Baby steps -- the rough plan

We met with the doctors this morning and learned a few things:

• conjugated Bilirubin is down to 13 from 19
  
• we hope to get it down to 1
• his vent settings at the less aggressive settings is making him feel more comfortable, breathing-wise
• he seems to be responding to benedryl
• his feeds are being fortified to give him more calories but without giving him more fluids
• his cultures have come up negative for any other infections so he'll be put back on his original antibiotics
  

We talked to a respiratory therapist today who actually gave an idea of how long his recovery may take, based on her experience. Her estimates:

• 5-6 Days on the Vent, but will depend on how well he responds. Then he'll be exturbated
  
• 5-6 Days on CPAP
• 8ish days on the High Flow Nasal Cannula

So we're looking at ~ 3 weeks in ICU from today. Then we may spend up to 1.5 weeks 'on the floor' at the hospital learning how to eat. He's been learning how to breathe all this time, and being fed through a feeding tube. So we'll have to teach him how to suck, swallow, and breathe all at the same time. This will hopefully lead the way to breastfeeding, but there are no guarantees. This depresses me quite a bit. My relationship with the breast pump is being sealed.

Then depending on how he does with his breathing, he may be able to go home with a low oxygen bottle with a nasal cannula for a month, and also a feeding tube in case he has trouble suckling from a bottle and/or breast.

Baby steps. While this time line is a bit depressing, it's nice to know what reasonable expectations should be from this point forward. We had no idea if this would take days or months, and every step back would devastate us every time. At least this schedule gives us an idea of how to plan our lives a little better.

Matt and I got to hold him again tonight. It was both an exhilarating and terrifying experience. So many tubes and lines to keep track of, and to boot, he's not very comfortable. Every time he cried (and no we don't hear his voice since he has the tube in, but I'm sure it's a very loud and sad voice) we didn't know if he was gassy, had secretions in his lungs that need to be suctioned, or one of his many lines was hurting him from the way we were holding him, or what. It's really upsetting! But we were told that it'll get better and easier, and he'll get more use to being held, and we'll get use to managing all the lines. It's just so hard right now.

I'll end here with a picture of dad holding baby Lucas. G'night.