Meow!

Chloë insisted on wearing this dress to her appointment tonight.

Tonight is Chloë's kidney ultrasound appointment.  For those who don't know or don't remember, when I was 31 weeks pregnant with Chloë doctor's found that she had "enlarged, echogenic (bright)" kidneys on a routine ultrasound.  After the ultrasound, we were taken into a private room with a high-risk doctor and told that this finding usually means the baby is suffering from ARPKD (auto-sommal recessive polycystic kidney disease) and that the outlook was grim.  This disease affects only 1 in 20,000 babies and in order for a child to have it both parents must be carriers of the recessive gene.  The parents would have no known kidney problems themselves (which was true for us).  The doctor said that if our baby was to survive the rest of pregnancy and birth that she would have only a "30% chance of sailing through life just fine and a 70% chance of being on the other end of the spectrum and would probably need a kidney transplant by adolescence".  Needless to say we were both shocked and absolutely devastated to find this out.  I won't go into a long post with boring details, but we spent the remainder of the pregnancy on pins and needles, going to twice-weekly testing to make sure her kidneys were still functioning, etc.  She was born at full term with a team of specialists on hand to resuscitate if needed (extremely poor lung development is a common symptom of babies born with ARPKD) and she came out healthy, screaming, and peed almost immediately (kidneys functioning!).  Before we left the hospital a few days later the doctors did a kidney ultrasound on her and everything looked normal!  All of this baffled the doctors and specialists-- they say they rarely/never see outcomes like this.  Since then we have been followed by a pediatric nephrologist, or kidney specialist, just to make sure the kidneys continue to remain in good shape.  So far, so good.  We had appointments at 1 month, 3 months, 6 months, 1 year and now tonight is the 2 year appointment.  Everything has looked normal and healthy at each appointment.  So, although we have never done the genetic testing to find out 100% what we are dealing with, it is not ARPKD.  If anything, it is more likely the dominant form of the disease, ADPKD, which is an entirely different disease altogether.  It is one where the person may or may not ever have any kidney issues at all in their lives and, if they do, they don't usually manifest themselves until late adult-hood.  Even then the only symptom one may have is high blood pressure or maybe a kidney stone.  Every case is different and the symptoms are what are treated, not the disease as a whole.  So that is that.  We expect that her ultrasound tonight will come out looking fine and healthy as well.

On a side note, my mom suggested that we start talking about the ultrasound and prepping her for it before the big day.  When she went a year ago she screamed bloody murder during the procedure.  Myke and I basically had to hold her down as the (very unfriendly) ultrasound tech squirted the gel on her belly and used mini-ultrasound things (wands?  what are they called?) on her belly and then back to get a look at her kidneys.  It was horrible for all of us.  So this weekend we started talking about how she is going to visit the doctor and how he was going to look at her kidneys.  Myke said, "Want to play ultrasound?!" and he did a pretend kidney ultrasound on her belly.  She got a kick out of it.  We showed her where her kidneys were and over the next couple days randomly would ask her, "Where are your kidneys?!!!" and she would point to her belly.  Myke made it into this big fun game and she was more than excited to head out the door to the doctor's office - they just left 10 minutes ago.  The hilarious part is that we talked about it at dinner before they left and Chloë lifted up her shirt and said "Kitty cats!".  It took us a second but we then realized the entire time we have been saying "kidneys" over the past couple days she has been hearing and repeating back: "kitties".  LOL!!  So she thinks she's going to the doctor so they can see the kitty cats in her belly.  I love it :)