High-Risk Pregnancy

XP: Update on Baby Boy

Today was a LOOOOOONG day. Left house at 8:30, home around 4pm. 

The baby does have spina bifida. There are positives and negatives to his particular situation. He has a hole in his spinal column at the base, which is the best spot to have it, the lower the better. Also his hole has been closed over by skin, which is rare. This means his spine is protected from amniotic fluid. Both these things means this is a mild case. Bad news: they suspect nerves are fused to the base of his spine. Right now he is fine, great movement, brain looks good, bones look good etc. But as he grows he may not grow normally. They just don't know. 

Because his hole is covered they theorize no spinal fluid escaped which is why he passed the neural tube defect testing (AFP) in the 1st trimester screening process.

I had an amnio done today so they can check the amniotic fluid for a few things. I go next week for a fetal MRI. we also are trying to get in to meet a pediatric neursurgeon. Most babies with SP need surgery with 48 hours of birth to close the hole. Since his closed and protected we may not need surgery until he is a month or two old, which is better. But the big question is what the impact is of this possible nerve issue. The surgeon can tell us these things. 

We are drained. I barely slept last night. The amnio hurt so much. I feel a tad more hopeful but also worried what may occur as he grows in-utero.

I need lots of prayers and good wishes. This is going to be a long rough road. They still think a week 39 c section is fine. Apparently all SP babies are c section due to  spine. 

I really appreciate your prayers. My baby moves so much, he is moving all the time. I feel like he is telling me to hang in there. 
 
Thank you for thinking of us! 




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Re: XP: Update on Baby Boy

  • I'm so sorry you're going through this. It sounds like you have a spunky little guy in there, though. Hope you get the best outcome possible.
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  • Thank you for your update. I will be praying for you and your little boy. His little kicks are a reminder that no matter what is thrown your way he will be ok.. stay strong :
  • I'm glad you got more answers and will hopefully get some rest tonight. You and your LO will be in my prayers. I agree that he is letting you know he is strong and keep your chin up! 
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  • I had my first surgery at 2 months for the nerves being stuck to the spine as well. It's called a tethered spinal cord. I actually just had a tethered spinal cord release again 4 years ago. Anyway, as I said in the previous thread about this, if you have any questions, don't hesitate to ask. Every spina bifida patient is different but I have a lot of experience and insight. Best of luck!
  • I'm sorry you have such a rough road ahead of you. I will send lots of prayers for you and your baby boy!

     

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  • Sending you lots of thoughts and prayers. It seems you have a good dr/team taking care of you and your little one. Take time to acknowledge your feelings. DS was born with cleft lip and palate. Finding out during pregnancy gave us time to process his diagnosis and learn. Knowing in advance allowed us to enjoy his birth and be educated about his plan for care.
  • Lbear8Lbear8 member
    Continued thoughts and prayers your way! I'm glad you were able to get some clarity.
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  • Wow, what a lot for you to process right now.  It sounds like you have a lot of good things to focus on and a great team with a plan to monitor you both every step of the way. 
    I hope you can get some rest and continue to get more information and answers about your sweet boy!!

    Still thinking of you!
  • Inn2Inn2 member
    Thinking of you and your LO.  
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