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my 2 month baby needs surgery on his skull..

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My almost 2 month son had to go to see neurology doctor I thought everything was going to be fine.. boy was I wrong.. she told me he had.. Sagiltal synostosis.. that means his soft spots closed up to soon.. so They r going to have to cut the bone on the top of his head out.. so that his head can grow normally.. if he doesn't get it done his head will grow front to back not side to side.. I am a single mom so all this is freaking me out.. he will have to be in the hospital and wear a helmet to protect his head for 4-5 months.. please some support ladies.. I am so scared


Hey We Had The Appointment With The Plastic Surgeon it went well me and my parents asked tons of questions she was great i really feel confident placing him in her care.. he is doing the non invasive route.. and he will be getting it done at 3 months so anytime after June 6th i will make the apt.. I am extremelyscared but ready for this to be all over with.. thank you so much all ur in site has helped me so much.. and i will update u when i get anymore information and I will send pics after its all said and done with... <3 Much Love Morgan & mason..

<3 Mason Lee Shanks.. 1st Son <3
by on May. 3, 2012 at 2:17 PM
Replies (11-20):
by on May. 3, 2012 at 3:10 PM
1 mom liked this

I was born with a brain tumor that was found at the age of 17. I had two operations to remove the tumor. Drs seem to believe that the younger a patient is, the greater the success. I know it sounds very scary with it being your child, but I think he should be ok, especially with MM to help him recover. I would also not give him too much information about the operation. If I could have had a choice as to when I had the operation/s, I would rather not have been aware of it. I have tried to say as little as possible to my Lit'l Guys about it- but DS1 has already noticed the scar/dent in my head. I guess your Little One might find out if there is scarring, but let him ask about it first.

Also, ask the dr how long before the operation you can nurse him and how long afterwards. I am sure the nursing will be comforting to him.

Let us know how it goes...

GL, Mama...

           Lilypie - (Sskr) 


              Lilypie - (Uloy)



Lilypie - (2dY4)

by on May. 3, 2012 at 3:11 PM
2 moms liked this
My son had the same synostosis. It'll be ok, mama. Hugs. Pm me if you want to ask any ?s
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by on May. 3, 2012 at 3:27 PM
He also had the surgery when he was 2 months old.
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by on May. 3, 2012 at 3:34 PM
Is he having the open/traditional surgery or the endoscopic surgery? If you're wary of an early surgery or the helmet, you can opt for the more traditional one performed when your baby is older.
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by on May. 3, 2012 at 3:39 PM
3 moms liked this

Wanted to chime in.  It was Oct. 6 when my son was diagnosed with the same fusion.  I will always remember that day because it was sooooo scary.  He was two months old also.  I have a lot of information that I can share with you but the most important is this: IT IS GOING TO BE OK.! Hard, but ok.

It is really good that he has been diagnosed this early.  It means that he can have the procedure done endoscopicly.  Find out if your nuerosurgeon plans on using this method because it is so less invasive.  If not, look around your area to see if there is someone who does.  It can only be done before four months.

My son was in the PICU for three days and on a regular recovery for two more.  He needed a blood transfusion but most babies who have the surgery do.  I wanted to touch on that because if you wanted to use your own blood it takes a couple weeks to process and you are on a time schedual. 

It was performed at a childrens hospital so they were up to date with breastfeeding and anesthesia guidelines, but here is a link to read up on for you.  

Also, they told me that they were going to need to give him formula so that they could monitor how much he was getting.  Not true.  We had the charge nurse come over and she agreed to weigh diaper output. 

YOU CAN NURSE YOUR BABY WHEN HE IS READY TO EAT!  Which might not be for awhile.  Bring a pump.  I went home with over 120 oz.  Remember to drink lots of water and grab an occasional snack so that you can keep your supply up for him.  I always had an Odwalla bar stashed in my pump bag.

As for the helmet, it is harder for you to get used to than him.  Soon it becomes another part of your baby and life.  We recently got my sons off and it was kind of weird when we all realized we actually missed that thing!

If you have questions please feel free to PM me.  I have been there and have done tons of reading and research.  My husband and I are also the people that our nuerosurgeon refers new patients with Craniosynestosis too for support so please don't hesitate if you want to chat. 

When it gets closer to surgery time get ahold of me too.  I can tell you everything that I wish someone had told me.

Stay strong.

oh and buy a binder.  you are going to need to keep track of alot.


by on May. 3, 2012 at 3:41 PM

Oh the link. duh

by on May. 3, 2012 at 3:49 PM
2 moms liked this

by Robin on May. 3, 2012 at 3:51 PM
So sry mama..pray hard mama. Youll get through it
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by on May. 3, 2012 at 3:53 PM
Idk how I'd get through that
Poor baby
I'll pray for y'all
Stay strong for him mamma the best you can and we'll stay strong for you
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by on May. 3, 2012 at 3:54 PM
I know its scary but im picking up happy thoughts i think you both will be fine? I know its surgry and scary but it sounds like after that he will be fine l. How does a baby soft spot close too fast? I wouldnt even know to check im sure the doc did.
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