Tyler&Jakob's story (saggital Babies)

[Holly]

Our story begins with Tyler. Tyler was born 2 days before his due date. After 2 hours of pushing out came my beautiful baby boy sunnyside up at 9lbs. 1oz. and 21 1/2 in.'s long with a mega cone head. His head had a huge hematoma. It jiggled like jello. The doctors saidthe swelling would go down which it did a few weeks later but alot of it got absorbed in his face so he was black and blue. I noticed he always would have his head completly to the side in his carseat and it seemed narrow so at Tylers 2 month checkup I told his peditrician I thought his head was a little weird. She examined him then droped the C bomb. I had never heard of craniosynotosis being a new mom with hormone levels up and down all I could do was cry. My poor baby. She set us up with a CT scan and a referrel to the cranio team. The CT reveled saggital synotosis. After that was when the doctor appointments began. They were 3 hours away. Tyler had surgery at 6 months old everything went great. They did the cranioatomy and he had a molding helmet for 6 months. But he is now 2 1/2 and still has a prominent forhead which I guess hes suppose to "grow into it". He has no learning, seeing or hearing disibillities. Tyler does have a slight ridge again but the NS and PS aren't to concerned. Now for Jakob.
Jakob was a week past due date. I had to be induced. So on March 15th, 2007 I delivered a 9lb. 7oz. baby boy sunnyside up again. (it kills the ole tail bone) I knew right away that he's got the same thing. My midwife agreed. The peditrician on call ordered an xray on his head and an eco on his heart. After those were done she came back with the results she said I got good news and bad news. Good news no cranio. bad news he has a hole in his heart and his aortic valve has 2 flaps instead of 3. There go's those hormone levels again. I was beside myself. Well we went home 24 hours after he was born. They wanted to see him at the peditrcians office a couple days later because he was jaundice. This was a different ped. I told her I still don't think his heads right. "Oh its fine" and that I was just paranoid because I already have a son with it. At 2 weeks Jakob had an appointment with our reguler ped. the one that discovered Tylers head. So I was kind of releived thinking we would get to the bottom of this. She told us she seen the xrays and it doesn't show cranio. She could move the plates in the back of his head. She also said he probably had that similer shape to Tylers because they both came out sunnyside up so a fuller face and narrow back of head. I somewhat felt better and decided since the surgens don't do the surgery till 6 months that I would wait intill his 2 month checkup intill I pushed anymore since thats when tylers became obvious. Meanwhile we had a checkup for tyler with the NS's practioner. When she was done with Tyler I asked do you think you could give me an opinion on Jakobs head she felt it and told me that its very rare for this to happen twice in one family.GRRRR. So here we are at 2 month checkup with reg. ped. Head shape hasn't improved. She said well maybe we should do a CT scan. Sure enough a mothers instinct. Sagittal cranio. So we got going on the surgen visits. Oh, at around 4 months we had our appointment with the cradiologist and did an hour long ultrasound. And discovered the hole has closed. And that here is no leakage or blockage with the flaps on his aortic valve so that shouldn't be a problem. We just have to come back for yearly exams. Jakob was scheduled for surgery for Sept. 27th, 2007 at 6 months old. Everything went good we was alot more swollen but I think the drain didnt work that they put in because it never filled with blood like tylers drain did. and his face was alot more black and blue. Jakob currently has a molding helmet its different then Tylers I think its kinda ugly and uncomfortable. But both my boys are doing great. Sorry this story was so long and excuse my spelling.

Tylers pictures

before surgery
http://a658.ac-images.myspacecdn.com/images01/8/m_c6afa4f40d770ce822dedb71d994e411.jpghttp://a389.ac-images.myspacecdn.com/images01/43/m_67b389ea7667f89b009b0629875cbdb4.jpghttp://a818.ac-images.myspacecdn.com/images01/112/m_702be832f5943562028ea252bb2ffaf9.jpg

2 weeks post opp
http://a736.ac-images.myspacecdn.com/images01/97/m_21a714c67bc3715c35c7d98826a70b6f.jpghttp://a405.ac-images.myspacecdn.com/images01/115/m_492ebe96288f32c2f019fbba89dfda7c.jpg

3 months post opp
http://a662.ac-images.myspacecdn.com/images01/97/m_38059d683c2324de806eb7e89cca0705.jpghttp://a259.ac-images.myspacecdn.com/images01/93/m_7b742eb1203ec22be5a7d58bfe4078d2.jpg

6 months post opp
http://a709.ac-images.myspacecdn.com/images01/65/m_342fcca0b2189c62ff9f72ec486de8a4.jpghttp://a32.ac-images.myspacecdn.com/images01/127/m_ecbaec5294b9a85a12e270b56fafd2e7.jpg

1 1/2 years post opp 2 years post opp
http://a397.ac-images.myspacecdn.com/images01/113/m_a30c0028b715acc726842b4a1ce8fbc4.jpghttp://a372.ac-images.myspacecdn.com/images01/98/m_c796fa9b38668e0613a5b059e949c863.jpg


Jakobs pictures

3 months old
http://a5.ac-images.myspacecdn.com/images01/110/m_27e80ddcd3628800e972d5c0df33ec0c.jpg

before surgery
http://a676.ac-images.myspacecdn.com/images01/117/m_ed61bc5165b34950ac8f850490ff61a3.jpghttp://a624.ac-images.myspacecdn.com/images01/56/m_cdee5bc0ee176ee4dd49875f9778d9ef.jpghttp://a385.ac-images.myspacecdn.com/images01/50/m_873de1a68abba03d6612bf06405f2110.jpg

1 day post op 2 days post op 3 days post op I can see again!
http://a301.ac-images.myspacecdn.com/images01/2/m_f3285bffb0d86b3857ed392ff67add24.jpghttp://a393.ac-images.myspacecdn.com/images01/17/m_0073c5b64d380fd97fd82655ec5a0de8.jpghttp://a703.ac-images.myspacecdn.com/images01/26/m_62f8d1a6df63d37351d77ae625853be6.jpg


1 month post op
http://a397.ac-images.myspacecdn.com/images01/56/m_17f7ef891e6c868918df61350901cacc.jpghttp://a383.ac-images.myspacecdn.com/images01/94/m_f7f1f9162480b32011b9e5f5805e2ede.jpghttp://a574.ac-images.myspacecdn.com/images01/125/m_0a3293c606162bd5c1312dab15e93cf5.jpg

Jakes helmet
http://a723.ac-images.myspacecdn.com/images01/62/m_afb1a9f7e4c9ad087d591f4a967dd49a.jpg

[Elizabeth]

What cuties! Thank you so much for sharing your story!

Elizabeth

[jenniferann75]

Holly, thank you for sharing your story. Mother's intuition is just amazing. Over and over again, we hear the same thing - I knew something was wrong but the doctors don't agree. Thank God that us mom's push for our children.

[charliesmummy]

Thank you for sharing, your boys are both gorgeous x

[mrs j]

I love the pic of them both in their pjs together, thanks for sharing your story.xx

[sarahob]

Thank you for sharing your story. Reading other people's stories really helped me when I first got Gavin's diagnosis and I'm sure people will really appreciate you sharing your experience. I can't even imagine the strength it must have taken to go through this twice. Your boys are absolutely adorable!