Brave with Hydrocephalus

Family Update

2011-10-23T15:02:00.006-05:00

Well not much to report, we are just living and loving and being incredibly happy. So all I can offer right now is gorgeous pictures of my most gorgeous children.

2011-07-13T14:41:00.001-05:00

2011 Golf Fore Carter

2011-07-13T10:54:00.003-05:00

This year our golf tournament will be held on Saturday July 30, 2011 at Oquirrh Hills Golf Course in Tooele, 8 am Shotgun Start. 4 person scramble $50 per player $200 per team. Corporate/Personal hole sponsorships only $50! Funds will be donated to Hydrocephalus Clinic Research Network. For More information or to sign up to play please email us at hydroinutah@gmail.com you can also donate thru paypal on the right hand of the blog.
Hope to see you there, happy golfing!

Introducing Baby Brady

2011-05-04T11:37:00.005-05:00

Happy Birthday Brady Alexander! Born April 5, 2011 at 5:08 pm weighing 8 lbs 7 oz and 21 inches long. This handsome baby entered the world as healthy as can be with no issues at all. What a wonderful experience this baby has been. we didn't have to take his little body into brain surgery at 2 days old, we didn't need to come home with monitors and oxygen after months in the hospital, we knew our prayers were answered for a healthy baby when we looked into those beautiful eyes for the first time. He's been a wonderful addition to our family and to our home.

We were a bit worried about how Carter was going to handle a new baby, sharing attention, crying (sensory integration dysfunction), an altered schedule. But he's done remarkably well, it is bizarre how nice its worked out. Carter doesn't pay much attention to baby Brady besides the occasional kiss on the forehead and playing with the new baby gear around the house. He's been a delight around Brady. So were just hanging out, doing 'normal' baby stuff like eating, sleeping, pooping and starting over, how refreshing! So here is what we've all been waiting for...Beautiful Baby Brady Pictures!

No Baby Yet

2011-03-22T23:07:00.004-05:00

Still pregnant, still just waiting. I have now just hit my 22 month of pregnancy (thats right I said 22 months!) and we are anxiously awaiting this baby boy. Through all the many Ultrasounds, Non-Stress Tests and Genetic Testing, the Doctor says he's just as healthy as can be! He's estimated weighing in at 8 pounds already and is fixing to be a "moose" Doc says. So between popping tums and growing out of the maternity clothes, here we wait. Dr. B says it could be any day!

We are a bit nervous about how Carter's going to handle life when we bring this new little one home. Carter has been center of attention for many years and demands nothing less. So hopefully everyone gets along. He doesn't have a clue whats about to happen to his world.

So cross your fingers and await the big news, because this baby is coming whether we are ready or not! Oh and naming boy #3 has been a challenge, so hopefully he comes with a name tag!

Preschool

2011-01-15T22:26:00.004-06:00

Carter started preschool about a month ago, we chose an early learning center in our community, I was so nervous I just knew he'd have a hard time. Turns out he loves it. He gets to ride the big bus that comes right to our door. It was strange how well he adjusted to school, it just shows how much he needed the stimulation. His teacher has a masters in special ed and early childhood education, she's so good with Carter and all his unique needs. He's even eating snack with the class, most days. I was a nervous mommy and sobbed that whole first day, but now we have both adjusted. Way to go Carter-Bug!

Also, Jordan just got his braces off and looks so handsome! He's now in 8th grade, this fall will head off to high school, gulp. He's so good with his brother, he's such a big help, even when Carter is beating on him.

It's a Boy

2010-11-14T21:43:00.003-06:00

Well we found out that we are having another boy! I guess we only know how to make one kind of baby. This is our 3rd boy. Maybe this one will like to shop! The important thing is that he appears to be healthy. We've had an ultrasound every month since we found out and each suggests his brain structure looks good; no fluid, vents look normal, head size normal, no abnormalities detected (other then that kick stand between the legs, that wasn't suppose to be there). So everything looks good, I guess I'll take all the boys I can make! New family score Boys-3 Girls-1 maybe we should adopt a girl pet.

2010-11-07T19:32:00.006-06:00

TOP HEAD & BRAIN BLOG AWARD

Our little blog created to keep family & friends updated has won an award for being in the "Top 20 Head & Brain Blogs." This blog reaches thousands around the world living with Hydrocephalus and other brain conditions. I have been blessed with the opportunity to share our story which in turn has helped others dealing with their own situations, what an honor. I received this award from nominations and votes from my readers and I would like to thank all of you. Honestly this blog helps me as much as it helps others, its very theriputic to write our experiences and I love that Carter's story has been captured. So again thank you to all who nominated and voted for our little blog, I apprieciate it.

To Conceive to not to Conceive...

2010-09-29T21:56:00.006-05:00

I know a few Hydro Parents we've met since Carter was born. Some stopped having kids after their hydro baby and some had more children. I often looked at the parents who chose to have more and wondered about their emotional journey to that decision. For Eric and I this was a very difficult decision, we always wanted more children, but after going through what we've been through we weren't sure we could or should try again. I'm sure 'typical' families think about the years between their children, their budget, space, whatever. Eric and I worried about a life threatening brain condition happening again. Would it be irresponsible of us to try again with the chance of it happening a second time? Would we be able to handle the pregnancy with "what if's, worries, and the unknown"? What if it happened again? What if something else happened to this baby? We've also met a lot of friends with many other birth defect babies, we are now under the impression that the 'miracle baby' is the healthy developing baby. There's so much that could and does go wrong with a developing baby. This is such a frustrating fact for a mom like me who didn't drink caffeine during pregnancy, took prenatals every day and did everything the books said to do.

We also had Carter tested for the x-linked factor that causes Hydrocephalus, he tested negative. This means that I didn't pass this condition down through genetics. This is an important fact when weighing this decision.

Eric and I discussed, prayed and came up with the decision to try again. It took us about 8 months of trying...brutal brutal trying! :) and finally we have a bun in the oven! We are now 12 weeks pregnant. I have been watched and monitored as a very high risk and our doctors say everything looks good so far. They cant look at the brain structure until about 17 weeks and we are undergoing a bunch of other genetic testing on this baby to make sure nothing else is going on. So its a brutal wait and try not to stress few months. I am super sick like the other 2 pregnancies. I dont know if thats a good sign, I had one extremely healthy and one not so healthy so I dont know how to think yet. We pray each night for the health of our children including the one cooking. So we are only living on a decision based on the faith in our Heavenly Father to bless us with a "healthy, typically developing child". There came a time we had to hand over the stress and worry and just live on faith. We have certainly have handed over control to our faith several times when Carter was clinging to life, and we will continue to have faith with this baby.

2010 Golf Fore Carter

2010-07-16T23:00:00.006-05:00

2010 Golf Fore Carter will be at Oquirrh Hills Golf Course 1255 East Vine Street in Tooele, Utah. Saturday July 31, 2010. This is a 4 person scramble, shotgun start at 8 am. Our teams are almost full, however, there are plenty of holes still in need of corporate sponsorship, only $50 to advertise your company. We are also in need of more raffle prizes. Please email hydroinutah@gmail.com if you are interested in donating, sponsoring, volunteering or playing this year. Golf Fore Carter has been sponsored by a non-profit organization making your contributions and donations tax-deductible. We have a wonderful support system and we appreciate all those who make this event possible including all of you returning golfers.

For more information please see Carter's Golf Blog by clicking here on his logo

Medical Update

2010-06-18T22:57:00.015-05:00

I guess its time for a medical update. Conditions/Problems/Resolutions/blah blah

Hydrocephalus: Carter's pressure is under control and shunt is working nicely for now. His shunt anniversary is January 4, 2008. Its pretty rare for a long shunt life, especially a shunt thats been recalled. But his is doing well. Many shunts fail due to blockage and infection. Bodies are designed to fight off foreign items especially long plastic tubes in the brain. We feel blessed to have such a long shunt life so far. Many of our Hydro buddies have had hundreds of shunt revisions.

