Almost a year ago...

My mind has been all over the place this week but I keep coming back to one thought... where we were a year ago. It was this week last year that Finn was officially diagnosed. We saw neurosurgeons, plastic surgeons, nurses, pediatricians, ultrasound technicians. I felt like I lived at CHOA and was becoming a sponge for all things cranio. I will hear songs on the radio that came out last September and it will take me back to those short but yet eternal drives to Scottish Rite.

Now here I am zipping him to and from school 3 days a week, listening to him say a new word every day and planning his 2nd birthday. He has amazed me with his strength this past year. He is also smart, funny and sweet as can be. He truly makes my day better and puts a smile on my face when nothing else will. You would think there is nothing to worry about. But the thought of returning to all of these doctors for his one year post-op visits still gives me anxiety. All of the same concerns are still there that were 6 months ago. Is his skull healing? Is his head shape what the doctors had hoped it would be? Did they over-correct or under-correct? Will he need another surgery?

He is scheduled to see his plastic surgeon on November 20th and his neurologist on December 10th. I will be sure to update after those visits. His official cranioversary is Wednesday, November 12th and, as luck may have it, school is closed that day! We'll have to plan something special and fun that day!

As for baby # 2! She is growing bigger by the day and we are all very anxious to meet HER! That's right - Finn is getting a baby sister! Our 20 week appointment with the perinatalogist could not have gone better. Things all appear to be fine and "her head is perfectly egg shaped" according to the doctor. I will have another sonogram at 28 weeks to make sure things are still looking good. But we are blessed that she is appears to be healthy and that there are no causes for concern yet!

Slacker

Well it appears I have taken a brief (3 month), unplanned hiatus from the blogging world!

Apparently blogs get pushed aside when you sell your house, move and tackle the first trimester of pregnancy #2.

First major cranio update is that our 6 month post op appointment with our plastic surgeon, Dr. Williams, has come and gone! 

It was pretty uneventful... which can be considered a good thing and a bad. Good news is he is continuing to heal fine and showing no negative side affects. Bad news is that I got the sense the plastic surgeon was hoping to see a more drastic change. Now I should clarify that he didn't say that specifically... that is just what my gut tells me.

We are supposed to see the plastic surgeon every 3 months. This was our 3rd post op visit (1 week, 3 month and 6 month.) He told me there was no reason to bring him in at 9 months and that we could wait another 6 months and see him at 1 year post op. Most people would probably take this as a good sign. Call me skeptical but I sensed that it was because he wasn't seeing enough progress. Specifically in head shape.

He reminded me, after voicing my concern about this head shape, that there are still a lot of variables at play. Mainly that all of the other sutures are (or should be) open and allowing expansion. His brain will also stop growing soon believe it or not. But his sutures will not fuse for a few more years and his face will continue to grow for many more. All of these things can affect the overall shape of his skull. So it is still early and it is still hard to predict exactly what our final outcome will be.

So we wait. I am anxious to approach the 1 year mark, or the cranioversary. Mainly because I adore his neurosurgeon and that will give us an excuse to see him. But also because there is the strong chance they will order another CT scan to check out what is going on inside. Don't get me wrong - the actual CT scan, and exposure to all those x-rays, does not excite me. Our first one was nothing short of torture. But the images they produce are outstanding. I am a visual person. I find myself massaging Finn's head and imagining what it looks like under all of that sun-kissed blonde hair he is sporting these days. So to be able to see it will be crazy. I will be sure to post those images if we get to that point.

The second big update, though not entirely cranio related, is that baby Mylod #2 will be joining us later this year. 

Finn holding up his siblings first picture in front of our new house.

We are so excited! And with that excitement comes fear. Often times I read about parents who struggle with the thought of having a 2nd or 3rd child because they don't want to risk having another cranio baby. Of course, we fear the same but neither Brian or I felt our family was complete so we'd have to take that gamble. We are hopeful that because Finn's condition wasn't related to a syndrome or genetic that the odds are in our favor that we will not have a 2nd cranio baby. But the fear and concern are there and after we heard that precious little heart beat at the 8 week OB visit, it was the first topic of discussion. Believe it or not, my OB had never heard the word craniosynostosis before. He was intrigued though! And also very compassionate. He also assured me that the perinatologist who I would be seeing would be all over it. 

I am 16 weeks now so a month has already passed since my 12 week visit. On the day of my first ultrasound I filled out the mounds of paper and answered all the questionnaires. The word "craniosynostosis" wasn't on any of those check lists. Thank goodness for that handy "other" line at the bottom of the form. I promptly filled out that my first born was a sagittal baby, diagnosed at 11 months. When I met with the perinatologist, who had heard of cranio before, he was even more compassionate than my OB.  He was sweet to say that at the point the baby looked "perfect" and we shouldn't unnecessarily worry. He did recommend additional ultrasounds for peace of mind though. Aside from just the 12 and 20 weeks that they recommend for healthy moms with routine pregnancies, I will likely get another at 30 weeks and then a possible 4th if anything look fishy.

