What is Craniosynostosis and spring surgery

My son Weston has craniosynostosis of the right coronal fissure in his skull. Which means the fissure on the right side of his head is prematurely fused. A babies skull fissures are open to allow for head growth. Craniosynostosis can affect any of the skulls fissures. There can be a family link but it is often a random occurrence. If left untreated the fused fissures do not move as the head grows which will cause the head to become deformed.

We where lucky that we discovered his condition very early in his life., because it need to be corrected when the skull is growing, and the spring surgery has to be done when the baby is very young. In Weston's case four months old. The cut off age is different for each case. People often ask us how we discovered that Weston had this condition. Weston was a C section baby, so we were a little worried that his head was not round. His Daddy (Steve) noticed that one eyebrow was flat, and I noticed that one eye looked larger than the other. We asked our Pediatrician Dr Rodgers about it at our first appointment. He said it was most likely just from the birthing process, however that we would check if it looked like it had rounded out by our next appointment. I was having difficulty with breast feeding at first so I we were scheduled to come back the next week, to check to make sure Weston was thriving and I was scheduled to see a lactation specialist right before the pediatricians appointment. She also noticed that his head was still asymmetrical, she had noticed on the day of his birth, as did his Pediatrician but all where thinking that it was form being squished inside of me.

Because there had been no rounding out of Weston's eyebrow our pediatrician decided that it was time to see a specialist, at this time he was thinking that it could be something that could be fixed with a special kind of helmet, as he did not think it was Craniosynostosis because he could feel the fissures through Weston's skin, but with out CT scans and such there was no way of knowing. He sent us to a plastic surgeon named DR. Kilen who as soon as he saw Weston said that he thought it was Craniosynostosis because although he had a flat spot over his forehead his ears matched. He said if it was just misshapen from the birthing process his ear would of also been mashed back. He the explained a very scary sounding surgery, which was the traditional cranioplasty. He was very good at answering all our questions. He referred us to Dr Glazier a neurosurgeon ( who would of thought I would ever have to know a plastic surgeon or a neurosurgeons name) Who gratefully told us that Weston was a candidate for Spring Assisted Surgery which is why less invasive and also lessens the chance of follow up surgeries. Some thing that is quite the norm with the traditional surgery.

The prep in the months before the surgery was kind of cool they put this little sock on his head and taped a little box to that, then using a laser scanner (Like a bar code reader) they scanned his head from all sided as the did a 3-D animation of his head popped up on the screen and the tech could move it any way. Very cool. Then from his CT scan the made an actual 3-D model of his head, which the used to make the surgical springs. When it is all over with I am asking for the skull model after all I know our insurance paid for it, and being the boy that he is he will probably like to see it when he is older.

Spring-assisted cranioplasty they cut a centimeter of his skull out over the effected fissure and use medical springs to help the skull move to the correct position. In four months the springs will come out, and his new “fissure” will close along with the rest in his head, and his head should be nice and round. He will have a big zig zag scar but it will be covered with his hair, when he gits hair that is :) This condition in no way affects his cognitive development.

Weston's craniosynostosis surgery

Weston had his surgery on Friday, It went well but he was not a happy baby after. His IV got out of the vein somehow filled his arm up with fluids until it was tight and heard. :( , He got a fever and had a lot of swelling. His eyes swelled shut at one point. He also had some very painful gas. (poor little tooter) form the anesthesia. His surgery is on the side of the head so he is not allowed to lie on his back or right side. only on his left. He still has one eye mostly swelled shut, but he is feeling better, and the fever finally broke.
They sent us home with his protective helmet. I did not think it would be so big! poor little guy is kind of new at holding his head up now he has this big ol thing to hold up as well.
They’re where two other babies on the 8th floor that where crano kids. They were lucky to have almost no swelling and where up and playing in no time. I was happy for them but it made me feel worse for my little guy.
Hopefully the worst is behind us now, as we got our first big smile today. He is a very smiley guy and we sure did miss them. I am taking lots of photos to post on cappskids.org since he is bald, it will be easy to see the improvements in his melon:) I know that it was comforting to me to see before and after photos. I will also add some photos one here.

