"Vacation Day"

We were on the road by 7:05 a.m. Katie has been soooo excited for this trip. She came up with the term "vacation day." She loaded up a ton of stuff to bring for the drive. You can see her listening to music on her tiger headphones. She was listening to an oldies CD and it was fun to hear her singing "c'mon, do the locomotion" and "shout! jump up and shout now!" It was a 4 hour drive and we made one stop of 45 minutes which put us to about 5 hours as we planned. Despite her excitement for the road trip Katie started asking "are we there yet?" after about 1 hour. We had checked out a bunch of new videos from the library but partway there we had some technical difficulty with the video system. Fortunately it started working for the trip back home. We've never taken the girls this far in the car before and I have to say they all did very well.



Natalie's first appointment was the cast removal. While we were waiting for our turn the girls watched another patient get a cast cut off their arm. Katie was a little concerned about the buzz saw but we assured her that it wouldn't hurt Natalie. We took a couple of last shots of the cast. It was fun to have Katie and Annabelle there and to see their excitement for this big occasion.

Do you see how excited she is in this picture!!! (that is a big smile, not crying) She got a little concerned when they first turned on the saw but I kept smiling at her and she realized it was all okay.It was a bit of a process to cut everything away.Off comes the top!Throw it away!!!!!!!!!!! We saved the dowel that was between her two feet but that's it. There was some "blow out" down one of her legs but it wasn't as gross under there as I was expecting. Her skin came through amazingly well. They washed her down a little and after a bath and some lotion at home she was as good as new. I was worried she would have sores or be very dry or chaffed.

Natalie had a couple of tests and appointments that afternoon so I stayed with her at the hospital while Ben took Katie and Annabelle to the zoo. I was glad the cast removal was first because it was fun for the girls to see that.

Here is the amazing urology team that took such good care of us. It felt like a little reunion to see them again.

We left Milwaukee around 5:00, had another 45 minute stop half-way and made it home by 10:00. The girls changed into their PJs during our stop, something Katie thought was hilarious. All three girls fell asleep and when we got home Ben carried them straight to bed. A very long day but everything went well and it was great to be together as a family.

Here's where Natalie stands medically:
* The closure looks great and everything is holding together as it should. The incisions are all healing nicely.
* Her bladder has grown some in the past month which is great news!
* However, the same pressure that is allowing her bladder to grow is also causing reflux back up into the kidneys. Her ultrasound showed that she has fluid in her kidneys that shouldn't normally be there. This is to be expected with bladder exstrophy patients and isn't really a big problem in and of itself. The real concern is if she gets a urinary tract infection because the infection would go right up to the kidneys. She's on antibiotics for now and we are keeping a close eye out for any signs of UTI.
* She has an appointment with the doctor at Uof Iowa in a few weeks to check her kidneys again. We will go back up to Wisconsin in August for another follow up. She will have ongoing appointments to monitor her kidneys and make sure everything is going well but we have finally reached a point of stability.

It's hard to describe our emotions at this point. For the past 3 1/2 months we have been waiting, wondering, hoping, praying, studying, worrying, and riding an emotional roller coaster. We have finally reached this critical milestone (an internal, functioning bladder) and for the first time since Natalie's birth I feel I can relax. You'd think I'd be giddy and bouncing off the walls but I feel very subdued. I feel peace....relief.....gratitude. This might seem strange and I'm not quite sure how to describe it but I also feel a little low. It's been so intense and we've spent so much emotional energy trying to be strong and stay positive and make major decisions. Now that we are in a safe stable place I can finally let it all go. I guess I am just emotionally drained. It's still sinking in that we finally had a successful surgery. I think of it sometimes and I am flooded with relief. I never thought I could become emotional thinking about a bladder.

We are so grateful for all the prayers on Natalie's behalf and the support we have felt from loved ones. We don't know why Natalie has this challenge in her life but we know that our faith has been strengthened and we have been so incredibly blessed that we can feel nothing but gratitude. Despite all the stress and concern, our loving Heavenly Father has been with us every step of the way. I have always had the continuing assurance that our little Natalie is in His care. The best way I know how to describe it is that I picture her cradled in His hands. Many times through all of this I have had to turn the burden over to Him and trust that He would take care of her. And He has. I guess the truth of it is that we are each cradled in His hands. There is no need for despair or fear when we realize how safe we are with Him. Be still, my soul.