Macrocephaly: Well the definition of this is just simply a large head and a few other traits, so needless to say Carter still suffers from this. The only way to fix this is a Neuro Cranial Reconstruction Surgery. At this point, it would be mearly cosmetic with huge risk, so we are passing on this for now.

Cortical Vision Impairment: We just went to our Ophthalmologist who we see every few months. He just declared Carter's CVI totally resolved! Carter's had eye muscle surgery in January 2009 for ocular misalignment which worked beautifully and he now has super straight eyes. They usually veer back but Carter's hasn't so far. He's been patched for about a year. He's also had vision therapy once a week since he was 3 months old. Something must have worked because CVI is now resolved!

Hearing: I just posted this but here goes again. Carter just got tubes placed April 2010 then a few weeks ago he passed a very extensive group of hearing tests with flying colors! NO hearing loss, wheew. Crossed this off the worry list.

Physical Therapy: We are still going to Shriners, but we took a few months off to let development kick in. I am a big fan of letting Carter do most of his learning and exploring in a natural environment instead of a therapy room. We mostly get direction from our therapists and then we practice in a natural environment just like all other children learn these valuable things. Here's our milestones
~1st Smile: 5 weeks
~Rolling over: 6 months
~1st Word: 11 months
~Holding Up Head: 15 months
~Sitting Independently: 16 months
~Pull to Stand: 18 months
~Cruising: 19 months
~Crawling: 20 months
~Walking: 2 yrs 4 months
~Running: 2 yrs 4.5 months :)

Feeding Therapy: Feeding is always our battle, he's eating a bit more then before. All food must be of slight texture and must be dry. He's still staying alive on Ensure bottles. Lots of Cheetos, dry cereal, crackers and on a lucky day he'll try my cooking. Sometimes Eric and Jordan are brave enough to try my cooking as well.

Speech Therapy: Carter is very behind on speech, he said a bunch of words at about 12 months old and one day he quit saying all words. He's back to saying about 4 words now, just since the tubes. We are seeing speech therapy twice a month.

Occupational Therapy: This is still an important part of our week, we try to put Carter in a group setting with other children or in a chaotic setting (such as the Luau) and he has a total meltdown. The sensory part of his brain doesn't know how to filter so chaos over loads his system. We work with our wonderful OT to teach him how to handle this kind of stress. This is a big task for Carter. Needless to say he has a hard time really going anywhere. He's also very schedule oriented. If we throw off his normal schedule he has a hard time recovering.

Beans: He had double Hydrocele Inguinal Hernia surgery in January 2009. All is well in that department, he gets embarrassed if we talk about this too much.

Developmental Delay: He tests on about an 18 month old level in most areas. There are a few areas that he is on target with a two year old but there are a few areas of development that he tests much lower. But for the overall test scores he's real close to 18 months old.

Luau for Carter

2010-06-07T22:34:00.003-05:00

This Friday June 11th the World Class Fireknife Dancers "The Mulivai Brothers" are going to hold an event in Carter's honor. They will have dinner starting at 7:00 pm followed by their famous Fire Dance Show! All proceeds will benefit Carter's Hydrocephalus Fund. It will be held at The Benson Grist Mill here in Stansbury Park. Dinner menu includes: Teriyaki Chicken, Kalua Pork, Dinner Roll and Rice. Adult price is $10 Children price is $5 and families are $35 which includes both dinner and the show. We would love to see our families, friends and neighbors there. No need to RSVP just bring a friend and come out for a great night. Hope to see you there! Questions, email us at hydroinutah@gmail.com

Just another day

2010-06-03T22:05:00.007-05:00

Our hearing battle is over! Carter was put under general anesthesia today and given 2 extensive hearing tests. He was given a sedated BAER and OAE and passed with flying colors. The audiologist said his hearing was in the normal range in both ears. So no hearing aids and no implants, what a blessing! So why couldn't he pass a hearing test? Maybe because he's 2? Maybe because he doesn't like probes in his ears? Maybe because he can't sit still that long? Anyways we may never know. Here he is just waking up.

2010 Carter Shields Open

2010-05-16T23:45:00.002-05:00

Its getting warmer and plans are underway for Carter's 2nd Annual Golf Tournament here in Tooele. It will be held on July 31, 2010. We have chosen Oquirrh Hills Golf Course. If you are interested in playing, donating, sponsoring a hole or donating a raffle item please email us at hydroinutah@gmail.com. We also desperately need all those wonderful volunteers that made last year possible. Proceeds will go to Hydrocephalus research to help families like ours have a better life and someday possibly ending this debilitating condition. Thank you for your support. See you on the course!

Hydrocephalus vs Hearing Loss

2010-05-09T23:47:00.005-05:00

Since birth, Carter hasn't ever been able to pass a hearing test. At 6 days old the hospital gave Carter a hearing test and he failed. They came back with a more intense hearing test which he also failed. The hospital staff said "Carter is deaf, he'll be deaf forever, we're sorry" and left the room. It was heartbreaking, we were prepared for deaf but oh how we weren't prepared to hear those words for real.

So we took home our deaf newborn and we treated him like he was deaf, he really never responded those early days like he could hear. Then our wonderful home health nurse (who has worked with Hydro babies for 20 years) came in and I cried to her about being deaf, she said "he's probably not deaf, every Hydro baby I've ever worked with starts out that way until their pressure is under control" that was hopeful news but we still thought he'd probably be deaf forever.

At about 3 weeks old, I yelled down the stairs to Jordan while Carter was asleep in the next room and he startled awake, we just thought maybe he felt the vibrations. After that he would startle at any loud noise and a few weeks later he was responding to even a quiet voice. We had proof that he WAS NOT DEAF. But to this day Carter can't pass a hearing test.

Carter's been through all the hearing tests: AOE, BEAR, booth, sedated, non-sedated, blah blah and he fails all. So on his medial record says "profound deafness" but Carter can obviously hear. He responds to everyone who speaks to him, he looks to his name, he copies some words, he loves music. He dances to music that I don't talk about, he can hear.

So last week his ENT took him into surgery for Tubes. He said that is the first step to rule out any fluid. (lets face it, fluid is usually the problem). His surgery went well, they scheduled him to stay the night for observation because he usually dies during surgery. But this time it went better then expected. He was on his way home 1 and a half hours after the surgery. Wahoo!

So next step...another hearing test. If he doesn't pass that then he'll have to get hearing aids. If then he doesn't pass then he'll have to get implants. I'm extremely against implants because it destroys any and all natural hearing that he has. The ENT said that he cant hear at all, but I strongly disagree. Everyone who knows him strongly disagrees as well. So stay tuned for the implant battle.

Hydro Mom Tip: As a newborn Carter come out deaf because of the pressure. The more people I talk to, the very common this is. A lot of our little hydro friends have grown out of it or only need hearing aids. I am so glad we didn't get implants like we were advised from our audiologist.

My Amazing Walking Little Man

2010-03-23T00:10:00.004-05:00

Our little man is Walking! Carter has far exceeded the expectations that his doctors have labeled him with. This milestone which is “unreachable” by definition of most. He has defied his odds! The celebration which most take for granted. What a miracle! A child who “would never walk”. This is definitely a renewed hope and strength and maybe, my labeled child just might defy many more odds. So we will continue to dream, love and share. Maybe this may help another, one who has been told to expect nothing to have hope and courage to keep expecting. Carter’s challenges make his triumphs greater and often his weaknesses are accompanied by amazing strengths. Let this be a lesson for me not to take these little things for granted for those little things are the things that matter the most.

Riddle

2010-02-01T22:31:00.003-06:00

What do you get if a 2 year old...with special needs...with life threatening condition just needs a few stitches?

1- Several ER Attendings

2-Anesthesiologist3-Respiratory Therapists4-Several ER Nurses5-A tricky Sedation method6-A few thousand dollar ER bill (not to mention a pissed off 2 year old) I guess if we pray for a 'normal' boy thats what we will get. We decided to skip out on church on Sunday and have a relaxing day, well little Carter fell on the corner of our bed and split his bottom lip open. We knew by the amount of blood and how open his lip was that it could use a couple of stitches but we didn't know how anyone was going to get those in. If you follow baby Carter's story we know that he cannot be sedated or he goes into full respiratory arrest with most of the narcotics and sedatives. So our cute ER attending was beside herself not knowing what to do. She decided to try Ketamine (a sedative that doesn't make you loose consciousness). Well, it was quite the production for just 4 stitches.

