Valentine's Day

Happy late Valentine's. We didn't get to celebrate, we were in the hospital with Casey. I am not sure what is going on and it's apparent the medical community is at a loss right now too. Casey went to bed at 8pm on Wednesday and just wouldn't fully wake up on Thursday. I tried bribing him with food, milk, even The Wonderpets but he was just a little blob on the floor. Eyes open, starring off into space he wouldn't answer to his name or anything. As Ming-Ming would say:

After consulting with his pediatrician we decided to take him to the ER. They ran every test imaginable on my little man. CT, xray, ultrasound, EKG, spinal tap, arterial blood draw, lab work, etc...all that came back was some key tones, low blood sugar and elevated levels of acid in his blood. We were admitted for the evening after he had another "episode" and didn't respond when given his IV. He was so out of it. We were released only to come back the next day. The pediatricians then suspected seizures or a metabolic disorder. We are still at a loss and scratching our heads. Along with the weird episodes the test results came back showing the same shadow in his lung that has been there since his last chest xray in October. Yet another mystery. Our local pediatrician team has referred us to Mayo, so we will be headed to Rochester in the next week for extensive testing as well as more testing back home. While this is the "short" version, I just wanted to start keeping people up to date before I fell behind!

Tomorrow is the EEG to test for seizure activity...we have to sleep deprive him tonight, wake him early tomorrow and then proceed to not let him nap until the EEG at 1 pm. Wish us luck, we need it!

Thank you to all my friends for texting and keeping us in your thoughts and prayers, we really appreciate it!

Naive

I am guilty, I am guilty of thinking that Casey's craniosynostosis would fix itself after surgery. I naively thought that he would be fine after, no complications, no follow up surgeries...we'd just be on our merry little way. Well I guess I was wrong. And it sucks.

It's not the Casey isn't a perfect little 2 year old, because he is. He loves his cars and dinosaurs, he loves his Auntie and family, he has taken to his little sister like white on rice...he sings and dances, climbs and tumbles, laughs and cries, but he doesn't talk. Only one word constantly. Go. Go! It's the only word we hear and it is what he loves to say. My sweet boy.

I've noticed Casey was delayed in speech for what seems like forever now, something in my mommy instinct knew something just wasn't write. It couldn't be. He had said some words, like mama, dada, banana...but very rarely and almost "on accident". My first thought was just a delay, then I thought of autism. I talked to several people about my fears and I was reassured that it wasn't the case by birth-three, his neurosurgeon, his speech language pathologist (SLP) and his pediatrician. He took the MCHAT 3 times and "passed" every time, but something just wasn't right.

I was told "he'll talk when he's ready", "my cousin didn't talk til he was 3", "just give it time", "take the pacifier away" but it didn't seem to dawn on anyone that perhaps this was more than a stubborn little boy who liked to talk "non-sense". His frustrations were growing, as well as ours and it was so hard to see him upset because he couldn't express himself. I was also growing frustrated at friends and family members who thought I was crazy for being worried, for researching and for making medical appointments.

Than I found it, the link between speech delay and craniosynostosis. It also mentioned how the SLP should be part of the process of treatment from the very beginning. We were told that learning disabilities could happen, but it would be rare. I was naive, we wouldn't be part of that 10% and yet here we were. Casey started speech therapy almost a year ago and has a fantastic SLP, she works tirelessly with him, coaching him, guiding me, using all the tricks in her book...nothing. No words. He's stopped trying, he literally buries his head when asked to mimic. He loves to play with us, but don't ask him to repeat, don't prompt him or he'll have a melt down...but show him signs and it all clicks. He learns them, their meaning and then applies when without being prompted immediately.

I guess the puzzle pieces started clicking for the SLP. We knew Casey's hearing was fine, he's had to tested a couple times and passed both times with no concerns. He was vocalizing but not making any sense, his receptive language skills were at and above his age level, he's expressive were rated at that of an infants. Though she wasn't sure, our SLP had begun to expect Childhood Apraxia of Speech as a cause of Casey's trouble speaking. We had ever heard of CAS but once we researched it and asked our pediatrician we all agreed it appeared this was the case. Casey also then had several appointments with the local university's speech department and they have come to the same conclusion.

