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daniellelucille
09-13-2008, 08:47 AM
My name is Danielle, I am 22 and married to JR who is 27. We have two beautiful children together, Lucas who is 17 months old and Jocelyn who is 1 month old (and crazily enough we planned it that way). We are from Upper Michigan and moved to South Carolina in Februrary 2005. We like it here for the most part, but want to go back north eventually... thinking on Ohio.

Anywho... I had Jocelyn's 1 month appt Tuesday and it went like this:

I will start with the stats:

BIRTH:
Weight: 5 pounds 14 ounces
Length: 18"
Head Circ: 12.25"

1 MONTH:
Weight: 8 pounds 9 ounces
Length: 21.25"
Head Circ: 15.25"

She's growing really well.

She has a slight rash on her face that comes and goes. The doc wants me to put lotion on it 1-2 times a day. He gave it a name of some sort, but I forgot what he said it was. I think it started with an S... I dunno, that's not the important part though.

He didn't seem to think she had reflux, cause she isn't spitting up too much, and a few other reasonings... I forget... He thinks it's colic. I knew it was one of the two. He told me to warm up some regular 7up on the counter to room temp and until it's flat and give her 1oz around her fussy time. He said they give babies sugar for circumcisions and such to soothe them, and he recommended it for the colic. He also said the colic will probably get worse before it gets better too... but the 7up has worked WONDERS for her.

Here's the scary part. I have noticed her head is funny shaped... like not round, but growing front to back, her forehead coming out some... It's not hugely obvious at all, but I brought it up. He felt her bones in her head, was telling me there are like 5 plates in the head and such. Then he felt one and said it felt like it was fused together, when it shouldn't be. He asked if she was breech cause breech babies head's can do that. And she was... but not for that long. Anyways... the pediatrician is making her an appt with a neurosurgeon. He thinks they will need to do surgery to separate those plates so her head can grow right. I asked about the recovery on that and she may need a day or two in the hospital. I can't even believe this.

Jocelyn's appt with the neurosurgeon is on Friday, November 7th @ 1:15pm. The lady at the pediatrician's office said she faxed the records and doctor's notes over and they will get in touch with me if they feel she needs to be in sooner than that. (Which from my appt with the ped Tuesday I would think it would be sooner than that, but I dunno).

Any advice or anything about this would be wonderful. The sutures they are thinking are closed are towards the back of her head. There's a big ridged lump there, and her forehead seems a little further out than normal.

Here's a pic of my baby girl:
http://i170.photobucket.com/albums/u272/miller5456/2008-9%20SEPTEMBER/100_3731.jpg?t=1221309755

And one that you can see her forehead in:
http://i170.photobucket.com/albums/u272/miller5456/2008-9%20SEPTEMBER/100_3685.jpg?t=1221309865
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charliesmummy
09-13-2008, 08:56 AM
Hiya Danielle welcome to cranio kids, this is a fantastic site & im sure you will get lots of help from the wonderful people here. Your daughter & son are both gorgeous by the way, love the piccy of them both asleep in the car. I can deffinately see your daughters forehead bossing, i would say she has saggital cranio but as im a Metopic mummy myself im sure other mums on these boards will help out. Good luck with your appointment and welcome again x

Jenny
09-13-2008, 09:25 AM
Welcome Danielle! Were from Mich too! It sounds like the docs have you on the right path. For most parents, it's tough to even get their dr's to admit there might be something amiss. It's a long hard journey, but you'll find a lot of support here!

mattricia
09-13-2008, 09:36 AM
Hi Danielle. Welcome to CK. Your children are adorable. I love the pic of them sleeping in their carseats, all tuckered out. There is definitely something about car rides, isn't there?

I'm sorry that it looks like you're joining the craniojourney, but you've come to a wonderful place for information and emotional support. Your description of Jocelyn's skull sounds exactly like my Jack's at that age, and the following months until he had surgery. Elongated skull, "tall" forehead with bossing, and ridges on the top/back of his head...fusion of the sagittal suture. Also, i see it in her photo.

At Jack's one month check-up, his skull had grown two inches. The nurse measured twice, and the ped came in immediately and remeasured...ours never does that. (I replay that moment often, in my mind. It was our first inkling of anything out-of-the-ordinary...)

Please ask any questions you have. We're here for you.

Wyatt's Mom
09-13-2008, 10:12 AM
Welcome to craniokids. Your kids are adorable! I love the picture of them sleeping in the car.

I agree with Tricia, I think your daughter has Sagittal Cranio. Not to worry though, if she does there are a few different surgery options for you and I'm sure she will be just fine.

Try to get in touch with a few sagittal moms on here (I'm sure they will welcome you soon). There are two different surgeries, one is called CVR and is more invasive and is usually done when they are a bit older (like 8-10 months but can be done up to a year I believe) and one is done when they are younger and is less invasive. It is called endoscopic and they wear a helmet after to help with reshaping. Either way the outcome is awesome and your daughter's head will look great after.