2 Years Old!

2010-01-17T19:52:00.015-06:00

Its been a crazy holiday season for us, which explains the lack of updates, so we're playing catch up. Carter is now 2 Years Old, he turned 2 on November 20th. It was such a great day for our family. I'm sure all you Hydro families know what a big milestone a birthday is!

We also had another big milestone, on January 9th we celebrated a shunt anniversary. Our shunt has lasted 2 whole years, not bad for a recalled shunt.

Here are some pictures from our birthday, I'll let Carter narrate...

This might explain why we go to Feeding therapy and why we focus on texture therapy. Smell test
Who doesn't like birthday cake? ME!

I was reminded this was a "fun" day

Ewww, they made me taste birthday cake, yuck!

Grandma learned how to say "more"

I am big drinking from a big boy cup

Overall it was a good day once they took away that birthday cake!

Enjoying the simple things in life

2009-12-21T14:04:00.002-06:00

L1CAM

2009-11-17T11:13:00.003-06:00

We have very exciting news! Carter tested Negative to L1CAM Syndrome! What does that mean? Here's a scientific definition in kindergarten terms: Well, there are ten's of thousands of genes in our bodies. Each gene is connected to one of our many chromosomes. We tested just one of those genes in Carter's body. That was going to tell us if he had L1CAM Syndrome. That is a genetic cause to congenital hydrocephalus. If he did have L1CAM that would mean that I (Mom) had that mutated gene. I would then have the chance to pass it along to 50% of my male children and my female children would have a 50% chance of carrying it and passing it along to her children, because it's attached to the X chromosome. This mutated gene only affects males (giving them hydrocephalus) and the females just carry it. I probably have confused you right?

What does this mean for little Carter?
While its really good news for any future children that the stork may drop off to our home, but it doesn't mean we are any closer to finding out why Carter has Hydro. It ruled out just that one reason, there are hundreds of other causes, or so they think.

HYDRO MOM TIP: If you are interested in more information, we went through the company Gene Dx for our L1CAM test. There isn't much information out there just by searching (atleast that I could understand) but at the bottom of Gene Dx click on "information sheet" for a pretty good explanation.

Fall 2009 School Picture

2009-11-13T11:21:00.004-06:00

My Little Turtle!

2009-11-01T22:31:00.009-06:00

Jordan is a hill-billy and Carter is a Turtle.

Carter's came with a cute little turtle hat but...it didn't fit. :(

Look what Carter was busted doing to the trick or treat candy

Ankle Foot Orthotics

2009-10-11T15:56:00.007-05:00

Back to the fun posts! Just another thank you for all the fundraising efforts of all of our families, friends and community. Your efforts were so wonderful. Our family feels so supported and loved, thank you!

Lets get back to the fun stuff, the day to day stuff. I have tons of info since our last "how we are doing" post. Lets start with DAFO's (Dynamic Ankle Foot Orthoses). Our Physical therapist was concerned with Carter's ankles turning in, here's a pic of before the DAFO's were ordered. She said this sometimes happens to children who don't use their muscles often or have low muscle tone. So in Carter's case he has both those problems. We ordered from Cascade and we love them, well Carter doesn't love them, but they are doing their job. Ug looks painful...

And Here's a pic of Bug in his DAFO's. They're just like little shoes.

And today, just a couple months later, look at the major improvement:

HYDRO MOM TIP: Go to a shoe store and purchase "High Heel traction" for the bottom of the DAFO's. They originally came plastic on the bottom and he slid all over when trying to walk. Payless Shoe store sells high heel traction for just a couple of bucks. Oh and they fit perfectly on the bottom, no need to cut, bonus!

Walk Pics

2009-09-27T21:19:00.009-05:00

Team Carter raised $2,334 for this year's walk! We are also so excited about Dr Walker's announcement that the government just awarded a grant of $1 Million to the Research efforts for Dr McCallister and Dr Walker's new research center here in Salt Lake, what an accomplishment. Dr Walker spoke at our walk about the wonderful research they've come out with and how this money will help them fund their findings for different ways of TREATING and PREVENTING Hydro. What angel's the researchers are, they work for next to nothing with very little funding. They are definitely doing great work for hydro families all over the world. Check out some of our exciting pics from the walk:

We also got a chance to perform a shunt operation on a brain:

2009-09-11T23:35:00.000-05:00

Make an on-line slide show at www.OneTrueMedia.com

TEAM CARTER!

2009-09-05T19:27:00.005-05:00

Join our 3rd Annual Hydrocephalus Walk in Salt Lake City. You are invited to come out and walk with TEAM CARTER on Saturday, September 26, 2009 at 9:30 am at Sugarhouse Park. Last year we came in Second place for the most funds raised and First place for the most walkers who came out to support. You can view our page and register to walk at:
TEAM CARTER'S WEB PAGE
This website is where you would register to walk, make sure you order your free t-shirt when you register.

We have done several fund raisers for this walk and other hydro events so if you'd like to donate that would be great but we know we've tapped a lot of resources lately. Last year we did have several of our friends and family go around to their friends, families and co-workers and collect donations, that would also be great again this year.

Its our family goal to raise awareness about this condition that Carter lives with every day and we are determined to make a difference for him and others who live with this debilitating condition. We hope to see a cure in his lifetime and you can help us reach that goal with our fundraisers throughout the year.

Our web address for the walk page is: http://www.gifttool.com/athon/OurTeamPage?ID=1488&AID=794&TID=4635

Please e-mail us if you need more information or need help registering at hydroinutah@gmail.com

1st Annual Carter Classic Softball Tournament

2009-08-22T16:44:00.008-05:00

Tis the season the Shields family fundraisers. With the success of our golf tournament we are confident we'd like to continue to raise awareness about Hydrocephalus. Our next event is just a few weeks away, we are hosting a softball tournament to help raise funds for Hydro Research. We are so blessed to be in our area with wonderful family, friends and a great community that has always supported us through our tough times. We also are blessed with such a gifted group of Neurosurgeons and Researchers that have dedicated their lives to Hydrocephalus research and I am confident they will make a difference in Carter's life and thousands of others suffering with this condition. So, we are donating half of the Softball funds to the Dr Marion Walker's Research Fund and the other half will go to the Hydrocephalus Association's Annual WALK on Sept 26th.

FIRST ANNUAL CARTER CLASSIC

CO-ED Softball Tournament

Sept 12, 2009

Deseret Peak Complex

Tooele, Utah

Teams should consist of at least 10-12 players (equal guys & gals). We play underhand pitch and you do not need to be pros. We will have raffles, 1st 2nd & 3rd place prizes. For more information or to sign up your team, please contact Brandon Shields at 801-554-4381 or Eric Shields at 801-831-5210 or email us at hydroinutah@gmail.com Your team can be sponsored by a company or just collect $20 dollars from each player.

First Annual Carter Shields Open

2009-08-02T08:39:00.005-05:00

Saturday, our family learned just how important our friends, family and community are to us. We are so blessed to live in such a wonderfully supportive group of people who love us and who truly care about our family. Our golf event was more then we could have expected. People came from far and near, it was remarkable to see people step up and be so generous. Our family is truly changed by the amount of love we feel and the amount of support we've been given. Thank you to all who planned, participated and donated to our family. We are forever in debt to the wonderful people who came out this weekend. Thank you! Check out our GOLF BLOG for more pictures and please go to the links on the right to support the businesses that have supported us.

GOLF FORE CARTER

2009-07-29T08:53:00.002-05:00

Its almost Golf Time!

