2 Days

Our trip to Primary Children's was actually alot of fun! I hate that we're going to Salt Lake because we have a sick baby and have to spend most of our time down there in the hospital, but we really try to make the best of it while we're down there and enjoy ourselves at least a little!
My husband and I decided that he better save his vacation time for something more serious than tests, so he didn't go with me this time! My grandma went instead and I should have known how much fun it would be! We headed out around 9:30 Monday morning and made a straight shot for Salt Lake.. Not even a single stop! That's pretty good for me! LOL.. We made it early enough to spend a little time shopping before we had to head up to the hospital! We hit ShopKo and I am now so close to being finished with Christmas it's not even funny! I've never been done shopping this early and it's kinda a nice feeling! :)
We got to the hospital and NOBODY was in the waiting room at radiology! That's never happened! There's usually a zoo in there! :) We checked in, sat down and just a minute later they were calling BrynLee's name! Another shocker! We went in and missy was asleep so they gave me the whole rundown of what we were going to do and then I woke her up and got her undressed! She loves to be naked, so she was in heaven!
She gave me a little funny look when they put the catheter in, but that was about it! She didn't cry and was very good through the entire process! They got 15ml out and were able to get 55ml in, so her entire capacity (kidneys, ureters and bladder) is 55ml. Really not all that helpful, but still nice to know! :)
The tech was taking pictures and I asked, "Are her ureters supposed to be that big!?" She looked at me and said, "The radiologist will be in soon and she can answer your questions." I knew the answer to my question as soon as she said that! And sure enough the radiologist confirmed, her ureters are severely dialated! Probably about 3 times their normal size! She said grade 3 reflux is dialated ureters and grade 4 reflux is loops, bends and twists in the ureters. BrynLee has one lilttle loop, kinda like a swirl straw, so they rated her between a 3 and a 4. Grade 5 is the worst, but I'm not sure what all a 5 entails! I'm not sure I want to know! Her little bladder looks amazing though! As amazing as a bladder can look I suppose! It's nice and round, and fills and empties right along with the best of bladders! :)
We left the hospital and checked in at the Ronald McDonald House! That place is nothing short of amazing! It's not a 5star hotel, but it's comfortable, like a 2nd home! And that's exactly what it is for us! :) I feel comfortable there and that's more important that room service or a swimming pool!
My cousin Nichelle stopped by for a quick visit! It was so nice to see her! Even with her closer we still don't get to see her as much as we'd like! (hint, hint Shellie!)
Then grandma and I packed up miss BrynLee and headed to have dinner with the Beesley's!
*Those of you that follow BrynLee's facebook page may be familiar with this family, but for those of you that don't I'll introduce you! When we got to Primary Children's there was a VERY sick little boy next to BrynLee.. When I say very sick I mean VERY SICK! I'll never forget the 2nd day we were there. It was the day before BrynLee's surgery and we were able to just sit and hold BrynLee and play with her and love on her all day! At one point during the day Jocko and I were in the room holding BrynLee, talking to her, loving on her and giggling over all the cute little things she was doing! When we got up to leave I turned around and this little boy's mom was standing over her son crying! At that point I still didn't know what was wrong, but I instantly knew it wasn't good! I felt so guilty that we were holding and loving on our baby while she wasn't able to do more than touch her baby's hand. We were laughing and so proud and she was crying and her heart was breaking for her sick baby! I believe it was the next day that we started talking with this family and still to this day we've remained great friends! Those 2 are the only reason I made it through those 3 weeks! They even made a trip up to Malta to come to BrynLee's benefit dinner!
Anyway, we went to dinner at an amazing Brazilian grill! I still can't remember the name of it to save my life, but it was simply to die for! The food was delicious and it was alot of fun! I love catching up with them! I love talking medical with someone that understands it! :) I love seeing their little man and the progress he's made! I just love them period!
The next morning we were up and out by 9.. BrynLee's always up by 6-6:30, so we didn't have the option to sleep in, even if we wanted to! When grandma rolled over she said, "Is it 9 yet!" Nope, but it will be in about 3 hours! :) hehe...
We hit a Mickey D's and headed out shopping again! We had 2 hours and it was alot of fun! BrynLee slept the ENTIRE time! She woke up just before we got to the hospital! Perfect timing! :)
We met with the dr and learned what we pretty much already knew! Her reflux was between a grade 3 and a grade 4 and although they didn't like to do this surgery (reimplant the ureters) until they are over a yr old, BrynLee was probably going to force us to do it sooner! I asked if we could try cathing for a few months before we decide on a surgery! It will at least buy us some time and let BrynLee get bigger! They like to do this surgery between 14-18 months and she's only 5 months! I'd really like her to be bigger..
I really love the team we work with at Primary's.. Dr. Wallis and his nurses are simply amazing! They've always been so helpful with everything, even my stupid questions! :) They let us watch a video on cathing and then helped me cath BrynLee for the first time! It really wasn't as scary as I imagined it! It was very easy, she wasn't uncomfortable, just a little annoyed maybe, and it was over before we knew it!
We headed toward home, made a few stops, and grabbed some lunch on the way! As soon (like the very second!) as I got home we all headed to Declo to watch a nephew wrestle! It was the perfect ending to my day!
I have been somewhat concerned that I'm not getting much urine when cathing BrynLee, but with each cath I get a larger amount, so I'm not sure what that is about, but we'll stick with it for a while, see how she does and pray it helps!
This is the only picture I took while we were in Salt Lake! It was Monday night after her tests and dinner! She was so tired and feeding her right before bed is my absolute favorite time of the day! It's quite, she's content and we're both just very relaxed! :)

