Today I carted the boys to the hospital for their first nephrology (kidney) appointment. They’ve had ultrasounds and things before but we met our nephrologist today and went over what their kidney issues mean, which I am super grateful for because now I understand it. (Even if it was raining BUCKETS and we got soaked paying for parking, geez. 😅)
Long story short: The boys had TTTS. TTTS is shared blood flow and messed up blood shiz between identical twins. Blood is important for organs y’all, especially kidneys. Since I was not able to get a successful laser surgery to separate the twins in utero, when they were born it was like a shock to their systems. Previously sharing blood, circulation, oxygenation and all that to getting suddenly shut off from each other. So the body goes into some shock. Axel, as the donor twin, suffered an acute kidney injury at birth that basically decimated his kidney function. Kidney function is measured by the level of creatinine in the body and his was super high (it should be low). His more recent tests have shown it’s much better now, but still above what is “normal.”
Another factor is just prematurity. The kidneys continue to grow until 36 weeks gestation but if a baby is born before that, then that’s all the kidney you get: they stop growing. (Not really size, but the cell things inside them. The doc explained it better, OK?! lol.) So being born at 27 weeks, and having complex issues in the womb depriving them of proper nutrients/growth/oxygen, means both boys have about 1/4 of the kidney “cells” of a full-term baby. Their bodies will not grow any more cells. That’s it.
Also, did you know being born premature is correlated to higher blood pressures in adult life too? Because of kidneys.
In Axel’s case, because of the acute kidney injury, he also has some other stuff going on like fluid in there and calcium deposits (also common in preemies). So he will be watched more closely than Jaxon as those can be serious problems, but so far it is not concerning as they may go away on their own as he grows.
The boys also had very high blood pressure for most of their NICU stay which is a bad kidney thing. But, at today’s appointment, it measured normal! THAT IS GREAT NEWS.
So what does this mean? Well, adults can live with one kidney! You don’t actually need all the cells you’re born with. So, basically, if the boys treat their bodies nicely in the future by not overdoing it on booze and crap food, their kidneys will be just fine. However, if they were to get diabetes (which we have a strong family history for) or not take care of their health, their kidneys would not fare as well as a “normal” person’s and would enter renal organ failure much sooner.
It also means we’ll continue to see nephrology every 6-12 months until the boys are adults, and that they’ll need to have their blood pressures monitored by a doctor for their whole lives. Probably some creatinine/pee tests sometimes too just for a check-in on kidney function. Basically just some monitoring to make sure their remaining kidney function, especially Axel’s, continues to serve them well!
The appointment went as well as could be expected! It was neat to learn about how kidneys actually work. The doctor even had diagrams and explained it. The geeky science nerd in me liked that. And I’m glad that their blood pressures are normalized now and that everything seems to be going as well as it can for the ol’ kidneys.
The only thing that didn’t go well was AXEL FARTING UP THE WHOLE ROOM THE WHOLE TIME. Ugh. It was FOUL. This child, I swear… I accidentally caught it on video too.
Axel goes for his next kidney ultrasound in May so we’ll know more then. But for now, this worry is getting firmly put on the backburner, at least for now. (Yes, as a special needs parent, I always have “active” worries and “inactive” worries!)
YAY for kidneys!