Now the upside is that we'll know ahead of time. The downside is that there is nothing we can do about it in utero. We would be able to treat it sooner and maybe take a less invasive route should surgery be necessary. But there is still no answer as to what is causing it. If you recall, Finn was born at 41 weeks, 2 days. weighing a whopping 8lbs 12oz.  One of the theories out there about cranio is that it can be caused in utero if there is not enough space for the baby's head to grow. While he wasn't diagnosed until late in his first year, we don't actually know when Finn's suture fused. 

My OB has already discussed inducing me early but I don't know how I feel about that just yet. I think I would rather wait and see how the pregnancy progresses and make the call closer to my due date.

Here is one more recent visual update on Finn's head. His scar is barely noticeable except when he is in the bath. So I snapped this photo the other night with his cool hairdo. It has really gone from a thick, pink line to a thin, hairless one. 

We've had a great summer thus far. Finn, aptly named, is officially obsessed with the pool and is swimming like a fish! I am happy to be out of the woods in pregger land. I am blessed to have a beautiful new house to call home. (And space for baby #2) And I am excited to head to NY next week to see family and friends and watch my brother participate in his first full Ironman in Lake Placid, NY!! And I will definitely try to be better with updates as Baby 2 grows!!

5 Months Post Op

Wow! 5 months post op! How did that happen!? I guess time flies when you're chasing an 18 month old around... and trying to sell your house at the same time!! (Under contract - hallelujah!)

Brian and I went out of town this past weekend for a wedding and left Finn behind. I was sad to leave him for 2 whole days but it was a welcomed break. We are so fortunate to have met his wonderful sitter during our time at Children's Healthcare of Atlanta - Scottish Rite. Jennifer was his nurse after we were released from the PICU. She is such a blessing to us!! There is something very comforting about leaving your child with someone you know and trust. I didn't worry about him for a second... which is hard to do!!

(Added bonus - Jennifer and her husband Andy started a popcorn company so we get spoiled with delicious popcorn too!! http://cartwrightspopcorn.com/ )

I don't have any recent pictures but will post some from last month.

Before (L) - After (R)

Before (top) - After (bottom)

His scar is barely visible now. I have become more obsessed with feeling the holes on the left side of his heads. Initially I had a hard time touching the softs spots all together. But now I am used to it and love to see how the healing process is coming along!

Despite a potential milk allergy, his 18 month check up was great his pediatrician is very pleased with his progress as well!!

Happy Spring to you all!

3 Month Post-op Check Up

On Thursday, February 27th Finn and I went to see Dr. Williams (plastic surgeon) for his 3 month post op check up. My anxiety was not quite what it has been in the past but of course the worrying was there. Is he going to need another surgery? Is his skull healing too fast? Too slow? Unevenly? Are they not happy with the outcome?

I admit there are days when I don't see much of a difference at all. I wonder if the surgery made enough of an impact to justify what he went through. Then I imagine he is on a diet and since I see him every single day it is hard to see the gradual change. I HAVE to trust that the doctors did what needed to be done.

Well the report from Dr. Williams was good! Nothing extraordinary, nothing alarming. I guess that is something to be grateful for. It seems one side of his head is healing faster than the other. The soft spot on his left side is much more obvious to the touch than the right. Dr. W told me it was no reason to alarmed and that it wouldn't result in any asymmetry. His other sutures are still open like that of a normal toddler skull and thus they are allowing for even growth all around. His forehead sutures are also much less obvious than they were 3 months ago. By his next appointment they may even be gone! His next check up will be in another 3 months - May 22nd. 

Here is an updated picture of his scar during bath time. It is really quite difficult to see when his hair is dry. Dr. Williams was very pleased with it!! 

Here are a few others. Just can't handle how big his is and how independent he is becoming! 

Tomorrow's agenda - Haircut!

Thank you for continuing to check back for updates. We are blessed and relieved to only have to update this blog from time to time and pray that Finn maintains a "routine case."

"There is no normal life that is free of pain. It's the very wrestling with our problems that can be the impetus for our growth." - Mister Rogers 

Technology Changing the Way Doctors Operate

http://www.myfoxny.com/story/24803512/surgeons-reconstruct-babys-skull-with-3d-printing-technology

Surgeons reconstruct Long Island baby's skull with 3D printing technology

Posted: Feb 24, 2014 8:51 AM ESTUpdated: Feb 24, 2014 8:53 AM EST

 

Before and after models of Gabriel's skull (Associated Plastic Surgeons)

By FOX NEWS -

When baby Gabriel was born in August, his dad, Manuel Dela Cruz, said everything initially seemed fine with his new son. It wasn’t until a week after his birth that Gabriel’s parents thought their son’s forehead looked abnormal.

