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  1. #1
    Surgery date 6.3.10 Sam's Mom Sam's Mom's Avatar
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    Default New Here

    Hi,
    I am new here but I have been 'lurking' the past few weeks. Here is *the beginning* of our story:
    My son, Samuel was born via urgent C-section on 2/7/10, due to breech presentation. My OB/GYN immediately suspected craniosynostosis and brought it to our attention later that day (after talking with the pediatrician). A head ultrasound was ordered to rule out hydrocephalus (it was negative). The rest of our hospital stay is such a blur. We cried, and prayed, and cried some more. It was truly the best and worst few days of our lives.

    We are very blessed to have such a wonderful OB/GYN. I have always known that he is excellent, but now I am pretty convinced that he is a saint. When we left the hospital, we had already spoken to a geneticist and had an appointment set up with a neurosurgeon, all courtesy of our OB.

    By the way, it appears that our son has saggital synostosis.

    We see the neurosurgeon next week (March 2). We are anxiously awaiting that appointment and the NS's recommendations. I am sure this will be the first of many postings/updates. Any advice or words of encouragement are very much appreciated.

  2. #2
    Alex's mama *jules* is on a distinguished road *jules*'s Avatar
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    It's wonderful to meet you. I only wish it could be under better circumstances :)

    Congratulations on your new baby Sam. I'm not very familiar with sagittal synostosis (my son was metopic), but many of our moms are. I'm sure they'll be on to welcome you asap! In the meantime, I'd be happy to help answer any questions you have that aren't suture specific.

    This site is amazing (as I'm sure you've noticed if you've been "lurking", lol) and the ladies are all very knowledgeable and supportive. You're in great hands here!

    Best of luck at your NS appt. I don't know if you're already aware, but there is a thread with questions to ask in the testing and surgery forum.
    Julie
    mom of two boys
    Zachary Joseph Marquez 9/4/02 - no cranio
    Alexander Michael Marquez 9/2/08 - metopic cranio
    surgery 5/15/09 with Dr. Fearon & Dr. Sacco

    http://www.caringbridge.org/visit/alexmarquez

  3. #3
    audra15 is on a distinguished road audra15's Avatar
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    Congratulations on your new baby boy!
    It must be so hard to go through this from day 1 but thankfully it is a condition that can be fixed. My daughter was sagittal too. She was officially diagnosed at 4 months and had surgery at 4 1/2 months. We just had our 4 month post-op check and she's doing wonderfully. Just remember that things will get better and easier. It's impossible not to worry but don't forget to enjoy this time with your little guy too.

    Good luck with your appointment. Let us know if you have any questions.
    Beth
    Kyra Rose - born 5/25/09
    sagittal surgery -10/14/09 at CHOP

  4. #4
    Momof2Boys is just starting out Momof2Boys's Avatar
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    Welcome and congrats on your baby! I know with alot of unexpected doctor appointments ahead, things can be so emotional but take each day by day. They grow up so fast and you want to enjoy these moments.
    That is awesome that your OB/GYN was the one to get the ball rolling. Too many doctors really do not have much knowledge of cranio. For your first appointment since you may want to write down your questions prior. It can be overwhelming once the NS starts talking and you want to make sure you leave with all your questions answered. Good luck with the appointment and I am glad you found us here. It is an amazing support.
    Jamie

    Mom of 2 wonderful boys! ;)
    Wife to hubby that survived testicular cancer 2009
    Jacob - 6 years old
    Justin - 3 years old~ Right Lambdoid synostosis/
    Surgery 10/22/07 , sleep apnea, multiple food allergies, acid reflux, low muscle tone, pectus, asthma, and chiari malformation secondary to cranio.

    Faith, Hope and Love

    Justin's Story
    www.caringbridge.org/visit/justinjones

  5. #5
    fitmomof2ae will become famous soon enough fitmomof2ae's Avatar
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    Welcome to CK! Congrats on the birth of Sam! He is precious!!! I'm sorry to hear he may have sagittal synostosis. My son was born with it too! However, we didn't find out until 9 months! It was discovered by our pediatrician. There are pros and cons to finding out right away.

    I'm so pleased to hear that your OB discovered it. It's great that he coordinated everything for you. There is enough to worry about with a newborn... And...sometimes trying to get Dr appts scheduled can be the hardest part. Many people have to wait a long time to see the NS. It's great that you'll be able to get some answers quickly. (Although, I know March 2 feels like it's very far away right now. )

    I'm glad you decided to join CK. I think the others gave great advice. The next several months will be very busy. Remember to enjoy every moment with Sam. I look forward to getting to know you and Sam!


