Day 18: Beating the odds

Slowly but surely, it feels like we're getting out of the thick of the woods! Lily is still doing well on the SiPAP, and they've been able to wean her down to 35% oxygen on the ventilator, just a bit above room air. They also turned the rate on the SiPAP down from 30 to 20 small bursts of air per minute, because Lily is doing more of the breathing on her own.

She's stat'ing fantastically, and the nurses are saying things like "doing very well", which is music to our ears! I think the doctors notice us getting more optimistic; they give us little "reality chats" every now and then, reminding us that although lily has been on a nice run the past few days, we still have a long way to go. The doctors there are excellent; they'll sit and talk for 30 minutes about different things.

They've increased Lily's feed rate to 4ml/hr today, she's tolerating it well. They increase by one half a milliliter per hour every day- half a milliliter... about one drop. If they're able to get her to 5.0ml/hr by Monday, they might take out the PIC line that feeds her electrolytes/nutrients, because she'll be getting enough from the fortified breastmilk. It's called a 'full feed'.

We learned the main reason they need fortifer: calcium. Lily's bones grow at such a rate that breastmilk doesn't have enough calcium/calories/protein.

We decided not to do the milk fortifier research study. If Lily had a setback - any setback, whether or not it was related to the study - how could we live with ourselves? We hate not to contribute to science, and frankly we felt selfish after telling the docs we weren't going to do it. It would be one thing if Lily was having difficulty gaining weight, but right now everyone is running relatively smoothly- why introduce an unknown? The more I think about it, the crazier I think I was to consider it for a few hours.

In any case, Lily is doing really well! I heard her cry a little bit, for the first time, yesterday. It was a hoarse cry, due to the irritation in her throat from the jet ventilator. Her eyes are opening wider, and she looks alert! We should be able to hold her in a few days... as soon as Addie's cough clears up, and we can be sure we aren't carrying anything.

Here are those pictures I promised a few days ago

Thank you everone for the prayers, and notes of support - they really are working miracles every day!