“We noticed something was wrong with him,” Dela Cruz, of East Quogue, N.Y., said  “His eye wasn’t the same, and his right forehead was more protruded than the other one.”

Worried for their son’s health, the new parents took Gabriel to a pediatrician, who diagnosed the newborn with unilateral coronal synostosis – also known as anterior plagiocephaly.  For babies with this condition, a growth plate fuses prematurely on one side of the skull, causing the forehead to become more and more distorted and form asymmetrically.

Although the side effects of plagiocephaly are mostly cosmetic, the deformity can grow significantly worse if left untreated – leading many parents to opt for reconstructive surgery.  Knowing what needed to be done, Dela Cruz said it was frightening to have their son undergo an operation at such a young age.

“You obviously fear the worse, especially because it was in the head,” Dela Cruz said. “Knowing he was going to be opened up…it was very scary on the part of the parent.”

In order to treat Gabriel, physicians at Stony Brook University decided to try a completely new kind of operation – one that would cut down on the time the infant spent in the operating room.

Through a collaboration with Medical Modeling Inc. in Golden, Colo., Dr. Michael Egnor and Dr. Elliot Duboys were able to virtually plan the entire surgery beforehand.  Additionally, the company created 3D printed before-and-after models of Gabriel’s skull for the surgeons, so they could accurately predict how the operation’s results would look.

“The first thing we do, after we make a diagnosis, is a CT scan of the baby’s head… and we sent the CT image to [Medical Modeling],” Egnor, director of pediatric neurosurgery at Stony Brook Children’s Hospital, told FoxNews.com. “Using a computer program, they simulated the baby’s skull with the symmetry and dimensions it should have.  Then the company manufactured these templates and sent them to us, so we had the exact measurements.”

Knowing exactly how the skull should look after the procedure, 6-month-old Gabriel was brought in for surgery and placed him under anesthesia.  In order to get to the deformed bone, the surgeons made an incision across the top of Gabriel’s forehead, exposing the entire front of the skull and eye sockets.

Through the use of a special saw, the surgeons removed four pieces of deformed bone and made special cuts in the skull to help reshape and restructure the baby’s head.  In an attempt to make the remodeling more precise, Egnor and Duboys utilized the 3D printed templates provided by Medical Modeling, which helped to highlight where the surgeons needed to make their incisions.

“They sent us cutting templates, which were pieces of 3D modeling that we were able to place on the child’s skull during surgery,” Duboys, associate professor of surgery  at Stony Brook Medicine, told FoxNews.com. “And then we just traced where the cuts should be on the skull, almost like a stencil… And then we know where to cut.”

Both Egnor and Duboys said the 3D modeling technology helped to cut down on the length of the procedure, which meant Gabriel spent far less time under anesthesia than during traditional surgery.  They hope more surgeons will utilize this 3D imaging and modeling to perform reconstructive surgeries in the future.

“I think it’s going to become, over time, acknowledged as the best way to do procedures of this nature,” Egnor said. “I was hopeful that this would work nicely, and it made a believer out of me.”

As for Gabriel, Dela Cruz said his son will still need to wear a helmet to reshape his forehead.  But overall, he responded extremely well to the surgery and his forehead is not as protruded as it once was.

“There are no side effects, and he’s a normal baby,” Dela Cruz said. “…Gabriel responded very good to the procedure, and three or four days after, he was joking and playing.  It was great seeing him that way.”

Read more: http://www.myfoxny.com/story/24803512/surgeons-reconstruct-babys-skull-with-3d-printing-technology#ixzz2uL46F0wR
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Article for my grade school newsletter

Here is an article that was recently published in my elementary school's alumni newsletter.

http://annunciationcrestwood.com/_pdf_documents/annunciation_newsletter_Feb_2014.pdf

I grew up in a small community in Yonkers, New York called Crestwood. My parents moved there before I was born and I lived in 3 houses before I was 5. Most kids in the neighborhood went to the same elementary school and church. I am still very good friends with a lot of the people I grew up with. So writing this piece and spreading awareness about cranio was very important to me.

*We are just over 3 months post op and Finn is doing well! Next week is his follow up with the plastic surgeon.

Today we would like to wish a very Happy Birthday to his uncle and namesake who is in heaven. We love you Chrissy!

Welcome to Holland

A fellow cranio mom from Atlanta posted this beautiful poem on Facebook. Unfortunately, she heard it at a funeral for a sweet baby girl who passed away due of a birth defect.

We are so grateful Finn's condition was fixable. While I have no idea what it is like to raise a child who has a permanent disability, there were days where I felt I could relate to this. Regardless, I think it is worth sharing :)

WELCOME TO HOLLAND
by Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out 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....and 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 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.