Wednesday, January 19, 2011

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. 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 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.


  1. Hope is a miracle! She inspires us! And, I love the bath tub pic :)

  2. You know I love your blog and especially the ending ... what parents doesn't take bathtub fun pics ... in this pic it's not showing anything and I know I have tons of pics of me running around naked (I seemed to have been a nudist) when your child is going through something such as CHD you don't care what is going on if it's cute you snap a photo if it's not so cute you snap a photo ...

    I am praying for Hope ... and that her kidney issues will all work out for her better ... Love reading your blogs ... Hope is A MIRACLE!!!!

  3. Ever since I first found your blog when I was still pregnant with Olivia, Hope has been a fighter defying the odds at every corner. Most importantly she more than lives up to her name filling other families and Mommies like me with HOPE.
    Much Love,

  4. We are currently not gaining but not losing, too. It is frustrating!

    Praying her kidneys remain miracles!!

    Mason's mom

  5. UGH- weight gain. SO frustrating with these heart kiddos. I'm sorry to hear about Hope's kidney issues but so happy to hear that she is doing so well. Keeping you all in our prayers always! :) ((hugs))

  6. Sorry to hear about her kidneys - praying with you for that miracle! Glad to hear her heart is staying strong. And I love the bath pics!

  7. Saying prayers for Hope. It is good to hear that despite her kidney issues that she is doing well. Hope the weight game comes.

  8. Hey Paula. Hope is such a little miracle :) she is tiny, beautiful, and sweet and tough as nails at the same time. and she is an inspiration :)
    <3 <3 <3

  9. Praying for Hope's kidney's, another worry to your list (sigh). I know she will continue to thrive and get through this, she is just so amazing. I hope she starts to gain some weight but I guess time will tell. Glad to hear no cardio appointments for 6 months, hooray for that. ((HUGS)) from sunny CA.

  10. TOO cute! I have a ton of pics of my kiddos when they are little in the bath! I say :-p on anyone who doesn't like it!

    YEAH for good heart news! WOOHOO on miracle kidneys! If she needs a new kidney... well, that is a bridge to cross then I guess. Right now, You have some amazing news to celebrate!!!

  11. First.. I love the bath pics.. I have lots of Katherine and Colin the bath together. It's so one day when they are teenagers I can show them that they really do love each other. :)

    I am so sorry to hear about Hope's kidneys. I know she will remain strong and fight against the odds. Her name really does fit her, for there is so much hope in that little girl of yours!

    As for her heart.. YEAH!We go every 6 months, at first it was strange not to go for 6 whole months, but now I LOVE it!

    Weight gain... BOOOO! Something I really hate. Colin has always been slow to gain even though he eats all day long! He just is so active, he really burns them up. Plus I try to make him eat really healthy and hardley ever give junk food. I figure it's better to be small and healthy for him. Hopefully in time they will catch up.

  12. Congrats on the Heart report! That's great news. I remember the first time I heard the words "We'll see you in 6 months". I actually asked again because I didn't think I heard right.

    We also are stuck with weight. Such a frustrating battle. We can't seem to get to 10lbs! But we keep trying!

    Praying for your little Hope's kidneys!

  13. The rest of life seems to be along. Hope that will not support the position, but has not made this first step. I know that she will in her own time.

    appointment setting