Thursday, March 10, 2011


I don't even know what to write.

Took Liam back to the hematologist. Brody, Liam and I were at the hospital from 8am - 330 pm. The clot in his aorta is growing. It started at 8.3mm, then went down to 4.3, now it's back up to 5.5mm.

We go back on Lovenox. Two daily injections into my baby's thighs. Him screaming and looking at me while tears stream out from his beautiful eyes.

Also, last time we checked it was $600 or so for a 3 week supply (that's WITH insurance_ and we need to be on it for at least 3 months.

Then we start another round of hospital clinic visits; Monday we go to check the levels of the meds in his blood then back in 2 weeks for an ultrasound to check on the size of the clot then again for levels and ultrasounds and levels.

The hematologist said he believes the clot was caused by the umbilical line. Which was caused by him heing in the NICU on the CPAP machine which was caused by him having fluid on his lungs when he was born which was caused by me having him by c-section which was caused by me.


I didn't cry in the doctor's office when he told me. I waited til we were walking to the car, the 3 of us, in the middle of this gorgeous sunny day. It's always worse to cry on a sunny day.

He doesn't have cancer, right? Plus, it's treatable. If we don't treat it it can become clogged in an artery and then a limb goes cold and Liam loses a leg.

But here's my question. When can I rest easy? Is that never?

And if couples fight about money and they fight under stress and the illness of a child is the most stress on a marriage.....seriously? When is it enough?

When is there peace? When will I stop feeling like I'm hitting my head against the wall? Why can't it be me and not my babies?

I hate feeling like a victim I hate this lack of control I hate this feeling of helplessness.

I hate the calamity and chaos of doctors and hospitals and waiting and wondering and wasn't 14 surgeries for one son enough? Isn't the guilt for that and the teasing he faces and the stares we get all the time and the worry over his long term prognosis and bills and pain and tears from all that is Vacterl Association - isn't that enough?

Why Liam too? Why this family again? Why more hospitals and tears and worry and risk and heartache. Even if it IS less, even if it isn't as serious, even if all of that.



Alina said...

Why, indeed? It certainly isn't fair. :( It isn't at all fair.

Robyn said...

Baby, we will get through this.