Back to the craniosynostosis, when Casey had the surgery in July of 2011 we were told it would be a one-and-done. The Pi Procedure had left some openings, some "soft spots" that would correct on their own. We weren't to worry about it, just come in every year for a check up. Well his one year check up came and he had his follow up CT scan. It showed those soft spots had not yet begin to heal, which was odd, but we were told to just follow up again. I called to talk to his neurosurgeon and plastic surgeon recently and discussed that they seemed larger, and also talked to them about Casey's speech delay, both of which were concerning to them. We were supposed to meet with them this summer, but it was pushed up do to these factors.

In March we will be heading back down to Rochester to meet with his craniofacial team. He will undergo another CT scan (we will sedate from the get-go this time, last time was a disaster), and then we will meet with their SLP, a geneticist (to see what his gene make up looks like, to see if his craniosynostosis is related to a syndrome), his neurosurgeon (to assess language development and inner cranial pressure) and his plastic surgeon, all to schedule a second surgery this summer to correct those dreaded softspots.

Those are the details, I really tried not to get into the emotions...that's a whole other blog. Ugh.

Wow! Update Time!

Holy Crap! I have not updated since my little man's surgery! I have been so busy and honestly just spaced it all out between the surgery, quitting work, school, Casey, the holidays...wow!  Here are some pic's on the little man's surgery that went down on July 6th.

Casey and Daddy in Pre-Op.

Casey was asleep for quite awhile, but always with the Nuk!

Starting to be more active.

Driving around the children's floor at Mayo :)

Here is when he fell in love with fishes :)

By the ride home he was happy to be out!

Finally, some rest!



The surgery went well and our doctors were amazing! He did have a reaction to the anesthesia and couldn't keep any food down while he was in the hopsital. He also required 2 blood transfusions which was scary. We are almost 6 months (!!!) post-op now and you can't even tell he had surgery! :D

Thank you for all the love, support, prayers, visitors, cards, emails, presents and everything. We truly, truly appreaciate it!

July is...

"You wouldn't be shattered on the floor now
If only you had seen what you know now then"

(Taylor Swift)

 

It got me thinking, before Casey's diagnosis we had never heard of Cranio...we didn't know we should be concerned about his head shape...to us it made sense, long skinny baby = long skinny head. It didn't stick out to us. The doctors didn't seem concerned, no one mentioned anything at the baby-well appointments until now. Looking back it's been so obvious. It's even more common in premature babies...why didn't someone check? Why didn't we know? Why didn't it trigger an alarm somewhere? It doesn't have to be this way for other families and other babies...early detection is the key.

 

Please visit my "Resources" blog and look up what you can, educate yourselves and others. Maybe just keeping it in the back of your mind will help someone, someday.

 

 



Just checked my mail...

I always like to check the mail, even though nohting really comes without a stamp that says "You're pre-approved!" but today there was a package waiting for me, and a huge envelope. Well I decided to open the envelope first, as it was from Mayo Clinic. Inside was a 17 page booklet, the first 2 pages were appointments that have been made for July 5th followed by 15 pages of instructions. My eyes were welling up as I moved on to the package,

The package had a return address of Cranio Care Bears, and of course I got excited. My wonderful new friend, Shelby, is a Cranio Advocate for them and told me a package would be coming. It couldn't have come at a better time. It was full of fun stuff- hats, slippers (for both me and Casey), flip flops, wisps, candy, hats, some toys, a super soft blanket and a journal...but what really got me was the beautiful prayer chain they sent.

Now some of you who know me well, know I am not a very religious person, but this moved me so much. Those tears that were welling up earlier were just coming out now. Beautiful and colorful, it is meant to hang from Casey's crib after surgery and there it will remain until we go home where it will find a place in Casey's nursery. It has advice from Cranio families, a little note from a young Cranio kid, and quotes that will stick with me forever, like "Some say I was born with a crooked head, but I like to it's where God kissed me instead" and "They say there is a smile waiting for you on the other side of sadness"...but it was the note from Shelby that said it all...

