Sunday, June 26, 2011


First of all, my apologies. I thought I would start blogging again on Monday, when I got access to the network here that allowed me access. Instead I got all caught up in the hospital routine. Most of which involves pumping, cares for Liam, feeding, and playing Oregon Trail on Facebook. It's exhausting. The pumping and all, not the Facebook thing.

Anywho, this has been a very different experience for me than any other time I've had a pre-term baby. Probably because I didn't just have a run-of-the-mill pre-termer. I had a baby with a rare neural tube defect. And, just so we're clear because I haven't typed it out yet today, I still think that blows. Of course, it doesn't blow as hard as other things, so I keep counting my blessings as opposed to railing against the unfairness of it all.

Having a baby at Children's hospital is also whole different ballgame. I see kids who are sick here. I meet moms seeing their babies through heart surgeries, cancer, and a whole host of other illnesses. We've become like prisoners, looking across the table at dinner, asking each other, "Hey, what are you in for?" and commiserating as we hear another mother's fear and hope. I've talked to a mom about a shunt for her baby, since if Liam's fluid in his ventricles doesn't improve, he may need one (ultrasound is tomorrow, and I'll update, I promise). She and I ended up discussing all the wonderful possible side effects of neural tube defects. Her baby has spina bifida so she knows.  She's been playing this game for a few months longer than I have.

I've found that I'm getting kind of surprised by people having healthy babies, and taking them home. That happens? Seriously? But of course I know it does. I've seen it. I've experienced it. It's just not really the norm here. I'm counting the days till I go home and start the waiting game. Is he really okay? How many neurologists will we have to see? Pediatricians? Will I freak out if he catches a cold? I know it was naive, but I really thought I'd stop worrying when he was born and had his surgery. I should have known better. When do you ever stop worrying about your kid?

We're lucky, Liam's a fighter and we have decided that the doctors aren't really going to be able to tell his story. He's got to write it himself. We hope he continues to surprise everyone.

Not everyone is as lucky as we are.  So, if you're the praying kind, keep these families in your prayers tonight. Think of them as you light a candle, or a stick of incense. Send thoughts of healing and peace. Whatever you do. In the grand scheme of things, I know we're taking Liam home, and a lot of other parents are fighting much harder than we are for their kids tonight.


  1. Sweetie, you have such a wonderful positive attitude and I just know with the combination of that and the fight in little liam, that he is going to come home and someday write his story. :) I will pray for you and for all the families going thru the pain of having a sick child. Keep your strength and your wonderful outlook!! (((Hugs)))

  2. lol wait!! I forgot to Oregon Trail on fb fun? I'm such a farmviller but it's starting to get old. lol


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