Monday, September 30, 2013

Retinopathy of Prematurity & believing he would live.

A year ago, on September 25, Jonathan was diagnosed with stage two and three Retnopothy of Prematurity (ROP). Suddenly all his care centers around preserving his eyesight. His red blood cells were low. Normally they'd give him more blood. Now they hope he's strong enough to make his own red blood cells because more blood parts means a change in blood pressure. A change in blood pressure might make worse his ROP.  Without the red blood cells, Jonathan looked pale and weak. Since red blood carries oxygen, he required more assistance with his CPAP.  Whereas his pressure and oxygenation needs had been steadily declining, they now began to rise again.

At home Steve and I both battle infections. Mine is so severe that they put me back on an antibiotic that Jonathan can't have, which means I was back to "pumping and dumping" again. On top of this, I'd broken out in stress-induced eczema. I had no idea such a thing existed! It seems unfair, doesn't it? Just as I'd thought I'd gotten my stuff together, we'd made a "new normal" and weren't even accepting food any more -- just as I thought things were getting better, my body decides to tell me differently. Hives covered my legs and arms and torso. Thick, raised hives.  I was put on predinsone to calm it. To me this particular steroid feels a bit like a freight train running through my veins. I was jittery. I was itchy. My body was rebelling. And then, on top of my skin deciding I'd had enough, I got sick. And then on top of that, Steve got whatever I was fighting.

Neither of us could go visit Jonathan. Our "every day he'll see one of us" rule was broken. Thankfully not for more than a day or two, and then I started feeling better, but it was broken nonetheless. We didn't want to chance him getting our bug. Not when he was finally doing okay. I didn't want to see a vent on him again. Never. Never again.

On our caring bridge site I write "In more than one way, we are all investing in the future, even if it means temporary discouragement." On my facebook page I wrote "So tired. Bone tired."

But in a way, it was okay. The retinopathy of prematurity and our illnesses. We were only worried about Jonathan's eyesight. We could tweak the blood parts he received to help preserve his eyes. We were only worried about his eyesight. And, while I missed him, I knew I'd be seeing him again soon. As soon as I kicked the nasty cold. We'd have many more days.

I believed he would live.

At home I started to think about nannies. If he came home, what would we do while I was at work? The daycare we'd planned to use, the one that had saved a spot for him, it was out of the question. Too many germs for a baby like Jonathan. If Jonathan came home...

In a fit of spontaneous optimism, the girls and I set up a baby registry. Not that we had need of one, I wouldn't be having a shower - this was the third child after all, and that's not how things are done - but I thought it'd be nice to put one together, because that's what people do in their third trimester. And here I was, third trimester.

I became frustrated that I couldn't register for a baby who had already been born. I put in his due date, but only one friend could find him by that date. So, in the end, our registry may have been not-so-useful for gift giving, but it was TERRIBLY useful for our sense of hope. I'd be having this baby. Really, truly, having and holding my two month old. He might be six months old or more before I could do it, but I'd be bringing him home. The giraffe prints and cuddly pajamas and mahogany cribs on the floor of the baby store told us so. And at home, he'd teethe. He'd need bottles. He'd need a cozy blanket or cloth carrier. He'd need a high chair, since I'd given away the girls'. Ella and Mimi loved the gun that they could point at things they thought Jonathan would want. (I limited them to two baby toys.) I enjoyed the hope, the chance to finally dream.

He'd be coming home.

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