"Anyone can give up, it's the easiest thing in the world to do.

 But to hold it together when everyone else would understand

 if you fell apart, that's true strength"

Thank you Shelby Davidson and Thank you Cranio Care Bears... I hope someday I can repay the favor.

Cranio Resources

Cranio Angel Network

Cranio Care Bears

Cranio Kids

Cranio at Mayo Clinic

Mayo Clinic in Rochester

The Waiting Game

I feel like a kid in a car...are we there yet? In a week we will be leaving for Rochester to start pre-op workups, like blood-typing and more imaging. We should be getting the call for exact times...it all seems to be hurry up and wait. I do know it will be super early in the morning, they've advised us to come to town the night before.

I keep checking the calender like I check the clock. 9 days...

We have awesome support. Not only have our friends and family been supportive, but support groups have reached out to us as well as some amazing individuals who have been though this all before. I hope to someday have the strength they do.

Right now I am a piles of nerves, it feels like my heart is in my throat. I think I am doing great, then I breakdown out of nowhere. I was at Kohl's looking for some 12month zip-up/snap-up outfits for Casey and I could find every size BUT 12 month. Do manufactures think babies stop needing those once they magically hit that size?! Anyway, I just stood there and started to cry. I know it was something so trivial, but something I really wanted to do that I knew could make Casey's life easier. I ended up finding one pair and later found a Florida Gator's Mascot outfit on clearance...well I had to buy it!

Look, his first Popsicle! :D

Ok, well I am off...trying to get everything in order before I lose my mind. The upside to this all is I have been in touch with a very nice woman whose son has had this surgery 2 years ago and all her advice and information sounds so promising. It helps to know there is such hope and promise and like I discussed with my friend, we are so lucky, it could be worse!

Scaphocephaly (Saggital) Craniosynostosis - The Techincal Side

Our world has been rocked. One day I am taking Casey in for a doctor appointment regarding his back and before I knew it I was leaving with a referral to a pediatric neurosurgeon. We were sent to Mayo Clinic is Rochester yesterday to meet with a team of doctors to determine if his plates in his head have prematurely fused. As my friend Nicole said, Casey does everything a head of time (including being born) so why would this be any different? We were joking about that on the way to Rochester and telling Casey what a long trip we were going on to be told everything was just fine. Well, it wasn't...

Once we found our building (one of the many Mayo buildings in Rochester), got our car parked and got Casey up to Dr. Clay's office it was less than a minute until he was diagnosed. The doctor walked in the room, looked at Casey and said "Oh here's our Saggital Baby...yup! Any questions about surgery?". Needless to say we were dumbfounded and the doctor mentioned we looked like deer in headlights. Of course we had questions.

What is Saggital Craniosynostosis?
Mayo Clinic's website says "Craniosynostosis is a condition present at birth (congenital) in which one or more of the joints between the bones of your child's skull (sutures) close prematurely, before your child's brain is fully formed. As a result, your child's brain's growth is inhibited and your child's head develops into an abnormal shape" Casey's Saggital plates are the ones that have fused, which makes his head long and narrow as his brain attempts to grow out the back.

(http://www.yoursurgery.com/ProcedureDetails.cfm?BR=4&Proc=79)

How did this happen?
They have no idea, but it happens in 1 in 10,000 babies.

Will this one surgery cure him?
Maybe, he will have many appointments during the next couple years.

Is this genetic?
They are not sure, but Casey will be participating in a study.

Will he need Helmet Therapy?
No, they will use a plate to fuse his skull along with some screws, so no helmet will be needed.

What procedure will be used for the surgery?
The Pi Procedure.

(http://www.yoursurgery.com/ProcedureDetails.cfm?BR=4&Proc=79)



This is the scar it will leave...as seen on a baby from babycenter.com. They zig-zag it to help the hair grow back in a more natural state.

