I haven't posted an update in a while, I suppose one is due. I'll keep this as a thread for future updates
We're having a little boy!
Sadly, we learned he has spina bifida. It's been a whirlwind of reading online, Dr appointments, & updating friends & family. Asking for prayers
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We caught this very early, as we were wondering if his veins were okay after my blood clot issues earlier this year. We've been referred to a hospital in Houston for possible fetal surgery to correct what they can. We will likely be out of Alaska for a good while starting in Dec.
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Also, his feet are bent inward, clubbed. That can be corrected after birth. Thankfully the preliminary tests don't show any genetic issues and his heart looks great.
We've been feeling the love from everyone lately and thank you all. My mom's friend has donated miles for flights
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There are a lot of challenges ahead, and of course surgery comes with risks. Prayers are still greatly appreciated.
We're glad doctors finally realize we're not "ending this pregnancy" aka murdering our son. We're here to do everything to care for him. We love him.
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Thankfully the meningocele/myelomeningocele (I'm not sure which) is located really low on his back, which gives a better chance at walking. The doc said the swelling in his ventricles seems to have stabilized. With surgery there can be better brain development.
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We're very thankfully for recent advances in surgeries to treat this, and thankful for those who in the face of a scary diagnosis did not abort their babies, but helped in clinical trials to develop procedures that are now standard care. Save the little patients!
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One place we applied for temporary housing is full. Working on another application. Most charitable places that offer housing near medical centers seem to have a limit of 4 people which makes it hard for our large family. Please pray we get this sorted out.
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I'm not sure which one of you praying for us has the direct line to God (don't stop whoever you are!) but we now have a phone interview tomorrow with a place that has a 3 bedroom unit available. Big weight off my chest.
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Small update this morning but it's no longer preliminary results, all tests are back showing no genetic issues. Also, our background checks cleared and we were given the address of the house from the housing charity. So sounds like that's in order. Just waiting now.
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C-section scheduled for March 20th. Spine surgery 12 hours or so after birth. Sounds like we'll be in NICU for about 2 weeks afterwards. Really going to have to rely on family and friends to help with the other kids (who can't visit) and chickens and such.
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@SingForTheDay
So glad to hear there are options for treatment to help him! Thank God he is part of a family that will love and help him through these challenges.
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@liss_shrugged
Slightly terrifying to hear my wife is going to have a hip to hip incision, but yes we are very thankful for treatment options!
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@SingForTheDay
hello, congratulations on your sweet boy! I’m sure this diagnosis is leaving you with many questions and concerns. praying for you and your family. I have spina bifida and am happy to talk with you if that would be helpful 😊🙏🏻
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@frizzydizzyliz
I appreciate the offer! Thank you very much. I'm not sure I have any questions at this time, just praying things go well with surgery. But I'll sure keep you in mind.
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@BenGrimaldi
Thanks, Ben! It's a lot but we're staying positive and are excited about another baby boy.
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Didn't get the best images on the ultrasound today, but they did spot a bunch of hair on his head!
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