Saturday August 1st
Shotgun Start at 8:00 am at Stansbury Park Golf Course
Lunch will be about 1:00 pm at the Pavilion (right by the Pro Shop)
Raffle about 2:00 pm

Everyone is invited out to the lunch and raffle

We have had a great response from the community, thank you to everyone who's participated so far! See you on Saturday!

15 Minutes of Fame!

2009-07-16T04:39:00.003-05:00

Video Courtesy of KSL.com

Check it Out!

2009-06-26T00:25:00.002-05:00

Breaking News!

2009-06-23T22:30:00.003-05:00

This might not be a big deal in the average home but our home its huge! I heard Bug wake this morning and I could hear some wrestling around. It took me a couple of moments before I entered his room and to my surprise this is what I saw...
Carter was standing up in his crib! He was fully standing but by the time I screamed in delight and grabbed the camera he was back down to his knees. Bug usually cannot get out of laying position. Our physical therapist said that 'laying to sitting' will be one of the hardest transition to master (because of the weight of that heavy head). He was standing up in his crib! That's amazing for us. I know, I know, most kids do this by just a few months old, but its a major accomplishment for us. So we spent the night lowering his crib to where he can't fall out. What a blessing this baby is. Another milestone "they" never expected him to reach is now checked off! He'll show the world he rocks.

Prayer Request

2009-06-16T23:30:00.003-05:00

Our little hydro buddy is in the ICU hanging on after full cranium reconstruction. We just love this little guy. We met through our local Hydro parents support groups. I have picked their brains for all of the little tricks that the doctors and therapists don't know about (other parents are my best resource). Baby Cole is a little older then my Carter and has been through everything just ahead of us, so when there's something we can't figure out we know either Cole or little John Paul will have the sure answer and solution we need. He has suffered some complications from the surgery and we wish for a good recovery. He has wonderful parents who love him very much. They have great faith that is carrying them through this hard time. We have been praying endlessly for our special Cole, please do the same. I am praying for Cole's good and timely recovery, for his parents to stay strong, eat at least one meal a day even if it is hospital food, to get some sleep on the ICU waiting room couches or the occasional doze in the rocker glider next to Cole's bed, to stay strong and to grow with each of these trials they've been given. Please pray for this family, they are truly remarkable people.

Here is Cole's site: http://onebighappyfamilyinutah.blogspot.com/

Dream Night at the Zoo

2009-06-07T16:48:00.003-05:00

Our local zoo hosts a special event called "Dream Night," its for special needs kids from our local children's hospitals. They open the zoo only for these special kids and their families, feed us dinner and have a little performance from a special needs band then we can see all the animals. Carter didn't see any animals though, he was more interested in the glass, fence or bush that housed the animals. The rest of us like seeing the animals. Maybe next year.

Good Times

2009-05-03T16:09:00.012-05:00

Sorry to leave the blog on such a sour subject for so long. We have good stuff to report. Everyone is healthy, happy and thriving.

First of all, oh what a cute baby that is up there! That smile was just before a major melt down, he he.

At the first of 2009 we were accepted to Shriners hospital, what a blessing that was, it is such a wonderful organization. We had a physical therapy assessment (so that was just 3 or 4 months ago) and the PT said that she thought Carter would definitely walk, she estimated he'd walk by kindergarten, but she set our goals for being upright sometimes throughout the day and scheduled us a wheelchair fitting.

Well I am pleased to report just a few months after that assessment he is almost walking. He is now pulling up to standing and "cruising" furniture. His PT thinks he'll definitely be independently walking by 2 years old. What an accomplishment for our little dude.

He's also eating a bit better then before. We started a high Calorie diet with his feeding therapist, with a bunch of high calorie ensure shakes and we are happy to report he's now got a bit of chunk on those skinny little thighs.

Speech & Feeding therapy is on hold for a few months. She thinks he's doing super in both areas so we can clear some days off the schedule for...well...I dont know what we will do with a morning or two off. We still have vision, PT and OT each week, 2 therapies down 3 to go!

Vision is right on target for his age.

PT, well we're catching up, that's a heavy head to master.

OT, well I think we'll be in OT for a bit longer but our window to the world is opening and what do you know, I think we're fine with that big world out there.

Shunt Recalled

2009-03-30T21:49:00.003-05:00

Here is the letter we received in the mail:

Dear Parent:
As we are sure you know, ventriculoperitoneal shunt devices can malfunction, and if they do, surgery is often required to repair them. Unfortunately, this is more common than any of us would like.
Recently we have seen seven instances where the shunt tube in the brain (ventricular catheter) has become disconnected from the rest of the shunt. We have only seen this with the BioGlide catheter.
The manufacturer of BioGlide, Medtronic, has recently issued a voluntary recall of all BioGlide ventricular catheters. This means that BioGlide catheters will no longer be used, and the hospital supply of BioGlide catheters will be sent back to Medtronic. The company is not recommending any action in situations where the BioGlide catheter is currently in use by a patient.

Your child has a BioGlide catheter in place, the neurosurgeons and staff feel that you should be aware of this issue, but they feel that the risk of a problem because of this new issue appears very low. The neurosurgeons are not recommending that these ventricular catheters be removed or changed. If you have concerns, however, the hospital staff would be happy to arrange for a CT scan to check the shunt and the ventricles, without a cost to you.

Isn't this nice, as if we don't have enough to worry about. How does a shunt get recalled, especially the one that is lodged in my baby's brain? I wish I may I wish I might, wish that there will be an alternative to our shunt someday!

Big Boy!

2009-03-23T11:45:00.004-05:00

Look at what a big boy we are! He just took a giant leap in development, where everything is just working right with his vision, physical, sensory, really everything (yes even eating). He is now sitting independently. We put him in a sit up high chair at a restaurant for the first time, in a shopping cart at the grocery store, and a big sitter in the bath tub, what a big boy! He loves being vertical in the world, how much easier it is to take him places. Positioning has always been a hurdle for us, I imagine it will be for a while. He has been able to sit supported for a while now but had to rest his head after a couple of minutes. So this is a big deal to our world and a big milestone in the Hydro community. Go Bug!

Upper GI

2009-03-15T15:10:00.003-05:00

We went to the GI (tummy) doctor because of our frequent vomiting. Bug vomits every day, most days its several times a day. He eats, he gags, he chokes, he vomits. Projectile vomit is just part of our lives everyday. We started feeding therapy about 6 months ago, she works on eating, food volume, gag reflex, textures, desensitizing, blah (all without success). I think it's probably the biggest trial we have right now. So we were referred to the tummy doctor by all our therapists and doctors, they were just sure that we have something wrong with the structure or the mechanics of our tummy. So we went to the hospital were they gave him a bottle and recorded the fluid going from his swallow to his upper intestines. It only took about 20 minutes and it was very invasive. The radiologist (dude doing the test) said that from his throat to his intestines were perfect!!! We've never received good news from a doctor before, it was quite refreshing. He said that his tummy looked very healthy and "well built". Yeah! What nice news. So what does that mean for our vomiting? Oh that means he's got a mental block with eating, it's called an oral aversion. He has something going on in his brain that tells his body that food is bad and needs to be thrown up. They did confirm he does have reflux. His GI doctor says he is about 6 pounds under weight, he only weighs 20 pounds and he should weigh 26 pounds right now. So more feeding therapy.

It's a Boy!

2009-03-10T11:52:00.004-05:00

My sister and her husband had their second baby Monday night, It's a Boy! He's super precious and a bit chunky. He came out at 9 lbs 1 oz just an ounce shy his brother. He has his brother's eyes, oh he's just beautiful. We cannot find his name tag anywhere on his little body so we don't know what to call him yet. Oh just look at those giant cheeks. He's already eating great and he has such a sweet little spirit already. Tonya has a cold and she's been a bit sleepy with cold medicine, but she's basking in all the newness of this little guy. Yep and I'm that crazy aunt that is loud and in his face and I just can't share him. Oh he's scrumptious, I just want to kiss those cheeks!

