I don’t think there is a single person that goes into pregnancy not expecting their life to change. Even if you already have children, you know what you are signing up for. The frequent doctors visits (more in 9 months than I had in the 20 years prior – and that is not hyperbole) the nausea, the acid reflux and/or heart burn, the back pain, the swelling, the needing clothes you would fit into for a nanosecond, the pain of labor, delivery, and healing. Then there’s feeding a newborn every two hours and changing diapers just as frequently. You know you’re going to be sleep deprived. Even if you have an amazing partner that gets up every time you do. Or family. Or friends. Or even paid help. It’s still a lot.
However, I doubt most people go into pregnancy preparing for it to be harder than that.
Yes, some do. Some without any reason to be that worried other than that is how their brain works. And that’s okay. If that is or was you, you’ve got this.
Some, because they know that they are at risk. Or their future child is at risk and those risks are worth the effort for them. If that is or was you, you’ve got this too.
But for the most part, who really prepares for things to go sideways?
I sure as fuck didn’t.
My pregnancy was normal. It sucked. I hated it. Never wanted to do it again, but since I hadn’t been blessed with twins like I wanted and it was normal I figured I’d suck it up and do it again in a few years. You know, after enough time had passed to forget about how uncomfortable I was the entire time.
Then the delivery happened.
I was not the Type-A expecting mother that had a very specific birth plan and would have an aneurysm if it didn’t go exactly as plotted. I’ve seen enough TV shows and read enough books that a plan is well intentioned but is likely to be tossed with the bath water. Any time my doctor asked I responded with something along the lines of whatever gets us both out of this thing alive.
Well, we got out of it alive. Barely.
In the back of my head I imagined sharing Charlie’s (that’s my daughter btw) birth story something akin to Lorelai sharing Rory’s from Gilmore Girls. I’d pop into my daughters room first thing in the morning, cuddle up next to her in bed and regale her with “While some have called it the most meaningful experience of your life, to me it was something more akin to doing the splits on a crate of dynamite…”
And where her story isn’t too far off from my experience during labor – I did swear a lot, but there were no ice chips – delivery and its aftermath were a whole different circus.
After what seemed simultaneously like forever after I got my epidural and only five minutes later, the decision was made to have an ‘urgent c-section’. Of all the things I remember anyone saying it was the use of the word urgent that rankled me. Not an emergency, just urgent. It didn’t sit any better when I found out sometime after I was sliced open that Charlie had been tangled in the umbilical cord and needed to be in NICU for observation. Urgent my ass.
Me on the other hand I lost blood. A lot of blood. As in aside from seeing my spouse cry in my peripheral vision I distinctly remember being told to keep still since I was shaking from cold so much my arms kept falling off the table. One picture was snapped in the operating room, I’m wrapped up in heated blankets (not that you can tell they are heated in the photo, but they were) and my lips are blue, and my husband is holding or precious little daughter right next to my head.
It would be hours before I actually see her, and remember it.
I was in my OB room long enough to see my daughter, be given a demonstration on feeding, burping, and bathing her. Then the real fun began. All that blood loss led to kidney failure. So before moving from the OB to ICU, radiology gave me a visit and inserted a catheter for dialysis.
That hurt like a mother fucker. Honestly, worse than labor – but likely because I was fully lucid for the experience not because it was actually worse. And here is where I shout out to the only male member of the Radiology team. He held my hand during the entire experience. Thank you. That was the best, most comforting thing anyone did for me since going into labor, that was actually effective and appreciated. Everyone else, again, I’m sorry I cursed at you.
I spent ten of the first fourteen days of my daughter’s existing in the hospital. It was lonely. And depressing. And frustrating. And absolutely not what I would have imagined or even anticipated planning for if I had been a planner. I missed so fucking much of my daughter’s first week.
Yes, my husband and my daughter visited me every day (except the two I was in the ICU) but it’s hardly the same when you are hooked up to multiple IVs, and a dialysis machine, and an oximeter, and a blood pressure cuff, and can’t even hold onto her for fear of any of those things getting tangled or dislodged.
When I was finally home, I was so weak from surgery, and being in bed for a week, plus my blood pressure was all wonky from dialysis that I could hardly lift her and walk into another room for weeks. So unless she was placed in my arms I was hardly any help at home for the first month.
