Day 44: Two steps back

Updated a few times today
We received a call from the NICU last night at 3am, they had to take Lily off CPAP and re-intubate her on a tracheal ventilator, because she was having too many apneas and couldn't pull out on her own. Shows how fast things change - she was fine at 10pm. On my way out of the NICU, they gave me a talk - telling me not to be surprised if I came back for tonight's visit and Lily was in the 'next' room for more stable preemies, apparently it's a lot more private and quiet: there are fewer babies, and they aren't all on beeping machines. I didn't even want to write about that, didn't want to jinx it. Hah.

Sara just said something that really hit the nail on the head..."It's like you're on the interstate, driving north, and north is where you want to go. Then someone grabs the wheel, turns it really hard, and all of the sudden you're driving south, back to the cliff."

Yep. That pretty much sums it up. We are staying positive, hoping Lily gets back on SiPAP or CPAP soon, hopefully in a day or so. Hoping and praying she doesn't get any worse.

So, what's happening? Here's the medical part. Between 10pm and midnight, Lily had 7 severe apneas ranging from dips to the 60s all the way to the 10s. Between 12am and 2am, Lilyhad four more severe apnea's (aka desat's). Her blood oxygen dropped down to 18% at one point, the second lowest we've ever heard of it going. She couldn't recover on her own, so they had to intubate her. By why? It could be one of three things:

1) Lily could simply be tiring of the CPAP, tiring of breathing on her own - that's much less worrisome, and is what Lily's nurse thinks is happening because she looks so peaceful, and isn't fighting the vent or trying to pull the tube out.

2) Her stomach was measuring slightly distended, by about 4 centimeters, last night. Docs think it was just gas in her abdomen, caused by the CPAP (continuous air pressure). Gas could have pushed on her lungs a bit, and caused the apneas.

3) The most worrisome cause would be an infection... to test for infection, doctors are doing two rounds of tests, the first of which is complete and came back negative (no spiking white blood cell count, CRP indicator not elevated). The second test, a blood culture, takes 48 hours... so we will have results tomorrow or the day after tomorrow. They put Lily on a low dose of two antibiotics (one main and one 'supportive'), to combat any potential infection. The risks of administering an IV with antibiotics is lower than that of allowing a potential infection to spread).

So, hopefully it's not an infection - looks like it's just tiring, which we are hoping is the case. But we've learned not to get too far ahead of ourselves. The past month of CPAP really got us thinking everything was heading in the right direction - and we hope it still is. After all, it's not like we hit a reset button on the last month. Lily is still almost twice the weight, she's on full feeds, she doesn't have NEC, she's not on the jet or oscillator but rather on the standard ventilator - we just have a lot to be positive about, a lot to be hopeful about, and that's what keeps us going!