How your life can change in just 1 week!!

So a week ago today we were at Lebonheur for Carter's 1 year Urology test. Everything has been going fine as far as Carter's cathing routine, and he has not has had a single UTI in several months. Not since since we haven't had to reuse and wash his caths anymore. So I was really not that worried about going in for his urodynamics and VCUG. I just figured that this was just a "Routine" test that sucks to have to go do, but then we would be done for the next year. BOY WAS I WRONG!!!
First we went to meet Mrs. Judy for his Urodynamics test, which he did really well with. You have to stay completely still during the test and he did a wonderful job at that. So then after that test we went straight to get his VCUG. Have I mentioned that I HATE this test. They have to strap him down on a board with his arms above his head. NOONE should ever have to see your baby this way!! The Radiologist and the same tech were the ones that did his test after birth, which was nice. So right after starting the test the Radiologist looks at me and says "Carter didn't have reflux did he?" And I said "NO" and then she looked at me and said "well he does now!" My Heart SUNK!!! If you don't know anything about Kidney Reflux it is graded from 1-5, with 5 being the worst, and what do think Carter had, but of course Grade 5 VUR (http://en.wikipedia.org/wiki/Vesicoureteral_reflux)!! We couldn't believe it! He has had absolutely NO symptoms!
So after that terrible test we headed straight to Dr. Jerkins office, his Urologist to see him and have an ultrasound. I was terrified to go! When Dr. Jerkins walked in he said that Carter had been doing wonderful and when he saw the report and the images that he thought he was looking at the wrong patients chart. He told us that the cathing that we were doing was not enough to protect his kidneys and that he would have to have surgery! My Heart SUNK AGAIN! I mean are you kidding me, as if this child hasn't been through enough. He told us that the surgery that they usually do to repair this he is too young for, so they will do a temporary fix for maybe around 2-3 years until he is bigger.
The surgery that Carter underwent Thursday morning is called a Vesicostomy. You can read about it here: http://kidneyreflux.info/Vesicostomy.php. Basically the cut a slit around an inch and a half wide in the top of the bladder and pull it up to the skin and turn part of it inside out and sew it to the skin. So anytime his bladder fills with urine it leaks out. This will protect his kidneys, bc before when his bladder would fill the urine would go straight to the kidneys. Dr. Jerkins told us that during surgery he could tell that his bladder was already starting to show some irregularities and show some sign of damage, but it could have been worse and that its a good thing that we caught it when we did. Carter did really well with his surgery. Infact, before Thursday Dr. J told us that we would atleast be staying one night in the hospital, and maybe go home the next day depending on how he is doing. Well we got to go home Thursday night! We were thrilled. It sucks staying in the hospital, esp when Webb and I do all of the care for him, we might as well be in the comfort of our own home! We gave Carter his first dose of Narcotics that he has ever had post surgery on Thursday night. He had baby Lortab, we wanted to make sure that he was comfortable while he slept. He did a great job, but leaked through his diapers and clothes all over his crib.
The biggest challenge for us thus far is figuring out a diaper routine that is going to work for us. Right now we went up a size in diapers to size four, so that there would be a higher rise and we are using a newborn diaper across his incision to soak up the urine at the top of the diaper, if not it comes out the top and will get all over him. Since we went to that technique he has had dry days and nights. The downside of this technique is the cost. We are having to change him just about every waking hour and using two diapers each change. So we ordered some cloth diapers last night and are going to try those out. It may be more expensive up front, but could save a small fortune in the long run. So those should come in this week.
As far as my emotions, I have been holding up pretty well(I guess). But I do have my moments! I go from everything is going to be ok, to pissed, to sad, to frustrated and back to everything is going to be ok! But I just have to keep on going and stay strong for my precious boy. I just get pissed and hurt bc he has been through so much and does not deserve ANY of it(and this is just the beginning). But on one happy note, he has NO idea and is still probably the happiest baby I have ever seen. If you saw him today you would NEVER know that he had surgery less than a week ago. He is crawling and moving all over the place and acts like it doesn't bother him a bit.
I want to thank everyone that has been praying for and thinking of our family during everything we have been through, don't know what we would do without everyone, We LOVE YOU and truley appreciate your Good Thoughts!!
Sorry this post is so long, but on a happier note this week, I ORDERED MY NEW LENS!!!! and it should be arriving tomorrow, right before my Birthday and just in time for Carter's Birthday Party!!! YIPPEE!!
Here are a few pics post surgery in PACU:

Court

HE IS ARMY CRAWLING!!!!

I am just ecstatic!!! My baby boy is army crawling!! It is quite possibly one of the cutest things I have ever seen, he looks like a little navy seal on the floor. I have a video on facebook if anyone is interested in watching. Although he has gotten much faster now. Just being honest with myself here, I do have to say it sometimes(ok well most of the time) it is very hard seeing and hearing what my friends and family's children are doing now, esp. when they are around the same age or younger (but I am just thrilled for them and the things their children are doing). I know people say don't compare your child to others and your child's normal is not the same, but sometimes that doesn't make it any better. There were several months in there that C had hit somewhat of a plateu. He wasn't sitting up, rolling over, crawling, etc. and those months were hard!! But it seems now that he has def. gained some motivation for wanting to explore new things and that has given him the drive to go for it!! He is not sitting up all the way yet(that is and has been my goal for his birthday) but he is doing much better!!
Oh and have I mentioned I have like the HAPPIEST baby EVER!! He smiles and laughs ALL day long. I can not believe that in a short 5 weeks that he will be 1!! It is going to be such a bittersweet moment! WOW how so much has happened in a year! A year ago I has huge pregnant, scared and excited of what our future was going to hold for our son. (The unknown if a very frightening feeling) A year ago I never fathomed I could ever love someone so much it hurts!! I have been planning his first birthday and the theme is puppy dogs :). I figured this was perfect since his LOVES dogs!
Carter is also jabbering up a storm now, he says dadadada all day long and is now copying the noises that you make! It is hilarious and so freaking cute. But of course no MAMA yet :(.
Ok well I better get off here, I hear him waking up talking in his crib.
Oh and BTW these pics are taken in an ADORABLE outfit that Bridge made C!! She is getting really good & I LOVE it! Just had to show off her work, with an cutie model!!
Courtney

