Wednesday, August 27, 2014

Cait Update

So a few people have been asking me about how Cait is doing. And I haven't really had it in me to answer properly. Although her infections are a thing of the past (it's been almost a year infection free), there are still some pretty serious things going on with her kidneys. But mostly we're still in the waiting stage, meaning we will find out more as she grows and progresses. 

We took Cait in for some pretty cool testing a few months ago...back in June (cool as in she was literally radioactive because they injected her with crazy stuff). We had a pretty in depth look at her kidneys. What we found wasn't all that exciting. It actually took me a few days to fully process what exactly it was we are no dealing with. Part of that has to do with the fact that I was pregnant (first trimester) and really sick. But most of it was denial. I had fully expected to go into that last appointment and have her nephrologist say "everything looks great!! We are discharging you from our care and you can go live a happy, healthy, normal life!" But that wasn't what we heard. Instead it was a lot of sighing, asking of a million seemingly unrelated questions with a final "Well, unfortunately Cait will be a patient here for many many years to come."
 Enter my heart breaking.  

So what exactly is it we're looking at? We're not sure. We know that her one kidney is in the 6th percentile and the other in the 34th percentile. Neither one is no where near where a healthy kidney should be. Neither one is really doing what it should. The doctor suspects the one in the 6th percentile was a birth defect. Something that developed in utero. The other one, well we're not all that sure why it's so small and crappy. 
What we do know is that this is either Renal Hypoplasia or Renal Hypodysplasia. Hypoplasia is basically small kidneys with normal architecture. Hypodysplasia is small kidneys AND the presence of malformed renal tissue.

Renal Hypoplasia on it's own is actually quite's usually associated with some sort of syndrome. Which is what led to all those seemingly unrelated questions. 
So he asked about her development, which is relatively normal. She was right on if not early for all her physical milestones. She does have an interesting walk and run and I have had concerns about her hips. She is a late talker, but not abnormally. In fact pretty much right on track or ahead for a baby who spent 18 months in pain, sick and with multiple surgeries. 
We talked about her droopy eyelid. Which actually is supposedly better (but not at all really). But the beauty of that little defect is that she has already been in to see an ophthalmologist and we've already had an in depth look at her eyes and everything there checks out. There is a rare kidney syndrome that also has optic nerve problems. As far as we know her optic nerve looks ok. 

We talked about her weight gain and how she'd dropping off her curve. She's still well within healthy limits, but has significantly dropped off her own curve. However, so has Hailey and Paige. Ben and I are not big people, so at some point our big chunky babies will turn into skinny little kids. So this might be normal. 

We talked about her temperament and discussed her personality. Firecracker!!!
We talked about everything. And what we concluded is that we need more time. He kidneys are functioning ok right now. Our bodies are pretty miraculous. There's a very good chance that the one mediocre kidney might make a come back. The other one is pretty much toast. But she only needs one kidney. So if that one can catch up and pick up the slack, then she can live a very normal life. 

In January, we'll go back and reevaluate. If things haven't changed then we'll have to look even more closely at her kidneys and worry about her future. Which ultimately could be kidney failure, Kidney transplant etc. All of which will probably be ok. But scary and not at all what I had dreamed for her. But we're not there yet. We're still just waiting and hoping and praying.

So, although there are moms out there dealing with much worse, this one is pretty tough for me. When it comes to vital organs and your baby, well that sucks. When you know that you only need one good kidney to live and you see that both are lacking. Well that's pretty scary. When you hear that she might have some rare medical syndrome related to this kidney condition, it sure gets you thinking. It makes you look at every single little thing your child does and wonder if it's normal. Like the shape of her head. The way she runs. Even her personality. Are these all normal? What I've figured out is that she's exactly who she should be. She's all sorts of sweet and spunky mixed together. She lights up everyone's day and sometimes drives us crazy. She's relatively healthy and she probably will always be. We can't worry about what might be, but we can certainly hope and pray for the best for her! And that's what we're doing. 


Laura said...

I love her little personality. Thanks for the update. Hang in there! You have overcome some amazing things and you are always so strong!

The McGales said...

Now that I have a baby it' gives a while new perspective to the challenges others have & I love how strong you guys are. Lots of prayers things turn out ok or that the future is bright for our fun spunky little Cait! She'll be strong like her mom and dad.

Kierra of The Irvine Home said...

I'm right there with you Meagan! It's not easy having a sick baby, and I can TOTALLY relate with the wondering of what is normal and what is a characteristic of their disorder. We don't have any other kids to compare her too, and I hate when the future is filled with so many unkowns.
Praying for that mediocore kidney!
<3 Kierra

Anonymous said...

Our sweet, cute, spunky Cait!
Always in our prayers.

Love, G-Ma and G-Pa