What will the surgery be like?
Mayo Clinic is doing Casey's surgery and their website states:
"The purpose of surgery is to relieve pressure on the brain, create room for the brain to grow normally and improve your child's appearance. A team that includes a specialist in surgery of the head and face (craniofacial surgeon) and a specialist in brain surgery (neurosurgeon) often performs the surgery.

• Traditional surgery. The surgeon makes an incision in your infant's scalp and cranial bones, then reshapes the affected portion of the skull. Sometimes plates and screws, often made of material that is absorbed over time, are used to hold the bones in place. Surgery, which is performed during general anesthesia, may take up to seven hours.
• After surgery, your infant remains in the hospital for at least three days. Some temporary facial swelling is common after surgery. Complications are rare. Some children may require a second surgery later because the synostosis recurs. Also, children with facial deformities often require future surgeries to reshape their faces.

We have also been told Casey will be brought down 2 days before the surgery for more imaging and blood-typing. With this surgery he will need a full blood transfusion. We were also informed that Casey will be spending a night or two in the ICU. He will be bandaged like a little mummy, his eyes swollen shut for 24-72 hours.

I know I have more questions, not that I can think of them right now. I can't think at all. I feel numb. I do know that Casey is a little fighter. I will keep you updated on our journey through this...keep us in your thoughts, please!

Our trip to Italy...

I know Cranio is not the same as a "disability" but this poem perfectly describes how I feel today.

"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."

© 1987, by Emily Perl Kingsley. All rights reserved.

Today I could use a swim in the ocean.

Bobbing up and down in the waves.

Preferably on a secluded beach.

 By myself.

Tomorrow you can come. :)

NICU Pictures

I apologize...apparently I can not "rotate" my pictures, so some are sideways. Eek! :)

I lost 47 pounds...didn't really have a baby belly!



Getting ready for surgery.

Below: 4 months!!! :)

Casey's Story

A lot of people have been asking about Casey and how's he's doing and exactly what caused him to be a preemie. Well, I have decided to write it down in one spot to avoid having to write it multiple times. If you're interested read on, if not, that's cool too! :)

Last year, about this time I found out I was pregnant! YAYYY! We thought we couldn't get pregnant due to PCOS, so we were surprised to say the least but over the moon. My pregnancy was full of the normal pregnancy symptoms at first, but then I developed Hyperemesis Gravidarum and proceeded to puke every single day, more than once through the remainder of my pregnancy. Also, a couple months into my pregnancy, my hips decided it was time to turn out and caused my hips to pop in and out of joint. With the combination of these symptoms and the regular ones I was taken off of work and put on scheduled rest.

That summer we found out we were having a lovely little boy, we also found out my blood pressure was creepin' up. One one of the routine ultrasounds they noticed Casey wasn't growing as well as he should and he was only in the 23rd percentile. Not a big deal, they said, just something to watch. We have additional ultrasounds coming up anyway due to lack of heart views, so we weren't too worried. Our next ultrasound showed Casey coming in at the 14th percentile, the next one the 9th...and then they started to worry. For some reason Casey had developed IUGR . The doctors aren't sure of the cause, but they mentioned that he would have to be monitored carefully.

The months ticked away and I was on and off bed rest, and Casey was slipping in the ranks. By the end of September he had gone down to the 3rd percentile. Not good news. He had also stopped moving in the womb, so I was at the doctor everyday being monitored and issued a Non-stress Test. He was hanging in there, but when we came in for our appointment on October 1st we knew something wasn't right when the doctor gave us steroids to take for Casey's lung development and got on the phone with Mayo Clinic. I was put on strict bed rest for the weekend and was asked to come back on Monday.

October 4th we reported for our appointment, only to be met with a flurry of nurses and doctors, but my doctor was still on the phone with Mayo Clinic finalizing a Medic Flight for me to their hospital. I was scared, but somehow they talked Mayo in to letting me stay in my city and stay in our local hospital. I was admitted by the end of the morning and would remain there until Casey was born. He wasn't due until November 25th, so I was in shock about spending 2 months in the hospital but the doctor informed be we would be lucky to be able to keep Casey in for a week.

