Thursday, November 03, 2011

A Little Liam Update

I have to say, being this cute little guy's mom is amazing. It's also a roller coaster of emotions as we seem to resolve some things just in time to worry about new things. The fluid in his brain kept increasing after he came home from the hospital, and a shunt seemed like an inevitability. Then, suddenly, a few weeks ago, it started to resolve, and it looked like he might be out of the woods. Maybe it was just going to take some growth to help stabilize his brain.

Then Dominic and I finally admitted a fear we were having. Liam doesn't look at us. When I say his name, he grins. But if I smile at him...nothing. He can't see me. He doesn't see bright toys, he doesn't track. He does see bright lights, but lighted toys don't interest him. Ophthalmology has decided that he should be seen. But it's non emergent, so it might not be until December or January. In the meantime, I'm trying to provide him with textured toys that he can explore through touch, and lots of sound.

Liam is also having some growth issue. When he was teeny, we were supplementing with fortified breast milk in addition to breastfeeding. It brought him up to the 50th percentile on the growth chart. Then the kids started school, brought home their crud, and Liam got sick, making it hard to nurse due to congestion. He dropped from the 50th percentile, down to the 3rd. My supply dropped, too. It's been six weeks of supplements for him and me, pumping, and doing everything in our power to bring him back up. It's not happening. He's growing and putting on weight, but he's still at the 3rd percentile.

So, our Pediatrician called gastroenterology. See, Liam's been treated for reflux almost since he first came home. That kid spits up like nothing I've ever seen. Gastro seems to think that the pressure in his head is making him spit up too much to be able to really grow and thrive. So, if the fluid doesn't fully resolve, and soon, then he may still need a shunt because it's affecting his ability to eat.

I worry a lot.  Just when I think I can stop, I find something new to worry about. And I still wouldn't trade a single minute of it. I know Liam's here, when other's are not. I can give him a kiss, listen to him coo, and watch him sleep. I don't take that for granted. I can't. I think that's what happens when you know too much. It's the lesson of loss and survival.



  1. Hugs Anne. Sophie was in a simimlar-ish situation with reflux and not growing (obviously not caused by cranial pressure) and it was horribly hard. I think it's one of the worst moments to see your baby struggling to survive.

    My love and thoughts are with you and Dominic and Liam. I hope Gastro will have a solution (one being the NG tube) and that the fluid resolves really, really soon.

    I *know* they say its non-emergent, but I hate that feeling of powerlessness because to the parent, really, it is emergent.

    Thinking of you.

  2. I had this layout on my blog years ago! It's still one of my favorite! I'll keep your little guy in my thoughts, he is beautiful!


I love comments!