ROP, MRSA Strikes Back, and Weight Gain

There was a baby boy born prematurely in the 1950s. That baby developed retinopathy of prematurity (ROP) and subsequently went blind.

You've probably heard of this baby - he goes by the name Stevie Wonder.

Samuel's cardiologist told me this story some weeks ago, when we were still grappling with his PDA. It's fascinated me since, particularly understanding that we have the medical advances we have now because of babies like Stevie Wonder. For example, doctors learned that the high levels of oxygen had caused his ROP and blindness - so now, they closely monitor blood oxygen levels and try to keep Sam below a certain percentage.

I bring this up because on Sam's last eye exam, the doctor found some early signs of ROP. He explained that the blood vessels in the eyes normally branch out like a tree. In ROP, the vessels grow a bit scrambled, which is what is happening with Sam. The doctor said it was fairly mild at this point, and would not even discuss future treatment plans with me. He said at this point they'd just monitor it, that Sam could grow out of it.

Sam also has landed himself back in isolation after he tested positive for MRSA again. As mentioned before, it's a colonization not an infection, so it doesn't really hurt him. The isolation is to protect everyone else. He was given a round of antibiotics. The doctor has told me before that they aren't going to aggressively attack it, because it could do more harm than good (we don't want him to develop any further resistance).

On the upside...Sam now weighs 1,034 grams, which is about 2 lbs 4 oz!!! I hollered when the nurse told me that. I'm SO excited that he made it past 1,000 grams.

When he makes it to 1,600 grams, he will be big enough to come out of the isolette.

He's also 32 weeks and 3 days. At 34 weeks, they'll bring in a speech therapist to see if he can coordinate his breathing, sucking, and swallowing. When he can coordinate those motions, he'll be able to start feeding from a bottle (and I can attempt to breastfeed)!

We're in the last two months before his due date, and hopefully the time he comes home. Time has flown by faster than I expected!

As Sam continues to fight, so shall I.

"Why is someone always taking a picture of me? Knock it off already!"

"Please let them take these tubes out of me soon"

"I see you still taking pictures, y'all ain't slick"

"This is MY pacifier. There are a lot of pacifiers in the world, but this one is mine."

Don't Be Afraid to Dance

I'm not afraid to dance.

Because when the breathing tube fell out and Samuel ended up with a pneumothorax and a partially collapsed lung, I cried harder than I've ever cried in my entire life. I was hysterical after getting the call at 1:00 am from the doctor, and a follow up call at 4:00 am. They'd put a tube in his chest to drain the air from outside his lung and completely jacked up his ventilator settings. He was put on a sedative/pain killer to ease the discomfort and keep him from moving too much. His feedings were stopped and he was given IV fluids again. It was a huge step back.

I'm not afraid to dance.

Because when I saw my baby the next day, I was less afraid of the tubes and more amazed at how resolute he still looked. He was sedated, but still kicked the nurse when she tried to change his diaper. He didn't even look fazed by what he'd just been through, as though it was his plan all along.

I'm not afraid to dance.

Because as I fell apart, the people around me rallied to keep me together.

I'm not afraid to dance.

Because yesterday, a mere week after this all happened, Sam was extubated. On purpose.

And he is KILLING IT.

I'm not afraid to dance, because yesterday I saw my baby's full face for the first time. I could feel him breathing, hear the air coming in and out of his nose. I heard his little cry, more of a whimper, but a tiny sound nonetheless.

And then he smiled. A full, dimpled smile. It lasted for just a few seconds, but it was by far the best thing I've ever seen.

When we hit the low points I cry hard. That's why when we have triumphs I dance even harder.

As Sam continues to fight, so shall I.

"I said LESS tubes, not more! Don't touch me, this is not okay."

"Mmm, I'm getting fed again, and no more painkillers! Still recovering from that chest tube."

"This kangaroo wrap really elevated our skin to skin session. Thank you Ace's mom for donating it to us!"

"Don't let this episode distract you from the fact that I'm still planning to take over the world."

"Whoa, hey now!! This cannula is a lot more comfy than that blasted tube."

"Ahhhh, yes. Got my mom, got my pacifier, I can breathe...life is good."