Day 11: Lungs adapting to new ventilator

Lily seems to be adapting to the new jet ventilator. She's stat'ing well at between 35-55% oxygen in her ventilator, so they've been able to wean her down a bit from the 50-60% oxygen required yesterday, the first day on the jet ventilator.

At this morning's visit, the attending physician explained Lily's lung x-rays to us. There were two x-rays- one from yesterday at 9am, just before moving to the jet ventilator. The other X-ray was from yesterday at 9pm, so, 12 hours on the new ventilator.

The first x-ray showed Lily's lungs to be very clouded and opaque- you couldn't see her heart through the lungs, meaning Lily's lungs had suffered a partial collapse. The second image, fortunately, showed that the jet ventilator had re-inflated most of the collapsed lungs, and they were filled with air to the point that they were transcluscent enough to see Lily's heart through. The pneumatocele was the same size in both images, but the dr. said 12 hours was probably too short of a timeframe to see shrinkage in the pneumatocele.

Another problem posed by the pneumatocele, we learned, was that doctors can't administer surfactant, because the surfactant could make the pneumatocele grow. Surfactant is a soapy substance we all generate in our lungs; it keeps our lungs open, keeps them from collapsing when we exhale. Preemies only start making their own surfactant at 30-32 weeks, so this is another issue with Lily's lungs- she needed two rounds of surfactant, fortunately they were administered before the pneumatocele appeared. Lily has another chest x-ray scheduled for tomorrow morning. I believe she's getting another blood gas test later tonight.

Lily received another blood transfusion today. That makes four. It's strange how a medical procedure that once sounded foreign, reserved for the gravely ill, has become a rather nonchalant word around the house. Lily will probably need several more transfusions, if for no other reason than to replace the blood drawn in her daily blood gas tests. She gets about 3cc's worth of blood with each transfusion- three milliliters' worth.

I'm at the NICU now- Sara and I have kind of fallen into a new nicu-life schedule, which seems to be working. We try to both go down during the day once or twice, usually around 10 or 11am. If we can make morning rounds (sometime between 9-11am), we try to. We try to take sandwiches with us so we don't have to buy lunch- at $15-$20 bucks a pop, they were starting to add up. After our midday visit, we go home and pick up Addie from daycare around 3pm - my mom or sara's folks (or sister) help us out with Addie on the weekends, so we can visit Lily together. After picking Addie up/coming home from the NICU, we play with her for the afternoon, trying to keep life as normal and structured as possible for her, outside of our NICU visits. I usually throw her around for about an hour in the pool- she really loves that, but my arms get weak after about 20 launches into the sky! We eat dinner at around 6, then I drive back to the NICU at 7:30, arriving at 8. I spend an hour or so here, drive home, and then we start again in the morning. I'm heading back to work on Monday, so we'll have to see how I can make sure I get to the NICU at least once a day. I'm fortunate to have an understanding and supportive employer, so I should be able to leave early a few times a week, so the NICU vists don't need to be so late on those days. For those who don't know me personally, I have about a 1.5 hour door-to-door commute from lower manhattan, and get home around 9-11pm from work or client-related dinners. But I don't care if my NICU visits have to come at midnight- I'm making it here every day, rain or shine.

Lily's blood oxygen is still swinging around- I've been here for an hour, the vent is set at 50%, and I've seen blood oxygen (SpO2) levels from 96% to 70%. Extended episodes of hypoxia (low blood oxygen below 85%) can after development if they last for more than a few minutes. To the extent lily's SpO2 levels drop, they generally rebound quickly- if they don't, her nurse dials up oxygen content by 5%. yesterday was a particularly scary drop, down to the mid 30s, and the docs bumped oxygen from 50 to 70% to bring it back. Episodes like that remind me how much lily has to fight. I hope and pray she survives, and I hope and pray she has a normal life if she does make it.

Anyhow, to close off with the positives that we're focusing on today:
1. Lily gained 60 grams last night! She is now 880 grams, just one ounce short of the two pound mark! Every day she has a weight gain like this, there is visible improvement in her appearance. I'll post pictures as soon as the isn't intubated any more.
2. Lily is tolerating 3mL/hr feedings. This is great! Pack it on lily!
3. Lily's pneumatocele isn't growing, and she seems to be adjusting to the new ventilator, even though her SpO2 levels are still volatile.
4. This news was yesterday but it's worth repeating- no brain bleeds in three scans!
5. Sara's wound is healing well, and it looks like I'll only have to put my doctor's hat on a couple times a week, when the visiting nurse can't come.

Sara and I remain positive, filled with hope, and confident that both Lily and we will make it through this experience- and we will emerge stronger people for it.

Thank you everyone for your support and well wishes. We're hanging in there, and Lily's still holding the line.