I WANT

My mind is like a loto machine with ping pong balls bouncing inside. Oh the things I need and want to do! how to start and how to stay on task has always eluded me. I am sure this is a common theme for many a creative person add motherhood into the mix and my ping pongs balls are really just a flying!

I am just going to write what is in my head so this is just a little exercise in free writing something I do now and then to try and focus.
Things I want and/or need to do. The things that cause guilt in my worried bouncy brain.

I need to clean this house I mean really clean with nothing but seasonal stuff in boxes! This task is so overwhelming that it makes my heart race. It would be more than lovely to have an organized home with places for everything and my art on display. I want the tables in our house to be clean and the dressers and the floor and everything! I want a good looking home that is a pleasure to have guest in. I has struggled with this my whole life. If I could change one thing about it it would be this I would be an organized neat person. It is the place that I most lack.

I want to finish my baby quilt, quilted purses, mosaic table, Ruthies mosaic cat and the sculptcher of Magic. Other projects I need to finish hanging the wall jewelry box, I got months and months ago and getting my jewelery off the dresser: also finish putting my silver charms in a shadow box and hang that on display also. It would be so nice to get all the wedding pictures in an album. I want to take photots of all my work and make a art book out of it. I would love to have a studio space again in which to do my thing. I am scattered here and there, but I know that is not the reason I am not completing my projects of stating new ones it is not the space but the mind that is causing my woes.

I want to get myself to the gym to swim laps and zumba, what is keeping me away! I want to make freeze ahead meals so that I can always have things on hand to make for dinner. For the last three years I have wanted to take riding lessons to brush up on my riding skills. How will I work this out. I would like to trail ride again. I want to find activities that my husband and I can do together, and then I want to do them.

I want to better use my God given talents.

I want to practice what I preach and be an example of togetherness for my son. I want to write things down in his baby book and actually print out some pictures. I don't want to be a scatterebrain where he is concered!

I WANT to stop dwelling all of this . I need to dewll on the light in my life for it is wonderus everything else will work it's way out I just have to make one ping pong ball of thought make its way into the hopper and work on that.

clover

The sight of red clover bouncing its happy little heads along the roadside is something that will always bring a smile to my face. It is like a promise of good times to come. Spring is here when they line the streets. I love them, and wonder how many people don’t seem them or if they do see them only see weeds. Every time I notice something little and mostly unseen like red clover or trees who’s silhouettes look like dragons in the dusk I am always grateful for my artist eye that sees such things.
When I see the clover along highway 17 A on the way into town makes recall the town in Michigan that had planted flowers along the road for the whole town. It was beautiful and it made the town seem proud. For reasons I am not sure of, it seems important for me to record my love of red clover.

Easter

Today is Easter and we went to church with my Mom. They had a little musical drama which was nice because the church was dark and cold and there was lots of singing. Weston slept through it all which is a good thing for a 7 week old. After church we went to eat. You know the normal everybody every place story.

This morning I woke up in a little mood. I just feel put out because tomorrow is the day I have to had my baby off to someone. I know Renee will do a wonderful job and I am thankful that he will not have to go into day care, but still. I was also in a mood because I went to bed worrying about how Steve and I seem to be running in our own little circles trying to get things done. I was bummed because it is very important to stay connected to my husband. I love him and miss him. Well guess what was waiting for me in the baby's crib this morning a big ol Easter basket. As hard as he as been busting his but to fix my Moms AC , not getting home until late and all. He still stopped and got me cards (one from Weston) and a basket of goodies. He is a very good husband. He always seems to know when I need a little pick me up.

Got to love him and I DO


Happy Easter all

Going back

The time I knew would come too soon has. Today is Saturday the day before Easter and on Monday I have to be back at work. There is six million things I need to do but I don't want to do any of them. I did make myself pack the sitters box this morning and yesterday I spent time shopping for baby things for the sitters house, but mostly I just sit on this damn computer researching things that I want to make for me and the baby. Trying to figure out when I will have the time all the while knowing I would have plenty of time if I just get off this damn computer. I know I am just avoiding because I am sad and because I am easily distracted.