I wasn’t resentful of that at all. (Understand that is sarcasm.) At who? The universe? Like seriously, what the fuck did I do to deserve this shitty short end of the stick? My daughter? Fuck no! She didn’t have a choice in any of this. Myself? Maybe, because I wanted to be a mom and it damn near killed me and wasn’t going as I anticipated, even though I really didn’t anticipate much about being a parent figuring I would just go with the flow.
That. That right there, not having a plan or expecting it to be one way or another, is probably why I didn’t break beyond a a few good cries in my hospital bed in the wee hours of the day because I couldn’t sleep. Because I just went with the flow. I needed a transfusion. Sure thing, give me extra blood. I needed all of my plasma replaced. Twice. Why not? Give me the goods. Need a machine to clean my blood because my kidneys are too messed up to do their one job? Hook me up to the filter. Need samples of my blood every three hours so doctors can monitor if any of what they are doing is effective because they honestly had very few ideas as to what was actually wrong with me. Well, it’s not like my blood was being all that useful to me at the moment, and really who doesn’t want be poked with needles so frequently (sigh . . . how ever will I have the courage to get my tattoos touched up now?)
It’s been four months since Charlie was born and my life changed in ways I had no way of knowing to even anticipate. I’m off of dialysis, having been downgraded from stage five kidney disease to stage four, and my nephrologist is very optimistic we can see that down to stage three in the coming months. Then there is the atypical HUS (basically, blood is clotting in my kidneys, and for those of you not it in the know, it shouldn’t do that) I’ve got three more chemo like treatments for that before they take me off the drugs for a bit and see if my blood will behave on its own or if I need to be on treatments for life.
For. Life.
Up until my last appointment I was very much just going with the flow. Mind set that this was a temporary thing that happens sometimes and I would get over it. But I don’t think I can just go with the flow any more. Even if I don’t need the chemo like treatments going forward I have fucking kidney disease. It may be low grade enough that I don’t need to give up four hours two to three days a week so a machine can do their job for them but I will forever be susceptible to that potentially becoming my reality again. I may find that I need a transplant if I don’t actually start planning things.
When I was in the hospital it was easy. They had a special menu just for patients like me. Aside from the pancakes and fresh fruit it was mostly garbage but I didn’t have to cook it, or clean up after it, so it wasn’t so bad. When I got out of the hospital I was pretty vigilant about not exceeding the recommended threshold of sodium. I researched exactly what I could get from local restaurants (mostly fast food because the mom & pop places don’t need to provide nutritional information) but knowing I could still get tacos and it wouldn’t kill me was comforting.
Over my first few weeks with dialysis other nutritional factors were brought into the equation. I needed to avoided phosphates, and since this macro (or is it micro?) nutrient isn’t included on nutrition labels it’s a harder one to avoid, but I was given a list. Out went dark sodas, goodbye Coca-Cola, (though AW Rootbeer was given the okay). Can’t have Doritos any more (this is what tipped off the nutritionist that phosphates were going to be an issue). Pretty much anything with an ingredient ending in –phate needed to be avoided. Phosphates are naturally occurring in meat and produce, but since they are natural versus artificial these are okay since they are easier to digest.
Along with phosphates I also need to keep tabs on my potassium. Bananas and Powerade I knew would need to avoid right off the top of my head, no list needed. I don’t think I’ll ever eat a bowl of rice crispies again, because what’s the point without bananas? It didn’t occur to me that potatoes would be a problem until a few days ago when I was researching cookbooks for renal diets. Fucking potatoes! No more mashed potatoes with thanksgiving. No more french fries with my burgers or hot fudge sundaes. No more baked potato bar at work (that one just came to me and I swear I’m not crying about it as I type). No more roasted potatoes with, well… do I need something to have potatoes with at this point? They go with everything.
Though I’m through the hardest parts of this experience. There’s a small part of me that dies a little thinking about food now. I love food. I may not love all of it (please keep your beans and honeydew away from me) but fuck do I love eating. Chicken and waffles? Yes, please! A banana split? Don’t mind if I do. Sauteed veggies doused in a teriyaki marinade over rice? Yum! But now I have to pause. I have to read labels. I have to know if there’s going to be a family function where I can’t know what goes into everything available or if date night will take us to a place where nutritional details aren’t provided and plan accordingly.
Having a kid has taken the joy out of food, and I wasn’t prepared for that. So medically, I’m doing great. My labs keep coming back with numbers that indicate improvement. Mentally though, I’m trying to find the silver lining in not being able to eat what I want, when I want. A smaller dress size is not good enough for me.
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