Elephants

2009-03-08T14:06:00.006-05:00

Elephants are pregnant for 2 years, my sister is close! She's 41 and a half weeks pregnant, she's 10 days over due. That baby is quite comfortable where it's at and I'm starting to think she's quite comfortable being pregnant forever. She's scheduled to be started Monday morning, so we should have that baby by lunch tomorrow! She doesn't find out what she's having with any of her babies, I just know it's a personal attack against me! How am I suppose to shop? Her first baby was right on time and still was over 9 pounds, sheesh, lets hope this one is able to come out!

Our New Wheels

2009-02-13T10:39:00.007-06:00

Check out our new walker, we got accepted to Shriner's! That hospital is such a blessing, what a wonderful organization. We were accepted for care and we've been to a couple of appointments already. We are now going to get Physical therapy and Occupational therapy there, we've already seen a great difference in the care just from Primary's rehab and Shriner's, we are very impressed. So, this is our new walker, it's designed to hold his body and work those legs and get us up walking in no time. Our new PT thinks we will be walking in just a few months with this wheelchair. Then we'll get a little pony walker where he just hangs on (it's a miniature old people's walker) it's pretty cute. In his new walker he's stuck in reverse, it might take a few days to get the hang of our new wheels. This is just about as adorable as it gets, don't you think

Mystery Solved!

2009-02-06T13:59:00.000-06:00

Funny Story: This week was filled with several Doctor visits, some follow up and some check ups and so on, just a normal week in our world. Our pediatrician and speech therapist are concerned about his mis-shaped head and how one ear is slightly higher than the other ear. So we got referred to a Craniofacial doctor. We are to check his jaw and head and see how it’s going to effect his speech and feeding. So anyone who knows me in real life knows that I don’t stand for the po-dunk doctors I have to choose the best of the best so I made my appointment with the head of the Cranio Department (I wont mention names). So we get there and are taken back, Doctor comes in gets our health history and he starts to exam Bug pretty thoroughly without saying much out loud, he’s writing and examining and writing and measuring and writing. I was pretty impressed so far, (remember not a word has been said yet), oh the dr’s wheels were turning. After about 10 straight minutes of examining, he then puts down his pencil and tape measure and…no joke…says “Its my opinion that the reason his head in mis-shaped is due to the Hydrocephalus.” WOW how many years of med school? He then said that he’s not sure he could do much for us and sent us away. We haven’t got the bill yet but I’m pretty sure that little piece of medical brilliance will cost us a pretty penny. SIGH

Surgery

2009-01-15T14:38:00.005-06:00

Bug went in for surgery on Tuesday to have Eye Muscle Surgery on both eyes and 2 Hydrocele Inguinal Hernia's repaired. Everything went really well. He was in surgery for a little over 2 hours and both surgeons said the surgeries went just textbook great.

Eye Muscle Surgery was to straighten out his eyes. They just went behind both eyes and tightened the muscles that controls eye movement. Before surgery, Bug's left eye would always stray out and he couldn't bring it all the way in, even if he was looking to the right. They said that we will see a difference in about 2 weeks but he got out of surgery with straight eyes. I guess it'll just get better over the two weeks. He does look a bit beaten though, both eyes are super blood shot, there's only red where there use to be white, they said they will be like that for a few weeks. They think he'll have to have about 3 of these surgeries before he goes to kindergarten.

Hernia Surgery was because he had 2 hernia's in his groin. I guess it's pretty common in preemie boys because the testies don't descend until the 38th week...ish in the womb so babies that are born before that sometimes have problems. Anyways I guess when the beans were dropping they created a hole in each side and those holes got filled with fluid and that's why they call it a hydrocele. So they made 2 incisions a ways below the belly button and sewed the holes. Apparently he's not suppose to have problems with it again.

Usually these surgeries are in and out procedures where you can go home after recovery, but because of bug's history (coding on the OR table or shortly after surgery) we had to be admitted for the night for observation. He did extremely well after surgery and has done exceptionally well since we've been home. Thank you to all who have visited and sent us baskets, and all the prayers.

Carter's 2008 Stats

2009-01-03T14:18:00.002-06:00

As most of you know, we've had a busy year. We knew we'd make it this far and we knew it would be hard, but we never knew how rewarding it would be! These stats are from Carter's birth (Nov. 2007) until the end of 2008. Here's our medical year in review:

6 Brain Surgeries
3 Other Surgeries
3 Code Blue's (full respiratory arrests)
16 Days of NG tube for feeding
114 Days on Oxygen
4 Failed Hearing Tests
3 Passed Hearing Tests
1 and only Failed Vision Tests
154 Therapy Visits
36 Doctor Appointments
25 Days Hospitalized
5 Days in Critical Condition
1 Blood Transfusion
3 Missed Holidays (due to being in the hospital)
8 ER visits
12 CT's
11 x-ray's
1 bout with Meningitis
1 bout with RSV
1 bout with Staff Infection
1 Ear Infection
4 Respiratory Virus'
Projectile Vomit several times a day

*and ten's of thousands of dollars out of pocket

But witnessed a miracle each and every day. He continues to grow and develop as he should. We've had a few bumps and delays in our path but we know every moment is priceless. We have grown so much as a couple and as a family. We never get bogged down on the little stuff like not sleeping or not going out. Our worries are different than other parents, we don't worry too much over an ear infection or if we are using the right diapers or whether we'll discipline like we should. We worry about Bug breathing all night, if he'll make it to adulthood or even adolescence, or when the next shunt malfunction will happen, and things like that. The constant worry is sometimes too much but we just focus on today and what's best for today.

I guess I better update the plan, we are going in for surgery on January 13th for 2 hernia's and eye muscle surgery. It shouldn't be a big deal, and if he does okay through the surgeries (meaning if he doesn't quit breathing or heart quit beating) then he'll be able to come home that night. Let's hope for the best. Keep praying!

Christmas Pictures

2008-12-30T15:43:00.005-06:00

Bug is at the ribbon and paper stage.

The Other Side of Hydrocephalus

2008-12-04T16:35:00.007-06:00

Okay, I guess it's time to update the medical side. I've gotten a few complaints that I only post the positive side of our Hydro babe and maybe I should keep this blog a little more real, so we'll start it off with last night's ER visit.

We spent last night in the Emergency Room. Since Sunday, Carter has had a temperature of 101.5 or higher, we just watched it assuming it was the MMR immunization he had last week. (The doctor told us to expect a temp). Well last night his temp spiked to 104 and started to projectile vomit (vomit is not uncommon at our house at least a few times a day). The high temp and vomit spooked us and we took him in. So they ordered a shunt series, which is a CT and x-ray to make sure the shunt is working & placed properly. Those came back good, huge relief, no brain surgery this time. So they said the temp was probably caused by a viral infection. But during her exam she asked us about his Hernia. To our shock we didn't even know he had a Hernia. Apparently this type of Hernia happens at birth and everyone missed it for a year, no harm I guess, but this means we need Hernia surgery in the next few weeks. We are already scheduled for Eye Muscle surgery this month. Sigh!

Neurosurgery:
We went to our yearly Neurosurgery appointment a few weeks ago, had another CT. Our ventricles have reduced in size, this is good news. More brain tissue showing and less CSF fluid, no optic area which explains the Cortical Visual Impairment. Doc says Carter looks great. Another appt in a year (unless we have problems, like last night).

Ophthalmology:
Left eye turns out more frequently lately. We scheduled Muscle Eye Surgery for this month, where they will just nick the muscles in both eyes bringing the eyes straight, thus seeing the same picture with both eyes instead of two pictures. Good prognosis to have good vision by kindergarten with the help of 3-4 eye surgeries and a few moments with an eye patch, Rrrrr!

Pediatrician:
Stupid Immunizations...again, yuck! Developmental eval, delayed but not by much. Mostly large motor skills, but that was totally expected. We're moving along well. He's pleased with his development. Ordered us to go to wheelchair clinic soon, to be fitted for a new car seat, (we don't fit in a normal car seat without cutting off the air way, so we have to have a special one made). Next appt at 18 months old. (unless we need him...we always need him)

Craniofacial Clinic:
This will happen this Monday, they will evaluate his head, jaw line, cleft palate, etc. and how it will effect our eating, speech, hearing and so forth. We'll keep you posted.

