I am too wide-awake and I doubt I’ll get more than an hour or two even if I do attempt. It was 99 degrees, feeling like 110 outside yesterday. A pool day with the family, for sure, if you could stand the heat. Mom made delicious hamburgers on the grill, Dad made potato salad; a cookout feast. Did you know it was National Ice Cream Day too? By all accounts, it should have been a lazy Sunday. Instead, I was finishing up packing and getting ready for Indiana’s surgery day today.
Earlier this week, I had asked my fellow heart families on Instagram what they would pack for a hospital stay. Blankets, iPads, phones (chargers!), pillows, some loveys for the kids, books, chap stick, deodorant, the typical stuff. I was having déjà vu in fact because just over three months ago I was packing for the hospital for labor and delivery. It’s a little surreal that I am standing in a room full of bags, heading to the hospital and that it has something to do with Indiana again.
You want to know what’s weird? Washing your child with a scrub and soap in their bath, sterilizing their skin with chlorhexidine. For those who don’t know what that is, it’s an antiseptic that cleans the skin before surgery. It’s like in those medical shows you see the surgeon washing at the sink and they’re using those special sponges? That’s exactly what I just cleaned Indiana with. I can’t even tell you guys, her skin was so smooth and it FELT clean, like INSANELY clean. You don’t wash her hair or face with it. You wash under the neck, on her chest, her sides, back and belly without going bellow the belly button for one minute. After the minute, you wash her groin and top of her legs, then rinse and let the water just fall down. Afterwards, you pat her dry with clean towel, dress in clean pajamas and put down for bed.
Ready for surgery.
The rough part here is she cannot drink any formula past midnight, that’s the cut off time. However, to make sure she doesn’t dehydrate, she can drink pedialyte up to 5 am – two hours before surgery. I don’t know how she’s going to do with it; her formula is thick already and I’m afraid she may choke at first. If that happens, I’ll try the syringes and do it that way, like with the Lasix and Zantac. Indiana did not drink too much today… I think she has an idea of what’s going to happen later on. She’s intuitive like that. She did this during the day she had pre-op testing as well.
I’m struck by how relatively calm I feel when just the past two days I was REALLY starting to feel emotional. I was struggling back and forth from being incredibly pissed off to nothing at all. It was like a raging battle inside of my head, my body and neither side wanted to give an inch. I finally relaxed by this morning, probably because I knew this was all going to be over soon. They’d repair her little heart, be in recovery for a little bit and then go home. Start a new chapter with a patched ticker.
At this moment, I truly cannot describe what it’s like being a parent whose child is going into surgery at such a young age. I don’t know if it’s because I’m tired or saturated or what have you. I know I’ll find the words later.
This is going to be a short post because I’m going to need some time just to rest my body. I can close my eyes but I can’t promise myself I’ll drift off to sleep. My head is spinning with thoughts of did we pack everything and how the morning will go. I hope it will go fairly smooth, the transitioning from leaving here to getting admitted at MGH. I hope Quinn will be okay this week, this is going to be tough for her. I hope Indiana will get some peace in her body with the new patch and be able to breath without struggling. I hope Alex knows that I’m here for him to support him once they bring her to pre-op. I’ve always been here for you.
I want to thank everyone, friends and family, for their kind words and thoughts and prayers. I want to thank my mom and dad and brother for being the amazing village that they are in helping us with our kids. We wouldn’t have made it this far without you guys. And I want to thank my fellow heart families. Thank you for taking me in so easily and lovingly, making me comfortable in a world I never thought I’d enter as a parent. I am so grateful for every single one of you.
I’ll keep you updated when I can. Keep an eye on my instagram, I’m more likely to be updating there as it’s quicker than a blog. @chdandme is my handle.
We’ll see you guys on the other side. Stay tuned.
Keep your heart strong.