Appointment Update...Heart Good - Kidneys Not So Great

You know...isn't it bad enough that my little princess has to have half a heart, but to include kidney issues is just really sad.  Prior to her birth, we were told that she would not have one of her kidneys.  When she was born we were told she had both, but one was very small.  Now, it seems she has kidney dsyplasia in both of her kidneys.  Here is some information I found on this:

In kidney dysplasia, the internal structures of one or both of the baby’s kidneys do not develop normally. Fluid-filled sacs called cysts replace normal kidney tissue. Kidney dysplasia usually happens in only one kidney. A baby with one working kidney can grow normally and has few, if any, health problems. Babies with kidney dysplasia affecting both kidneys generally do not survive pregnancy, and those who do survive need dialysis and kidney transplant very early in life.

So...Hope is a miracle.  Many babies with kidney dysplasia in both of their kidneys do not survive pregnancy.  Hope...even after two open heart surgeries which adversely impact kidney function...has not needed dialysis and is more than alive...she is thriving.  Just another miracle to add to the list.  I know her outlook does not look great...she will probably need a new kidney someday.  We are hoping she will prove everyone wrong and never need a new kidney.

Now...onto the good news.  Her heart function looks good.  Her sats, blood pressure, and echo all looked good.  Her tricuspid valve is not leaking much at all...actually they didn't see any on the echo, but it probably is leaking a little bit.  We don't go back for 6 months!  I can't believe we are free of the cardiologist for 6 whole months.  AMAZING!

Of course...the biggie at both appointments...her weight.  It just doesn't seem to be going anywhere.  She isn't gaining or losing.  She is staying basically the same...almost 16 pounds.  It is frustrating and depressing.  It is the one thing I really thought I had some control over, but I don't.  No matter what I do, she doesn't gain.  UGHGHH...it is driving me insane.  I am still trying any and all ideas, but to no avail.

The rest of life seems to be moving along.  Hope will stand unsupported now, but still hasn't made that first step.  I know she will in her own time.  She babbles all the time and is saying quite a few new words...mommy is her favorite, followed closely by daddy. 

My little ones love to take baths...they could spend the whole day in there.  I don't want to hear about how I shouldn't take these kinds of pictures...my parents took hundreds of pictures of all three of us (me, my sister, and brother) in the bath together...they are cute!

I hope everyone is having a wonderful new year.  I think of my heart family often and you and your little ones are never far from my heart.