Surgery Clinic:
We go on Tuesday for Hernia eval, we'll keep you posted.

Vision Therapy:
Oh, we just love Jen our therapist, I think she was put on this planet for the sole purpose of our vision problems. I give her so much credit to his development, she's amazing. We work on tracking, in & out, textures, stacking, sorting, etc. We see her once a week.

Feeding Therapy:
Vomit happens...So we work on gag reflex, food textures, mouth desensitizing, transitioning into solids. This is quite a session, probably our hardest. We go to feeding a couple of times a month.

Occupational Therapy:
We work on environment sensory, he doesn't do well in busy places like daycare, or restaurants, or grandma's house. He doesn't like the vacuum, blow dryer or shower. He doesn't like any sound that suddenly happens. He doesn't even like noisy toys or weird feeling toys. We work on all the senses, smell, touch, taste etc. Also small motor skills in these sessions, this is every other week.

Physical Therapy:
Going well, we are still not sure if we love her though. She quiet and doesn't really talk to Carter which doesn't work since we like people to warm up before we get touched. Bless her heart I guess she tries. She works on balance, sitting, crawling, muscle control, things like this. We see her every other week.

So that's our busy life. Carter is such a trooper through every thing we put him through. It's a bit heart breaking as parents to stand by and see your baby go through all of this but we know it must be done for his future outcome. Our overall goal: to have him mainstreamed by Kindergarten and starting down the road to be independent some day. He is such a strong little guy with such a sweet disposition, we feel so blessed by his health and development, we personally know many families are not as blessed as we are.

I will try to do better at posting the overall picture of Hydrocephalus and our challenges as well as our achievements.

Go Shorty, it's your Birthday!

2008-11-30T17:51:00.004-06:00

Talk about texture therapy

What a nice boy to share!

Presents!
Bug played with this "hair ball" for like an hour in the store and just loved it.

Too much texture perhaps

We're still traumatized

Trying to Crawl

2008-11-15T13:21:00.005-06:00

Here is Bug's attempt to crawl, where there's a will there will be a way, right!?!

6 Teeth

2008-11-03T23:45:00.005-06:00

Halloween

2008-11-01T14:34:00.007-05:00

Look again...yep its them!

Hula Dancers (or drag queens)?

Our little lion!

More Halloween Pics

2008-10-21T15:21:00.017-05:00

We get around!

Stop! Pillowtime!

Mom vs. Dad

2008-10-07T17:18:00.002-05:00

Who won the First Word Battle? All that work and who get's credit?

WALK

2008-09-22T13:30:00.041-05:00

TEAM CARTER

Drum roll please...we raised $1,688.00 for research for the Hydrocephalus Association! We came in 2nd place for the most money raised and 1st place for the most people who came out and walked! I'd like to give an extra special thank you to those who have donated, those who went out and raised funds for us, and those who came out and walked with us. Your support will be forever remembered and your love is forever planted. You have made a difference in these children's lives and the outcome of their futures, thank you so much!

Thank you Amy & Jaxx, Pam, Chelsea & Gavin, Susan, McCoy & Cooper (By far the winners who came out ahead and still looking great!)

Thank you Bill, Anita, Melissa, Michelle & Steven (A couple of rest breaks, and a questionable lead)

Thank you Dave, Tonya & Garrett (1.4 miles, no big deal right?!?)

Thank you Mark & Pat (hurt foot and still smiling)

Thank you Jen & Jensen (Glad you found us!)

As all was said and done, who was worn out?

I just want to send out a special THANK YOU to all of you who donated who couldn't come out and walk. Thank you so much for all of the donations you gave and funds you raised, we feel so blessed from the support you have shown to our family.

All Teams

10 DAYS

2008-09-10T17:05:00.001-05:00

I just wanted to Thank everyone who have donated so far, we really feel love and support from all of our family and friends, we've collected $825 which is so great! Well there's only 10 more days of fundraising until our walk and we'd love more donations, so go out and bug all you know. We've got pledge forms if you need them, just let us know. So our walk is a week from Saturday at Sugarhouse park (just off I-80 and 1300 East) from 8:30am-1:00pm. They say there is fun stuff for the kids and a lot of them will be on trikes and scooters and bikes. So it will be a morning of family fun (I guess, we've just heard, we've never been). Again, thank you so much for working as hard as you have to help our family and so many more who are effected by hydrocephalus.

2008-09-06T15:04:00.001-05:00

Photo and video editing at www.OneTrueMedia.com

Dirt Bikes, School, Colds and Teeth

2008-09-01T01:02:00.000-05:00

Eric & Jordan ganged up and won the dirt bike battle. Doesn't he look cool!?! He hasn't ventured out of the garage yet. (shrug) Maybe we should get more insurance?

J also started school this week and he loves his new teacher, two good years in a row, can't beat that. Funny story, on Wednesday when he got home I asked if he had any homework, he said that he only had his spelling words to study for Friday's spelling test. I said to get them out and we'll practice them together. He said that he didn't need to practice because 'he's a great speller and it would only waste his time to study spelling'. I said that he should probably study them...just in case. After a brief argument on how it's important to do his homework, he kept insisting that he knows it all and studying would just be a waste of his precious time. So I thought I'd pull one over on him and I said that we would go over them once and if he didn't make one mistake then he wouldn't ever have to study spelling words again (I had this one in the bag, they were hard spelling words). He smirked and happily agreed to the deal. We went over 26 very tricky words and to my amazement he sailed right through them, no mistakes, not even a hesitation. Those darn tweens, just as promised I put away his spelling for the week. On Friday he came home with smiles from ear to ear test in hand, the big 100% right on top! Good job J!

Well we've been battling a little cold this week. Carter started throwing up and having the yuckies on Wednesday, the next day he woke up with a stuffy nose and fever. We took him in to the doctors and he only had a viral infection. Its really hard because most of these symptoms are signs of a shunt infection, so we were put on major shunt malfunction watch for the last few days. Luckily we woke up today and had a great day. We are definitely getting better. YEAH no hospital stay this time!

So the oddest thing, Carter has 4 teeth now, two bottom and two vampire (eye) teeth, anyone ever heard of that?!? I thought they get those two top teeth next. He also learned how to grind those pearly whites! I've seen Eric heeby-geeby every time Carter gets his mouth's orchestra going, it's pretty nasty but it makes me giggle.

2008-07-29T15:33:00.001-05:00

Hi Everyone, well a lot has been going on. We are planning our first TEAM CARTER hydrocephalus association walk to help raise money for research for those of us who are affected with hydrocephalus every day. Our biggest complaint is that no shunt is forever. As you know Carter will need a shunt for the rest of his life. His body will reject some and others will get infected and so on. We have met several children who have had somewhere between 40-80 shunts before they go to Kindergarten. Every time the doc's do surgery on the brain we run a risk of more brain damage. The researchers are working so hard to create smarter shunts that last longer, also shunt alternatives. So we would love you to come out and support Carter on September 20, 2008 at Sugarhouse Park.

Well we broke our first tooth, his bottom front. I tried to get a picture of it but he like to stick his tongue out so we have no picture.

He's cruising around all over. He is still not holding his heavy head up but that hasn't slowed him down. He's rolling and rolling and rolling. He can get across the room this way. He also tries to crawl (with his head still on the ground) he gets his legs just a movin and drags his head moving forward. I guess where there's a will there's a way, right!?!

Blessed

2008-06-23T23:30:00.000-05:00

Last Saturday Carter was blessed. Our families came from far and near to support us and it was great. Carter did wonderful, he's such a good boy. He didn't get "sensory overloaded" like we feared with all the new sounds, smells, chaos and people. It was beautiful, Grandpa Shields blessed him and Eric gave an impressive speech in front of everyone. My mom and Tonya did so much work setting it all up, they're so great. Carter missed most of it because he got too sleepy.

_______________________________________________________

Our BFF Jaxxon (Amy & Brian's baby) came over for a very fun play date, they gave knuckles and started wrestling, how cute!