Does it have Latex in it?

That is just one of the many questions we ask daily when having a child with Spina Bifida. Last night we went to a Mexican Restaurant to celebrate my brother in Law, Hunter's Birthday. Towards the end of the dinner the waiter brought Carter a balloon. And the first thing that I did was check it all over to see if it had latex in it. Haha, but all the writing was in SPANISH!! But then we found out that it was made of Mylar (Sp?), so we gave it to him, and he LOVED it!! Before having Carter I never realized how many things contain latex! Here is a list of the things that contain Latex from the Spina Bifida Association website (http://www.spinabifidaassociation.org/atf/cf/%7BEED435C8-F1A0-4A16-B4D8-A713BBCD9CE4%7D/LatexList09.pdf).
On another note, I think Carter has caught another dang cold!! We just got over one and and he seems super congested AGAIN!! BOO!! So back to bulb suctioning, which he HATES, using the humidifier, using baby Vicks Rub, Using the Vicks plug in the wall Vaporizer and raising the HOB. Heres to hoping it goes away quick this time!! And I know I need to post Christmas pics and a Christmas post, but I will have to do that later, bc its time to go feed C his breakfast!
Later- Court

Welcome to Holland

LOVE this wonderful example!!!

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland". "Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy" But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned". And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

Spina Bifida updates and PHOTOGRAPHY!!!

So it has been a LONG time since I have updated and last time we were going in for his Spinal MRI. Well what we found out was not very good news. Carter has what is called a Syrinx down the entire length of his Spinal Column. (http://en.wikipedia.org/wiki/Syringomyelia). When his shunt wasn't working his extra spinal fluid builds in to the syrinx and compresses on the nerves in his spine, which can cause like a temporary paralysis. This is why he wasn't moving his legs very much. This is something that will not go away and we have to watch him like a HAWK to make sure and pick up if we do not feel that his shunt is working. But for now his shunt is working, THANK GOODNESS!! We also went to see a new Dr. Dr. Byrd and opthamologist so that she can measure and see if his optic nerve is being affected when his shunt isn't working. This is one of the reason's that Dr. Boop didn't think it was working and sent us for the MRI, bc his left eye was turning in. Well when we went to see Dr. Byrd his shunt was working and she said his Optic nerve looked PERFECT!! We are so thankful for every bit of good news we get. We went back to see Dr. Boop this week and he said everything looked good for now and we don't have to come back for 4 months. This is Def. the longest we have gone, the longest before then was 6 weeks. This makes me very Happy and nervous at the same time! Anyways enough updates on that.
So you ask what have Carter and I been doing Lately, well Photography Sessions of course!! Here are just some that I will include, he is getting so big!
Well Carter is waking up now, I will update with his 9 month stats Later! GTG




Court

Preparing for the next two days....

So the next two days we will learn a lot as far as how Carter's shunt is working. Tomorrow we meet with a Pediatric Opthamologist to see if Carter has a sixth nerve palsy. ( Cranial nerve six supplies the lateral rectus muscle allowing for outward (abduction) eye movement. A sixth nerve palsy, also known as abducens nerve palsy, is a neurological defect resulting from an impaired sixth nerve or the nucleus that controls it. This may result in horizontal double vision (diplopia) with in turning of the eye and decreased lateral movement. ) This can be caused by too much pressure in the brain, if his shunt is not working correctly. At our appt. with Dr. Boop 2 weeks ago he saw that Carter's left eye was turning in and his fontanel buldging.
And on Tuesday morning we will learn the results of the spinal MRI that Carter had done last Thursday. And Based on these two results will determine if he has to have surgery again. We are desparatly hoping that the results are good and surgery will not be necessary, although it seems as though he will need it. These are a couple of pics from the MRI. Poor thing was so tired and hungry. He did not eat bw 8-3!! That is a long time for him he usually eats every three hours during the day! But he did great!


Well yesterday we took our little man to the zoo for the first time. We also bought a zoo membership, so I am sure we will be making many more trips!! Carter did really well, he enjoyed watching the turtles and fish swim he also liked the polar bear and just being outside and people watching. These are a couple of my Fav. pics:
It looks like that Polar bear is starring at C, like he wants him for dinner!! Yikes!
And on a Really exciting note, Carter has been lifting and kicking his legs a lot the last 2 days!!! He has never really done this so we are VERY excited about this!!! Oh and are those not some adorable baby legs!! And I don't know if you can tell in these pics, but his hair is growing at rapid paces!! And it stands up everywhere!! It is sooo cute!!



Courtney