It's Still Progress!

The doctor visit in Twin went well yesterday! We started with an xray and BrynLee was already cleaned out, so that was good news! From what we can tell as of now there is no neurological damage or tethering of the spinal cord! More good news! This doesn't rule out that there may be nerve damage to the bladder/colon area, but that will only come with time! BrynLee also got her 2 month shots while w...e were there and only a few months late! Hopefully she continues to feel better and we'll get her caught up in no time!
There was just a tiny bit of bad news.. She has moderate to severe hydronephrosis (swelling of the kidneys), which we already knew, but don't know at this moment if it's still the same, or if it's gotten worse. When Dr. Wallis (her urologist) gets the scans we'll know alot more than we do now! Also, the radiologist found a gallstone! We're really not sure what to do about this right now because it's so uncommon for a small baby to get gallstones, so Dr. Wallis is going to pass this information along to a different surgeon at Primary's and see what they think!
Dr. Wallis also wants to do a procedure where they fill her bladder with a dye and see where the urine goes. It will tell us how bad her vesicoureteral reflux is and see if she ever empties her bladder! Depending on the results we may be going out to Boston a little sooner than expected because if her reflux is severe we'll want to get it fixed as soon as possible! If she's not emptying her bladder we'll have to start cathing her 4 times a day to make sure she's getting empty! This will help minimize infections because she won't have urine sitting in her bladder for days and it will also help with the hydronephrosis because there will be less pressure on her kidneys!
Cathing sure doesn't sound fun, but we will do absolutely anything we have to if it will make BrynLee feel better! ♥
P.S. BrynLee rolled over for the first time yesterday!! :)

Doing Better

BrynLee is feeling so much better! I think she's pooped more in the last 4 days than she has her entire life, but her urologist feels like it's still something we need to look into a little more seriously! Bladder extrophy and intestinal problems go hand in hand, so we need to do more tests to make sure it was just coincidental constipation! We're going to Twin tomorrow for more xrays and possibly... an enema. They are also going to be doing an extensive physical looking for any neurological damage and tethering (whatever that is!). Her urologist would also like to do a study to see when she's urinating and if she ever gets her bladder empty. This could be the main cause of all her infections! If her urine is just sitting in there it will cause an infection, so we may have to start cathing! I don't care what we have to do if it will get BrynLee infection free! She's such a sweet, happy baby and doesn't deserve to be miserable all the time like she is!
On a happier note, BrynLee got BOTH of her bottom teeth in over the weekend! Saturday morning I felt her gums and the left tooth was in but the right one was still covered and Saturday night they were both there! Thank you so much to everyone that suggested the teething necklace! You are all geniuses! Since the minute I put it on she hasn't acted like her teeth have bothered her at all! :) My little munchkin is getting to be a big girl! And waaaayyy too fast!