Seeing

2008-06-03T20:13:00.000-05:00

Look at our new cute pictures, Tonya and I had all the kids pictures done, they turned out very cute. I thought it would be hard, but it wasn't a big deal at all. Carter smiled super big. Aren't they gorgeous, I just love them.

Well we went to the eye doctor last week and it went okay, we were there for about 4 hours so he could do a bunch of tests on his eyes. Anyways, he looked deep inside and said that everything looks good. All of his parts are there and appear to be ready to work. He does, however, have CVI (cortical vision impairment) where he has a delay in the process center of his brain. So technically he is legally blind 2200, what ever that means. The doc said that he probably wont have to do surgery or glass him anytime soon, if not ever. He thinks that the pressure is to blame and we just need to give him an extra push. He said that our therapy is doing the greatest good because we just need to teach his eyes how to see and how to process that info. So he prescribed vision therapy, which we've been doing since he was 3 months old, and we'll see him in 6 more months for more extensive tests. But he thinks by then he'll be just fine. So that's more good news.

Our vision therapist, Jen (we love her) came to our visit today and said that it's time to reassess Carter and his "goals". She was going over his goals that she set for him at 3 months old and it said that he needed so much work, she even set unrealistic goals for him, knowing he would never reach them, or maybe reach a few of them in several years. She put in the report that she thought he would be severally delayed in his development, motor and vision forever, never reaching normal milestones. Well today we reassessed him and he's totally on track for everything motor and developmental. He blew right through her goals. He is rolling and trying to get all around, he's reaching and tracking, no texture problems, he's doing everything a 6 month old should be doing (except holding his own head). She almost cried, she's so cute. He has achieved so much and seems to be totally neurologically intact. She said she's worked with several hydro babes and he doesn't seem to be following any of that behavior. How great is he, isn't this wonderful!?! Jordan sat through our therapy session today and decided if the professional soccer career doesn't quite pan out then he now wants to be a vision therapist, how cute.

6 months and so big!

2008-05-18T11:36:00.000-05:00

Our Carter-bug is doing so well, he is 6 months old now and weighs 16 pounds. The doctor just cleared us to go out of the house and "resume life" Hallelujah! So we've been to 2 restaurants and lots of family parties and just this weekend we went to Jordan's soccer game. It was exciting, he loves to be out, he's very social.

Just lately he's learned to roll all the way over! Just when we thought we could let our guard down, he's now mobile. He doesn't stay in one place long. We also work super hard every day to build those neck muscles, he's almost got the hang of it. We fired our physical therapist because she's lame and so we've just been winging it, I research what to do online and we just do it. Our "therapy" is lots of neck strengthening exercises a bunch of times a day, apparently its pretty funny, we just giggle the whole time. We don't really know what we are doing, but we have fun so whatever.

All of our research and our support groups and our therapists all prepared us for a terrible eater. Most Hydro babes are on feeding tubes for years and have a real gaggy reflexes, they also have problems with textures, so we were going to start texture therapy just to get ready for solids. Judging by the size of those cheeks and don't forget a few chins, we thought we'd just try some oatmeal, and to our surprise, he loves every bite. We're packing on those pounds and loving every minute.

We are going to the ophthalmologist (eye doctor) next Wednesday to check those eyes. He's been receiving vision therapy for several months now, our vision therapist thinks he's got "CVI, cortical visual impairment" which is an impairment that is in the process center of his brain. Basically when your eyes see something, the information travels through your brain and deep in the back is where your brain processes that information and tells your body what it needs to do or know. He has a slight delay in that process. So she thinks he'll need a little surgery on one eye to nick a nerve and a couple of years of vision therapy (and maybe cute little eye glasses) and he'll be able to see just fine. Vision problems are very common in Hydro Babes and I've learned that his team of pros almost expected it. It was no surprise because most of the fluid in Carter's brain is stored right on his optic nerve. We are learning as we go, we'll see what the doc says next week.

Our Miracle

2008-04-24T00:20:00.000-05:00

Carter turned 5 months old on the 20th and he's doing great. Early signs show no brain damage and not too many effects of the Hydrocephalus, (well except our head). He has hit every milestone and is completely normal compared to any 5 month old. His vision is improving every day and is now where it should be for his age. In some areas he is doing things well before the average age. He doesn't seem to have any handicaps so far. We are not sure about learning disabilities until he's older but so far he's developing just like a 5 month old should. Just the past few days he's managed to roll his body almost all the way over, I don't think he's going to let it keep him down too much longer. He doesn't stop giggling all through the day, and sometimes into the night. Jordan gets instant smiles and always gets the best belly laughs. We went on a walk the one day it was nice and he loved every minute of it. Hopefully we can get out again soon. Baby massage is our favorite part of the day. Our therapist came in and professionally taught me and Grandma Shields how to give a great massage. Carter loves it but it's suppose to be soothing and calm, Carter however is pretty ticklish and giggles through most of it. Oh and he found his thumb, we know we should take it away but it's just too cute (there's a picture on the side). We absolutely love and enjoy each and every day with our little Miracle Baby!

ERIC & CARTER

2008-04-06T20:49:00.001-05:00

Here is Eric at 4 months old

Here is Carter at 4 months old

Rehab

2008-04-04T23:43:00.001-05:00

Carter fell asleep during his rehab visit, that sure is hard work.

4 Months Old

2008-03-26T17:23:00.000-05:00

We just went to the doctor for Carter's 4 month check up, and all is well. He is getting so big and strong. He weighs 15 pounds and is 26 inches long, he is doing absolutely wonderful. Most of his day is spent laughing at just about anything that happens. Sometimes we can't even get through our bottle because we just want to play and giggle. He is sleeping about 9 straight hours at night, how lucky are we.

We have a few therapists that work with him all the time. We have a vision therapist that comes to our house once a week for about an hour and works with him to help him focus. She's been coming for a month now and she said that Carter wins the "most progress in the shortest amount of time" award. We also have a physical therapist that comes every couple of weeks to help us with our head and positioning. She's not too great though, she says wacky things, we don't love her.

When Carter was first born he failed 2 big hearing tests. The hospital sat us down and told us that he will be deaf forever, and sent us on our way. It was terrible. We took him home and always treated him like he could hear. About a week later he started responding to our voices and different sounds so we knew deep down that he could hear. Well, we went in and did another test about 2 weeks ago where they hooked up some sensors to measure his brain waves to different sounds. He Passed the test just fine this time. They said that his hearing was completely normal now and everything in there looked great. Apparently it was just the pressure on his ears. We are hoping that his vision problems have a similar outcome.

We went on an outing to brunch on Easter morning with the family and he loved it. We were a bit nervous and kept him in his car seat the whole time, but it was a start.

Carter is such a happy guy with the sweetest little spirit. He's been such a delight and a wonderful part of our family. We are enjoying every minute of every day, we hope to bring him around more often. We thank our Heavenly Father every day for our blessings, he's just doing great.

3 Whole Months

2008-02-25T19:40:00.000-06:00

Our little angel is doing great. We just celebrated 3 months old! Carter thought singing Happy Birthday was just about as funny as it gets, he giggled and giggled all through the song. He is super fun right now, his little personality is sure showing. He just smiles and giggles all day long, well in between all those feedings and naps, what a hard life. He's getting so big, Cassie let us borrow her gorgeous bassinet when he was born and it worked so well and the other night out of the blue he didn't fit in it anymore. We just upgraded to the next size clothes and those cute little diapers are now not so adorable. He loves being sat up and looking all around oh noisy toys are pretty cool too. Jordan gets the best laughs and smiles, he's a great big brother. We are really excited for cold and flu season to end, we'll be out and about more and ready for all those visitors. Thank you for respecting our "no sick visitors" policy. Hopefully it will get a bit easier soon. I am going to post pictures more often because he's just too cute not to. Keep those prayers coming we're loving all these blessings.