I am also lonely as Steve is at my Mom's working on the AC he was there all last weekend as well. I read in all theses magazines how it is so important to have couple time, but I wonder how we will pull it off. I know I can always find the time but Steve has a harder time letting things that need to get done go. Of course he could not let the AC go as it will be way hot really soon and mom needs an AC. Of course being the worrier that I am I worry that there will never be us time.

Speaking of time I am also trying to find how to have some me time. Of course I never feel like I do not have time as I make it a priority. I always find time to read , watch tv or sit on the computer, but I am talking away from home time. I rejoined the Y and they have child care so that is not the issue it is that the classes I want to take are at night and I live so far out that I would have to drive back into town. But no matter I can still swim and work on the tread mill. I think if I go into town two nights a week that will be ok, if not maybe one. If gas prices stay low it will be ok.

On bed rest Dec. 8 2008

Dec 5 2008
As you all know I am on bed rest and at first it was very hard and poor Steve received many a teary panicked depressed calls at work. Of course the hormones did not help. I was not worried about my health or the babies, as most people assume. Now don't get me wrong of course I have the normal mom to be worries, but after the amino and all the many checks I have because of the complication the baby is always healthy and developing as a baby should.
Bed rest is hard on me and I guess many people is that it is lonely, there is money and insurance worries because of missing work and feeling guilty because I am not able to do any thing like cook, clean, shop, take care or the horses, laundry or doing any thing to get ready for the baby and worrying that Steve would become resentful because of all the extra required of him. I also don't like that I am getting so out of shape! Not that I was in good shape but I was ok, by the time this is over I will just be a big blob of jello! I also miss being out and about pregnant! I like all the comments people make and being pregnant is much better than being fat!! Everyone tells you how cute you are all the time. I love that! I also have to keep in touch with school and my substitute so she knows what to do.

My biggest worries at this time far as the pregnancy goes are that I am not gaining weight. I always ask and they always say all is fine. Of course it looks like I am gaining a ton of weight but it is mostly baby, I estimate that I have only gained about 12 or so pounds so far. It looks and feels like a lot more but that is what the scale says. My Dr told me that I would probably not gain too much weight with this pregnancy because I started out over weight So that is a good thing because 10 of the 12 pounds I gained in the 1st trimester, and I thought oh I am going to be 250 before this is all over. I know now I will gain more because this is the time of big baby growth.
I am also now starting to worry about the actual birth process. Because of the complication the Dr has been getting me used to the idea of a c section. Well I am used to that idea, seems a lot easier, but now it seems that the complication which is Placenta Prvia is now correcting itself so now I have to think about labor and delivery.

So what do I do on bed rest everyday? Well I am on modified bed rest so I can sit up and prop up, I am not aloud to stand too much or lift any thing. I should only sit up for two hours at a time and then lie down or rest propping up. I am working on learning to quilt. I bought a baby quilt kit (all the fabric and the directions), and a new sewing machine. (Which I paid for by not driving for a month, which in my truck saved me over 400 in gas money). I have not started the baby quilt yet. I am afraid I am going to mess it up, s I been practicing on a small Christmas wall hanging, and some cat appliqué pillows for the babies room. So I spend some of my sitting up time working on that. I also bought some books on quilting which I read during down time. I also spend too much time on line! But lately that has been cut down because of backaches, It seems moving the mouse is too much for my jello muscles. I try not to watch too much TV until evening time. Some times when I am feeling bad however I will do a marathon TV day. Other reading I have been doing is on cooking for once a month. I bought a cookbook (not the greatest) on how to shop and organize to cook all day one day a month for the whole month. I love cooking but there is just not always time to come up with a lot of different things after work so this is really interesting to me. I have figured out how I can cook some nights with out standing too much. The crock pot is great and sometimes I can sit and assemble like when I made a bunch of pork tamales.