It's better.

Yesterday (Saturday) was hard. Josh was even a bit riled up. It takes quite a bit for that to happen. It was just demoralizing to see Alicia back on the CPAP yet again. Saturday at 4am she had had two very bad spells where she needed to be "bagged." It's basically CPR with a hand pump and O2. She just needed the extra help of a CPAP. So today they've moved her onto a different machine the doctors call a Fisher Paykel. But the nurses call it an 850, I think. It's a nasal canula that gives cpap, continuous presure that keeps her lungs from closing completely. This way she doesn't have to work quite as hard. She's done great on it for the last 24 hours.

I can't fathom a day when Alicia doesn't need breathing support.

She's 35 weeks gestation now. Saturday was her two month birthday. That was another hard thing about yesterday too. She's two months old and this is where we are.

I've started reading books about other NICU babies and a blog of friends of Jenell Paris. It helps me to realize that Alicia really is doing okay. It's not great, but there are worse paths. Two things strike me as I read.

Children's of Minneapolis really is the best. I read about the treatment of these other babies and know that some things wouldn't have been done that way here. One baby was poked in the heel for blood multiple times a day. Here they would have put in an IV line to draw blood from. Maybe there is some reason they couldn't do that with this particular baby, I don't know. Oh, and some other parents weren't allowed to hold their babies as much as I've been allowed to hold Alicia. We're in good hands.

The other thing that these stories get me thinking about is that Alicia's story doesn't end when she leaves the hospital. And it's something I've been meaning to share with you too. It's easy to think that once Alicia walks is carried out of the hospital she'll be the equivilent of a full term baby. It's so very untrue. Once she's home we'll need to be much more vigilent about not getting sick. She can't come to church. Toby can't go to ECFE. Maybe Toby shouldn't even go to church with Josh. Ugh. Some infections could be lethal. Right now if one of us gets sick, we can stay home from the hospital or wear a mask when we see her. When she's home, we can't get sick. Period. But it's more than that. We won't know for a long time if she'll have cognitive difficulties. Since she's been spared brain bleeds, it might be less likely, but we won't know.

What is looking more likely is that she may have chronic lung disease (the acronym is actually BPD). It's defined as needing extra oxygen at 36 weeks gestation, and it means that there is damage to her lungs. Practically speaking I think we're talking about an apnea monitor, asthma, and meds. It's not as bad as it sounds since the lungs continue to grow new tissue until age eight. Most kids grow out of it, maybe even before she starts school. I shouldn't make this sound too bad, at any rate. Her oyxgen needs right now are low. She still has a lot more apnea than anyone wants to see, but most babies grow out of that after three or four months. She's actually on caffeine right now for her apnea.

The other thing to tell you is that I'm allowed to try to breastfeed Alicia now. With real milk. I tried first on Thursday night. This isn't as exciting as I wish it were because she always stops breathing. If she's awake, she'll suck distractedly for a while. It's the swallowing that gets her. Welcome to the Special Olympics of breastfeeding. She also tends to chomp down more often than actually suck.

This is a very long road.

Thank for still being here with us.


Two of Alicia's grand- parents held her for the first time today.