Family Updates:

2008-01-24T16:38:00.000-06:00

Hi everyone, good news this time. Carter is doing great. We've been home for 2 weeks now, he's off oxygen and looks so good. He just started smiling so big and often, it just melts our hearts. His eyes look alert all the time and he's getting so strong. He is eating good just check out those 2 chins. He has hit all of his milestones so far, he has exceeded all of our expectations! He is starting physical therapy soon to help strengthen his neck muscles to hold up that heavy head. So all is well so far. Jordan's birthday was yesterday, he's 11, I know, he's getting so big. We are almost the same height, I think he's going to be tall like his uncle Ben. Well thanks for all the wonderful calls and concerns while we stayed at the hospital this last time, we really appreciate all of the support you've shown to us.

2008-01-08T10:32:00.000-06:00

We are still in the hospital (see below for full story) but things are looking up. Carter had his surgery on Friday (Jan. 4th) to get his new shunt put in. This one is on the other side of his head, but it looks good. He did good during the surgery and everything was looking great for us to go home the next day. He woke up Saturday with a cold. He was coughing and his eyes looked a little sick. The Neurosurgeons came in that morning and said that we could go home. Our cute nurse said that she was going to send his stuffiness off to be tested and it came back RSV. So we unpacked and settled in for another few days. All of our hospital neighbors have RSV so it wasn't a total surprise that he got it. All they do for that is give him some breathing treatments (kind of like asthma treatments) and suction his yuckies out of his nose and give more oxygen and then just wait and see how he does. The doc's came in this morning and said we can go home tomorrow (Wednesday) if he continues to do good. He's hanging in there and being so very brave. It's going to be nice getting him home where he can finally relax.

Not So Great News

2008-01-01T22:34:00.000-06:00

We are back in Primary Children's. Carter was doing so well the few weeks between hospital stays. He was on room air and off oxygen. He was eating well and doing great. We brought him in on Saturday Dec 22nd, just because he had a slight temperature. I called his doctor and he said to rush to the ER and asked if we needed an ambulance. I thought he was crazy, an ambulance for a temperature? We loaded up and came into Primary's ER. They did a few tests, doctors rushed in and took up to the Intensive care unit in critical condition. The tests found a shunt infection and a staff infection. On Sunday he had to get his shunt taken out and a temporary external drain put in. Its a tube that goes from his brain to a bag to collect the spinal fluid. They started an aggressive antibiotic treatment and they test this fluid each day. It has to test negative for infection of 14-21 days and then they will put his internal shunt back in. Well Sunday after they put in the external drain, we were taken to our room in very stable condition. The nurse came in and gave him a dose of Morphine for pain. His stats (heart rate, oxygen rate and respiratory rate) started dropping right away and he went into cardiac arrest. His heart stopped beating and he completely stopped breathing. They called a code blue and about 50 people came running. They had to give him chest compressions and ventilation tube to breath for him. They called for a drug that reverses the effects of morphine. They ran that up gave it to him and he snapped right out of it. He was stabilized and taken in extremely critical condition back to the Intensive care unit. That night he had a terrible time breathing. He would stop breathing for 30 seconds at a time, take about 6 shallow breaths and stop again. He did this for about 2 hours then he started to have mini seizures. The seizures lasted for another couple of hours, then as fast as all this came on it stopped. These were all terrible effects of the morphine he was given. It took about 15 hours to get out of his system. If that's not bad enough, during his code they accidentally yanked out the drain from his brain. So Monday morning (Christmas Eve) he went into surgery again to replace the drain. They gave him another narcotic drug named Versed which is a popular generic narcotic commonly used in surgery, they gave him the slightest dose and he started coding again. This time his heart didn't stop but he completely quit breathing. They had to stop the surgery and bag him again. They gave him the reverse drug for Versed and he again snapped right out of it. So in a nut shell, he cannot handle any form of narcotic. He does fine with general anesthetic but no narcotic drugs, which is so sad because we have several surgeries and he cannot have anything stronger than Tylenol for pain. The next couple of days (including Christmas day) he was considered in critical condition. He had to get a PICC line placed which is an IV that goes directly into his heart for medication and fluids, usually they put them under sedation but Carter cannot handle that because he had coded twice so they had to place it while he was awake, what a nightmare. It was the worst experience of our lives. We were then moved to a normal hospital room where we are just to bide our time here. He has to test negative of infection every day before they will put his normal shunt back in and we are on 7 days today without infection. We've had a few ups and downs in the past few days but nothing compared to what we went through the first few days. We will be here for 2 to 3 weeks this time. He's testing low for his blood count and just today received a blood transfusion and did awesome. It should give him more energy and make him feel better. He already looks much better. They are planning on replacing the shunt on Friday (Jan 4th) and if all goes okay we could be home by Monday. I'll keep updating this site through out the week. Please keep him in your thoughts and prayers.

Update

2007-12-09T18:00:00.001-06:00

Hi Everyone,
I know, I know... sorry for not updating until now, I'll try to do better. Well, we came home on Monday Nov 26th from the hospital at 6 days old. He had his shunt placed on Friday Nov. 23rd (2 days old) and that went so well. It took a little less than an hour and he was out of surgery. In the recovery room he already looked great, his eyes were focused and his head had already gone down in size. The neurosurgeon said that the surgery went so well and Carter did great. We stayed at Primary Children's for a few more days. Carter was having a hard time eating, maintaining his temperature and keeping his oxygen up. So we came home on machines and monitors. He had a feeding tube called an NG tube that goes into his nose, down his throat and into his tummy. He was order to eat what he can by mouth and the rest we had to feed down his tube. He was also sent home on oxygen and we were given a pulse/ox machine to monitor his oxygen levels and heart rate. He had a bunch of great days eating and last Tuesday we were able to remove the feeding tube. Hopefully soon he can be taken off everything, we have to keep his hands covered, he's already learned to rip out all of the tubes. Developmentally he is doing everything that a 2 week old does. He is just doing amazing. We have received a lot of calls for you all to visit. We would love the visitors but his doctors say that he is not strong enough for kid's to come visit. All of his doctors and nurses that prepared for him say that he is indeed our miracle baby! We, however, believe that miracles have little to do with him. We know that he is our blessing and all our prayers have been answered. Thank you to all of you, our family and friends for all the prayers, love and support you have all shown for our family. The power of prayer works he is proof!

Carter Shields

2007-11-24T19:15:00.000-06:00

(posted by Amy) Little Carter arrived on Nov. 20. He is a healthy little boy and weighed 8 lbs., 4 oz. and was twenty one inches long. He's got the hands and feet of a future basketball player. I'm posting this update for Lara and Eric while they are still in the hospital waiting for the green light to take little Carter home. I went to visit them today and Carter is doing great! Here is a photo of him sleeping…isn’t he precious?!

He had surgery yesterday (Nov. 23) to have the shunt placed in his head to drain the fluid. The Dr. said that everything went well and he is doing great. Lara said that as soon as he is eating enough, they can take him home. Can you believe it? Homeward bound already…wow! I am so happy that everything is going so well for the Shields family.

Congenital Hydrocephalus

2007-11-01T15:05:00.000-05:00

Most of you know that our precious baby has a condition called congenital hydrocephalus, which is simply fluid all around his brain. There are 180 different causes and we've went through about that many tests to figure out what caused it, and the finest doctors haven't been able to figure it out. We found out through the routine 20 week ultrasound. We were devastated. We just expected pink or blue and we walked out of that office with our lives changed forever. We've since excepted the condition and we truly feel blessed that he has been sent to us. We know that he is an angel that will touch our family more than anything in the world could. Since our 20 week ultrasound we've been through 11 more ultrasounds, amniocentesis, an MRI and we've met with numerous specialists to learn and prepare. After all of that, all we know for certain is that he will need a shunt placed into his brain the day or two after he's born. We are delivering at the University of Utah hospital and he will be at Primary Children's. We feel comfortable with the doctors we've chosen. We are delivering on November 13, 2007 and we will keep everyone updated as news comes in. We would like to thank our families and friends for all the love and support that you have shown to us, we know we have some hard days ahead and your support helps us know that we can get through each day.