Well let's just say he lasted more than a week! I was hanging out, bored to death on hospital bed rest but I knew it was worth it to save Casey. I had lots of family and friends coming to visit, making sure I wasn't losing my mind and I made some friends with the nurses. I even started charting my own paperwork at one point. Casey was passing his tests and I was catching up on Project Runway one day at a time.

On October 25th we had our bi-weekly biophysical profile when the ultrasound tech looked a little alarmed. I had learned not to panic but between the look on her face and the lack of amniotic fluid I was  already nervous. They asked me to turn on my side and drink juice. They started using the buzzer and jiggling my belly...nope, Casey was not going to move. His heartbeat was strong, but after a half hour he had yet to move which meant he failed his test. Before I knew it nurses were coming in, asking me to call my husband and surgery had been scheduled.

I was 34 weeks and 4 days...Casey was going to be born exactly a month early. I was prepared to do this, the kind nurses had already taken me in a tour of the Special Care Nursery where he would need to be taken for assessment. I was scared but J let me know everything was going to be ok and the entire staff was reassuring. While I had planned on a "natural birth" we knew that couldn't happen, Casey was too small to go through the stresses of induction and labor and also the little stinker was breach! At 6pm I was wheeled into surgery and at 6:36pm Casey was born! 4lb8ox and 18.5"!

He made it though the surgery ok, but took a little while to "pink up" and his oxygen levels were a bit low. He was taken straight to the NICU and my husband went with him while they delivered my placenta and stitched me up. In recovery they wanted to give me morphine but I insisted on seeing my baby first, so once I was stable the wheeled my entire bed into the tiny little nursery and I got to touch Casey for the first time :) We were not able to hold him yet, but it was nice to know he was doing ok.

They had an oxygen dome on him for a day, but after that he didn't really need it. On day 2 we were able to hold him for the first time. I was so nervous, there were so many wires and monitors but nothing could've stopped us. We were already so in love. The had mentioned that he wasn't able to take food yet, so they would have to insert a feeding tube. I was terrified but knew he needed it, and it really wasn't that bad.

We spent the next 18 days in the NICU. Casey was doing good, except the occasional Brady, he was in and out of his incubator. He had to learn to eat on his own, gain weight and be able to maintain his body temp. He was such a trooper and before we knew it we were heading home!

4 months later Casey weighed in at a hefty 14lb12oz and 25 inches and is hitting all of his milestones. He's such a happy baby and loves to smile and roll around. It's only a matter of time before he takes over the world! Yay Casey!

I will make a post of NICU pictures, which aren't on my facebook. I wasn't sure people wanted to see a baby all wired up with a feeding tube, but we think he's a beautiful little fighter. :)

Fear the fuzzy...

This was posted on a board I am part of, and I just wanted to share because it made me smile...and we all deserve to smile!

New to this...

I would address this as "Hi Everyone" but no one reads this! :)  I am new to blogging and really just plan to use this as a tool to express myself and maybe someone will care. I just need a new outlet and using my Facebook Status just isn't cutting it. I was always the girl who loved writing essays, so I am just going to think my my day-to-day life as one big question to be answered.

A little about myself...I am a lady in her late 20's who is married to the love of my life. Seriously. I couldn't ask for a better man. We met in 2008 and by August of 2009 we were married. <3 We just welcomed our first child, a little boy, this past fall. The pregnancy and birth were a bit of a roller coaster but he is here, healthy and thriving; we couldn't be more thrilled. We live in a little city in Wisconsin where he works and I work and attend school. It's a busy but wonderful life.

I tend to want to say a lot of things to people, but can't find the right words at the right time...or what I want to say isn't, ummmm, so nice or the popular opinion. Anyway, here I will lay it all out and you're welcome to join me in the adventure that is my life...