Another week, another milestone. Another bit closer to the inevitable.
My husband and I have been discussing what we want our birth plan to be if we are given any choices at all. Right now, things are bleak for us to have any say what is done with delivery and the aftermath. I don’t understand how they can think it’s a good idea to just immediately take away my baby from me after birth and never hold it. As much as the doctors sound like they’re on top of bilateral renal agenesis and infant kidney failure and what to do about it, they never cite any success stories.
As it stands, in my amateur Internet research, the only case I can find of a baby without kidneys surviving is Jaime Herrera-Beutler’s baby (http://www.huffingtonpost.com/2013/07/29/jaime-herrera-beutler-baby_n_3671417.html), a Washington State Representative, who underwent a controversial treatment and delivered her baby at just 28 weeks. Our doctors warned us about the story and advised that they do not do this treatment (and even if they did, I would’ve had to have had more fluid when they started to find a pocket to inject into) since when it was studied in the past, the women in the study developed uterine infections. I personally wonder if that’s what happened to Herrera-Beutler, which led to her very early delivery. No one has explained why she had the baby so early.
At any rate, the newspaper articles all cite that this is probably the first case of bilateral renal agenesis that led to a surviving baby.
So if this hasn’t been done before (and never by the doctors I’m seeing?), and the odds are still just about 0 that baby will survive, why can’t we have some say in the matter? Hopefully my controlling specialist will lay off a little to let us have some say in this.
At the moment, baby feels like it’s head-down, which would be a great place for it to be. It’s spent most of my pregnancy mostly head-down (very painful on my pelvis, but I can handle it if it means we can attempt to avoid the C-section), but my specialist was convinced it would shift to transverse and get stuck since that’s typically what happens.
Instead of talking about sad outcomes (even survival involves a lot of hard decisions for us), I wish my husband and I were doing the things people were supposed to be doing with their first child on the way: buying a carseat, stroller, crib, clothing… Just this week I was finally able to look at baby clothes again. It’s still hard to look at them and think about our baby wearing them, but at least I know I am making progress at handling this. I wish I were having a baby shower and I have pangs of jealousy at my friends who are having them now. Having a baby shower means everything is expected to be normal. You would never know we were having a baby by looking at our apartment.
Part of me is afraid what we will do if the baby survives. I suppose it will be hospitalised long enough for us to get the necessary items to take it home, but it will definitely be intimidating.
Right now, we have what we need for an emergency baptism and have a few things for burial, if necessary. We need one outfit for the baby, but we haven’t found one yet. It helps to know better how big the baby will be (earlier on, when the baby could’ve been born at any time, thinking of clothing was way too difficult). It’s still hard to pick one outfit.
Has anyone else noticed how stupid baby clothing can be? There is nothing unisex out there. There are boys’ clothes and there are girls’ clothes. We just want a white outfit that isn’t outright girly (it’s traditional to be buried in a baptismal gown, after all, so something along those lines is fine). So far, we haven’t found anything.
Well we have another week and a half until my next appointment, so we have at least until that long to stock up on the courage to figure out how to tell the doctor what we want with this delivery and try to actually have a discussion on what is plausible.