Nothing wrong with a B average

So, if I had to grade Baby E’s heart, I’d give it a B. They were able to fix most of it, but there is a chance she will need more surgeries down the road. They were able to repair one hole, but there is another 2mm hole between the two chambers that they couldn’t get to. A few things could happen: tissue could grow over the hole, fixing the problem; the hole could stay the same size and really not cause trouble worth fixing in open-heart surgery; or, the hole widens in size, and she will need another open-heart surgery in the future. They don’t know what it’ll do – time will tell. Also, the surgeon basically had to form a tunnel to close the hole and connect the aorta to the right ventricle, but he was very conservative in the amount of tissue he cleared to make that tunnel. It’s not as wide as it should be, but it’s wide enough to get the job done. The hope is that not too much scar tissue forms and that it grows in proportion to the rest of her heart. If the surgeon had taken more tissue out, he would have had to insert a pacemaker. He told us he’d take the 1 in 10 chance she’d need a pacemaker in the future over the certainty she’d need one now.

Could she have another open-heart surgery in the future because of either of those two scenarios or both? Yep. We won’t know for a while. She’ll grow and they’ll watch her.

They added a couple more medications to her twice daily cocktail. Hopefully over the next few months, as they keep tabs on how her heart is doing, we can get rid of all the medications. We’re also under what they call “sternum restrictions” for a long while: absolutely no lifting her up under her armpits or lifting her arms above her shoulders. She also can’t do tummy time for another week. We have an appointment with her cardiologist on Monday and we’ll keep seeing him regularly for a while.

When we went home on Tuesday, she actually weighed less than we she was admitted on Thursday. But since Sunday midday, she was taking her bottles well enough so we could go home. She’s not near the amount a typical 4-month-old drinks, but she was gaining weight, and that’s all they cared about. We are still fortifying the milk so she can catch up; the only thing about her that makes it on the growth chart is her big ol’ head. It’s pretty wild to watch her take a bottle now. She used to take a 3 ounce bottle just once in the middle of the night, and all the others were between 1.5-2 ounces. Now, her norm is 2.5-3.5 ounces. And she’s not huffing and puffing! I think over time as she gains weight and gets stronger, she’ll eventually catch up to the intake of a normal baby.

She came out with more than just the incision on her chest. Sweet thing’s got little poke scabs from her two IV’s, and also marks on her neck from where the central line was placed. During surgery, they place tubes next to the heart so blood and fluid drain out into bags. Those two bags were removed on Monday when the drainage finally slowed down to almost nothing. She will have two scars from those a few inches above her belly button. And, the craziest thing to me which I actually didn’t know about until Monday, is that they kept wires internally connected to her heart just in case something goes drastically wrong. Uh, yikes. Here I had no idea that my baby girl had two sets of wires taped to her belly that were internally connected to her heart. Probably good I didn’t know! They keep these in place until they can verify that everything is going well. If it’s not, and if a child has an acute episode, they can connect a pacemaker in seconds. They didn’t remove these until Monday, so we were none the wiser. I think they know what to tell you and what NOT to tell you…

I don’t think I’ll publish photos of the various “accessories” she had because it’s not for the faint of heart, to be honest. I see no reason to blast them all over the internet. But I know some people are just genuinely curious and find it all very interesting. If you’d like to see, I can send them to you. Or, if your own child will be going through open-heart surgery, it might help to see it all ahead of time.

She’s one tough nugget. To know we are in the final stretch feels like a hundred pounds lifted off our shoulders. I can’t even describe what it was like to hand her over for that surgery. I think in many ways we’re still unwinding, though. We are relieved beyond belief it all went well and to be home, but it was still quite the week. The possibility of another surgery doesn’t really freak us out because, well, it’ll be what it’ll be, and it probably wouldn’t happen for years.

So that’s the recap. Your prayers covered her the whole time. We are in awe of our girl. We were told it’d be a 7-10 day stay, and here we are at home 5 days later. Still lots of healing and recovery, but that’s best done at home anyways, where your 2-year-old brother can kiss you on the head and sing you songs and yell from his room when he hears you crying and he’s supposed to be sleeping, “You okay? Baby okay?!”

Yeah, bud. She’s okay.