    Sagittal surgery - 02/26/2009

    Second surgery suggested to correct a bump on the head and fill in soft spots.

  6. #6
    MBSzafranski MBSzafranski's Avatar
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    Welcome! I am sorry you are going through this, but this is an awesome support system! I am just a little further into this journey than you. My son is having surgery on 3/3.

    Please feel free to PM me if you have any questions. I think you are lucky to get an early diagnosis. Depending on the severity, you could have the choice of 2 different procedures. We just made our decision last week after thoroughly exploring both options. Feel free to check out my blog if you want to know more about our meetings and doctors.

    I know how anxious you must feel about meeting the neurosurgeon. It will help so much to get some questions answered, I am sure! As the other moms have said, enjoy your baby!! Know that you have found a great place for support!
    Maggie Szafranski
    Tulsa, OK

    mom of:
    Ben- born 11/24/2009 - Sagittal.
    *Surgery w/ Dr. Genecov 3/3/10*
    *Helmet Therapy 3/19/10 until 7/22/10*
    Luke- born 10/11/2007
    Jack- born 6/26/06



    www.bensheadblog.blogspot.com

  7. #7
    joshmummy joshmummy's Avatar
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    Hi and welcome to CK, congratulations on the birth of your little baby son sam. so sorry this has hit you from day 1. Our story started when Josh was 10 days old and that was bad enough. keep us posted on your appointment. you will get through this, we are all hear for you night and day xxxxx
    Heidi-wife to Chris,
    mummy to
    Amara 12yrs- no cranio
    Romany 8 yrs- no cranio
    Joshua 4 yrs- sagittal-surgery at Birminghams childrens hospital in 2007
    2nd opinion with Oxford feb 2011, recommended no surgery but wait and see

  8. #8
    Lovin' my Little Liam! aembuff aembuff's Avatar
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    Welcome! We are almost a year out from our surgery now and I can tell you, you will all be great! It is scary right now and hard to be calm and have faith in anything, learning as much as you can will help you to be prepared and calm and know that it will all turn out ok. We are sagittal too, my son and my husband.. so I have seen baby and recovery and grown up awesome hot man... cranio is scary but when you are a year past you'll be so proud of your whole family! My husband trimmed our babies hair today and I can tell you I love that scar! It is amazing and so are they.

    So the thing to know is they recover fast from surgery, they grow up tough, smart, athletic, and pretty darn good looking too! and no one would ever know my husband ever had an abnormal head shape, and his scar never bothered him ever... and I liked it about him when I first discovered it... cool story having surgery as an infant.... little did I know!

    Hugs!!!
    Amy
    Wife to Ryan (Sagittal, surgery @ 6mos. 1977)
    mother to
    Dane Alexander (8-16-03)
    Halle Corinne (3-19-06)
    Liam Knight (12-06-08) Sagittal surgery with Dr. Monica Wehby in Portland Oregon 3-16-09

  9. #9
    Sawyer's_Mom Sawyer's_Mom's Avatar
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    Hi and welcome. Congrats on your new little one! He is precious. I am so sorry you had to find us this way, but you have found a great place for support and information. This is a scary ride and I feel for you that you have to start it so soon. We have not been through our surgery yet, but the ladies on here have been so reassuring. Good luck at your appt and keep us posted! Enjoy that little guy, he's a treasure! : )
    Amanda



    Mom to 3 boys
    Hayden - 1/8/05 - no cranio
    Mason - 3/15/07 - no cranio
    Sawyer - 9/15/09 - diagnosed as trigonocephaly secondary to metopic craniosynostosis 2/12/10
    Surgery 7/16/10 with Dr. Fearon & Dr. Sacco at Medical City Hospital in Dallas, TX.
    Loving life on the other side!!

  10. #10
    Brandon's mommy Gretchen Gretchen's Avatar
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    Welcome! This is the crazy cranio journey but you have come to the right place! Like all the other women on here I am here to help, no question is too silly. Sam is a cutie tootie!
    Gretchen mommy to Andrew Charles 4/25/07, Brandon Danger (bicoronal synostosis) 7/12/09
    CVR/FOA done 2/5/10 - Dr. Scott Elton and Dr. Rodney Schmelzer of Banner Pediatric Spec.
    Cardons Childrens Center- Mesa, AZ
    www.crazylongtins.blogspot.com
    Hunter 9/9/99
    Brooke 11 6/6/98

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