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. 

Tuesday, August 19, 2014

The Dunes

 Ben has been going to the dunes for a few years now. He loves it there...I'm not so sure. I still get pretty anxious when it comes to him and his boys trips, especially since the avalanche. But over the years I've learned to trust him and his ability. I don't always love his adventure seeking ways, but I do love him and that's a HUGE part of who he is. So I've come to accept it.

This summer, in an attempt to calm my troubled nerves when it comes to the Dunes trips he takes twice a year, he decided to take our family there for a week of Duning. I'll admit that although it was pretty terrifying it was also amazing. The view from the top of the Dune's was stunning. The thrill of riding up and down the dunes was exhilarating. And the time with my family was healing. It was the perfect week. It rained a little bit, we shopped a little, it was super hot for a few days, we played at the lake a few times, we made a slip 'n slide, we went ice caving and we also took a trip to Yellowstone. We packed that week full of fun times...and threw in a LOT of relaxing too. I loved it.

Enjoy the pics: 
Ben on the Maverick - Hailey peeking too

Ben, Hailey, Paige, Cait and had rained earlier in the day so the sand was still kind of wet. Which I liked because I felt like we had more control and weren't slipping around as much. 

Ben and Hailey and Paige

I was on the trip too...that's me under the helmet

One of the Rainy days we headed off to Yellowstone for the day. Kind of a neat experience. Here's Hailey

Ben and Cait...she was not happy about being stuck on the boardwalk. But we weren't about to let her play in the boiling water!

Grandpa and Paige

Some of the pools were so pretty

Watching Old Faithful

Our little family...Old Faithful

Grandpa and the Girls

Off roading on our way to the ice was a bumpy bump ride

I told you the view from the top was gorgeous!

Wednesday, August 13, 2014

Family time

The weekend I had the D&C was busy. On Saturday my Aunt and Uncle came into town...Ben and my girls have never met them, so we couldn't pass up on the opportunity to get together. It was a little bit too much for my body to handle, but still such a fun and gorgeous day. We went out for crepes on 17th, then headed over to Prince's Island Park to feed the ducks etc. Little did we know it was Folk Festival that weekend, which was actually a lot of fun. There was so much going on and it was just the perfect way to take my mind off of things. We ended the afternoon at the wading pool in Eau Claire. It was magic.

Then on Sunday we took a little trip up to the cemetery where we had the twins memorial and where we spread their ashes. We showed the girls their names on the plaque and just took a moment to remember and explain things to the girls. It was such a sweet and peaceful visit. Then we decided to go on a little drive and ended up at the Chain lakes. The girls played at the park, tossed rocks in the water and even got a little wet. It was so refreshing and exactly what I needed that day. I am truly blessed to have the family I do. We were made for each other!

Monday, August 11, 2014

Birthday Season!!

I Love Birthday season around here. It always means summer is here and it especially means that my big girls are growing up and getting bigger!! This year for Paige's Birthday we had a big water/beach party. Unfortunately it was kind of Cold and rainy that day...but that didn't stop the kids from getting their suits on and getting wet! The day was full of sprinklers, water balloons, fishing and pinatas. Just so much fun!

Then a few weeks earlier Hailey turned 7. My parents came and took the older girls for the day and let my pregnant self relax with Cait. It was a great day. They brought Hailey and Paige home with Birthday gifts for Hailey and gifts for the other two girls. We ended the night with a trip to Boston Pizza...Hailey's choice. It was just such a great day!

Then a week later I had a spa party for Hailey. Sarah came and did nails and oatmeal facials with the girls. Note to self...and anyone who cares...5-7 years old don't really like facials. It lasted like 2 minutes until they were all crying and begging to take it off.

Overall, this little string of Birthdays we have in June and July was just what I needed this summer. I love my little family and those perfect girls of mine!