i won't sleep, i can't breathe, until you're resting here with me.
before L was born, we had many ultrasounds due to irregularities with the "fun" ultrasound - you know, the ultrasound where the only thing you care about is whether it's a boy or a girl - the one where you start planning a nursery, and names, and yes, you're happy they say he or she is healthy, but really - you're just wishing they'd get around to checking for girl or boy parts.
I knew something was up when the doctor came in the room, a shadowed look on his face. "Come with me," he said and ushered us down the hall to an office marked Genetic Counselor. We heard words like genetic markers, down syndrome, odds, termination, decision. . . Words that before simply conveyed meaning in conversation, but now they pinged in our hearts as reminders that this was not your usual joyful post-ultrasound activity of calling everyone to tell them "It's a. . . " Instead, we were being asked whether we wanted to allow this supposedly flawed fetus to continue to develop.
Turns out our sweet baby girl had some glowing kidneys. No big deal except that meant they likely were full of cysts and would eventually fail to function. In addition to the kidney thing, her liver would also be involved because the bile ducts would form improperly leading to possible portal hypertension and liver failure. I was a mess of a pregnant lady - doing internet research, crying, hugging our seemingly unaffected 2 year old son, wondering how my husband and i could possibly be carriers of this rare genetic mutation causing a recessive disorder. he did not go through the range of emotions, choosing instead to believe the doctors to be wrong.
and she was born. . . healthy, vivacious from the beginning. urinating all over the place, kidneys thriving. we chose to ignore all the prenatal worry and prediagnosis. When the DNA test they performed never came back due to some glitch or blessing, depending on how you look at it, we chose to move forward and put her kidneys in the very deepest back of our minds. Being a mother, I never forgot her kidneys, but I had many days of not thinking of them or the dark days of my pregnancy overshadowed by cautious doctors and monitoring.
our pediatrician supported us in our chosen ignorance - saying that checking her blood pressure each year would be a sufficient way to keep check on whether or not she actually had this dreaded disease. Every year he'd check it, every year it was normal. Until this year. . .
Now we have ARPKD. We cannot deny it any longer. Our sweet L has big ole' cystic kidneys and high blood pressure. There is a 25% chance our other two children also have the disease. We have a lot of testing in our future. We are reeling - I don't know why but I had really convinced myself that she was fine. Her kidneys must have just been glowing because they were nice and clean?
I am thankful that we know her outside of her disease - that we had four years of blissful ignorance - that she developed outside of medical monitoring and intervention. Now we turn down a new road with her. I am so thankful that she is "here with me" now.
