph, Lily's blood oxygen went from 93, to 80, back to 93. Then down to the mid 60s- her nurse just suctioned out her mouth, and we're back up to 85 now. Just like the NICU nurse told us: we didn't buy a ticket, but we're on the NICU roller coaster- strap in.

The doctors told us about a small 'air pocket' in Lily's right lung today. It needs to be deflated, because the part of her lung where the air pocket is doesn't actively work at gas exchange. They have been monitoring the pocket for about 5 days- importantly, it has not gotten any larger. The docs think switching over to the jet ventilator (which does more of the in/out breathing work for Lily, rather than just continuous air pressure) may help clear our the air pocket.

So, we were hoping to take another step forward today, to the CPAP nasal ventilator. Instead, we may end up taking a small step back to the jet ventilator, so we can keep Lily's blood oxygen in better ranges.

Nonetheless, 9 days into Lily's battle we remain focused on the POSITIVES! Here are seven of them.

1. Lily continues to gain weight! She is almost two pounds, having gained 30 grams last night. She now weighs 850 grams... a 50 gram increase relative to her birthweight. The weight gain on her is noticeable- her ribcage is no longer visible.

2. Still no signs of brain bleeds - the docs think we are safe enough on brain bleeds to not have to scan for them for another 30 days.

3. For the MOST part, Lily's vitals are still critically stable. Her blood oxygen has been swinging around, but it always returns to range after taking dips. They just lowered her ventilator o2 setting from 50% to 45%. Not the 25% we had the other day, but a move in the right direction nonetheless. It's hard not to pay attention to these little movements--- one just has to hope lily doesn't start de-stat'ing. Her blood oxygen is still at 96% now.

4. Lily's skin color is still improving, she may be able to get off of the bililight in a few days. She has a nice pink look to her, and her skin is much less dark than it was during the first week.

5. Lily's body gas tests- pH, CO2, electrolytes and bicarbonates- are all coming back in range, and aren't swinging around wildly.

6. Lily is digesting well! Her breast milk feeds are up to 2 mL/hr, and she's digesting pretty well at that rate. Her draws only show about an hours' worth of milk, which is acceptable. She had two good poops today. I like poops!

7. If there is an infection, it's being controlled well by the azithromycin IV. Lily is showing no outward signs of sepsis or infection otherwise.

Sara is at home resting, well... maybe not resting, probably wresting our crazy toddler into bed. I'm at the NICU, about to head home. A 'good' first week (ex-day 1) has turned into an 'ok' second week. Lily is doing neither better than, nor worse than, expected. But if average means alive and fighting-- that works for me.

Thank you everyone for the prayers and continued well wishes. The blog has about 6000 views now, just in its first week. Thank you all for reading and sharing Lily's battle- you keep us strong, and the positive energy and prayers sent her way are working miracles!







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