Update

BrynLee was in the emergency room last night with severe tummy pains. We did xrays and the lower part of her colon is completely full with alot of air in the upper portion of the intestine, which is causing all the pain.. We're working on getting her cleaned out, but the xray also showed that all of her intestines are being pushed over to the left side of her abdomen.. We don't know why.. Took her... to Twin today and had an ultrasound done and although we still don't know what's wrong, we do know 2 things that AREN'T wrong. She doesn't have a mass growing in her belly and her liver isn't enlarged.. Both good news, but that still didn't tell us why! Right now she's doing well, is at home and we'll know more when the results make it to her urologist at Primary Childrens!

~aMaZiNg~

BrynLee's benefit dinner was absolutely amazing! I still can't believe the turnout we had! They estimated that we fed between 525-550 people! Isn't that just crazy!
Thank you all so very much for coming to support BrynLee! This community is so generous and we couldn't live in a better place! Thank you to everyone that donated items for the auction! We had some really great things! Thank you to everyone that put money in the jars! Every little bit helps and we really appreciate it!
I would like to give a very special thank you to all those that were on the committee! Without all of you this would have never happened! Everything was so organized and it all went very smooth! Thank you all so, so much!

We will be taking BrynLee to Boston in April or May of next year!

BENEFIT DINNER TO BE HELD TONIGHT

REMINDER:
BrynLee Hutchison Benefit Dinner/Auction
TONIGHT
 Monday, November 7, 2011
6:00 PM
Raft River High School Gym
All are welcome to attend!
Dinner is $5 per person or $20 per family!

Thank you so much to everyone that has helped us spread the word about BrynLee's benefit! We love all of you so very much! BrynLee is feeling great this morning and will be at the dinner tonight! Come meet this precious baby girl! Can't wait to see you all!

BrynLee had her first news interview yesterday! Check out the video here.

She's Back

My sweet baby is back to herself!
She's smiling. Giggling. Kicking her feet 100 miles an hour!
No fevers for 2 days! And ALMOST slept all night last night!
I wish there was a way we could prevent these infections. Well, that's what her prophylaxis antibiotic is for, but why isn't it working? She's been on 3 different ones, none of which have prevented an infection! I really wish we could get this figured out and keep her infection free for more than 3 weeks!
Any of you BE parents out there, any and all suggestions would be greatly appreciated! I'm getting really frustrated with it! I know it's part of her conditions, she'll have these infections, but does she really have to get one every single month? Like clockwork?
Her little teeth still won't come through.. They're going to be little teasers! Today the left one is way up and the right one has sunk back down some! They are both still there, both very visible, but still under the gum! At least now she doesn't seem bothered by them at all! :)
With that said it makes me wonder if the entire 3 days before we finally took her in it was her infection making her so uncomfortable, not her teeth! She's going to be my little guessing game! Is it teeth, or an infection.. Is it the flu, or another infection..
Fun huh.. I'd rather go to the hospital 100 times and learn it's something like teeth or the flu than to hear she has another infection! I can't wait for the day I rush her to the hospital and the doctor tells me, "Well, it's not her urine, it must be something else!" Right now it feels like I'll never hear those words! :(
For now I'll enjoy her being so happy!
We'll go back to tummy time and work on her getting that wild head under control!
We'll play and giggle together!
We'll splash in the bathtub!
My absolute favorite thing she does is when she's eating! I still hold her for every bottle and sometimes she's not as hungry as she makes me think and she just wants held. I'll put her bottle in her mouth, she'll suck about 3 times, then give me the biggest smile! All the milk will run out of her mouth all over both of us, but I don't care!
That smile..
She's so beautiful!

Today is her daddy's birthday! Happy Birthday Daddy!

In The News

Just wanted to share the article that was in the newspaper! Please feel free to check it out!
Mini Cassia Voice

I also wanted to update on how BrynLee is feeling! She's not quite herself, but I think it's her teeth holding her back! I really hope that by Monday she's feeling better so we can have her at the Benefit Dinner! She has been without a fever for almost 24 hours now and for the most part she's pretty happy! She smiling and even giggling again, so that makes mommy very happy! :)
Thank you all that have shared BrynLee's story with you friends and family! Please keep it up!