So, welcome again. Oh, and you are not crazy. We planned for our kids to be close too. They are 15 months apart. It's all a blur eh? LOL

Amy K
09-13-2008, 12:11 PM
Hello and welcome! Your beautiful daughter has sagittal synostosis. You can go to my profile album and view my son's before and after pics as well as surgery pics. This is a tough ride, but our babies come throught it amazingly well!

amizzle
09-13-2008, 12:31 PM
hello.

we are also young parents, so i understand how scary this all is.

our son was sagittal and had surgery at 10 weeks old. We chose to do the endoscopic surgery and were THRILLED with the surgery and the results. Our boy is just out of helmet therapy and has a perfectly round head and little itty bitty scars.

hope we can help you through this. feel free to send me a private message anytime.

daniellelucille
09-13-2008, 01:25 PM
Just to add 2 more pics I just took:
http://i170.photobucket.com/albums/u272/miller5456/2008-9%20SEPTEMBER/100_3802.jpg?t=1221326732
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http://i170.photobucket.com/albums/u272/miller5456/2008-9%20SEPTEMBER/100_3803.jpg?t=1221326742
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Tawnia
09-13-2008, 01:32 PM
Your daughter is adorable! She definitely looks saggital though :) We have lots of "sadgy" babies on here :)

Monica
09-13-2008, 02:12 PM
Oh my, she is beautiful. I've written you in another one of your posts, but I just couldn't help but comment on that sweet sleeping baby!

Mother of boys
09-13-2008, 02:12 PM
Hi, Danielle. I would agree that she definitely looks saggital to me. Our son has saggital craniosynostosis. At his 2 month checkup, our pediatrician looked at his head and said to keep an eye on it, but don't worry. My husband did some research and ended up diagnosing it himself. He got in touch with Dr. Fearon in Texas, and we have surgery scheduled for less than 3 weeks from now. I know exactly how you are feeling. Finding out was devastating, but after "talking" with many moms on here, I am feeling better about things. Feel free to send me a PM anytime if you have more questions. I am sure your little girl will be just fine. It is good that this was discovered early.

Take care and stay strong (I know that is hard!).

Shar
09-13-2008, 03:37 PM
Just wanted to say, "Welcome!"

You kids are adorable! I am wondering if your pediatrician makes housecalls to Arizona ;o) He sounds like a keeper!

Bean
09-13-2008, 06:48 PM
Welcome - your kids are SO beautiful! It does look and sound as if your daughter has sagittal cranio. Her head looks JUST like my Jakeys did. It sounds like you are in really good hands.

Keep asking questions here - anything goes. This group of amazing people has helped me out so much over the last 5 months.

Good luck,
Christine

Elizabeth
09-13-2008, 10:02 PM
Welcome...your munchins are adorable! I am in love with both of them already.

I definitely think your little sweetie appears to have a sagittal head. Sounds like your pedi is right on top of it, though. Good for you!

We can't wait to get to know you better!

beccad
09-13-2008, 10:15 PM
I just wanted to say welcome to CK!! Your kiddos are just adorable. I'm sorry you are going through all of this. Just know that we are here for you and ask anything you need of us. I'll keep you in my prayers as you go for the appointments.

jumpingjacksmom
09-13-2008, 10:25 PM
Hi Danielle... wanted to add me welcome. My son Jack is a sagittal. Our pediatrician caught Jack's fusion at 3 months we had his surgery at month 4... He's our healthy fast moving 5 month old now and doing wonderful!

I'm sorry that your going down this crazy path, but we've been there and are there for you now. Please let me know if you have questions about anything. We've been there recently and know how it feels to be scared out of mind and confused and unsure and ready to go nuts and all this on top having a new baby! It's great that you've caught this early...

You're sweet girl will amaze you with how well she handles all this! God Bless!

Tamz
09-13-2008, 11:34 PM
Hi and welcome to CK I am a cranio adult I had my surgery many years ago i had multiple suture fusion,just wanted to say both your kiddos are adorable I love them sleeping in the car too sweet. good luck on your journey you will have plenty of support here as well. welcome to our "family"

Anna Webb
09-14-2008, 02:45 AM
hi there, beautiful children!! yes, definately saggital synostosis. our daughter lily has had surgery for sagital at age 18 months. i know this is all unknown but everything will work out for good, she is just lovely.
anna

daniellelucille
09-14-2008, 10:26 AM
Thanks everyone! I am SO happy to have found you!!! You will be seeing a lot of me around. Don't get sick of me too fast. :D

Annie
09-14-2008, 06:45 PM
Hi Danielle and welcome, your daughter is a beauty, it looks like Sagittal to me...but a CT scan would confirm...keep us posted on her progress and all.