Norah Maye Sireci

This is just an update on our baby GIRL!  Now 16 weeks along, I’m feeling fine, besides the obvious anxieties about the future.  But it has been a good week!  We got some news on Monday and now that family knows…the public can know too!  Our little Wiggles is a little girl and it is so much harder to avoid attachment when you know the gender and we can call her by a name other than Wiggles.  Our little Norah Maye…oh how you have changed our lives!

Below is an update on what we learned this week and some ways that you can join us in prayer.

  • We got genetic blood test results back yesterday.  The test came back
    NEGATIVE!  We were happy to hear that Norah Maye appears to have no genetic issues! We know there is still a chance that this could be a false negative…but we are hopeful that it was correct.  So what does this mean? It means that she just has Holoprosencephaly (HPE) which is still a fatal diagnosis, but not quite as severe as if there was genetic problems.
  • We have a general OB appointment with my doctor on September 9th at
    8:45 am.  We know at each of these appointments there is a chance that
    Norah will no longer have a heartbeat.  So pray for emotional preparation for whatever God’s will is.  If there is a heartbeat there is a possibility that more formal birth plans will begin to be made.  Pray for wisdom for us and for the team that will create this plan with us.
  • We have an appointment with the at risk pregnancy doctor on September 14th at 7:30 am. This is a very big and long appointment (about 2 hours)  We will have a full body ultrasound scan of the baby to check for other defects and facial abnormalities, a consultation with the doctor, and an amniocentesis.  This is just a scary appointment for me.  Pray for peace, and that we would see perfection in our child the way the Lord does.  I selfishly just want our baby to have two eyes…so I am praying specifically for that as babies with HPE sometimes do not.
  • I think at this point…with the genetic test coming back negative…it is
    still absolutely appropriate to pray for a miracle and full development of
    the brain to be seen on the 14th.

We are so grateful for the love, support, and prayers on the journey thus far!  THANK YOU! It isn’t easy…at all!  But we serve a great God who is laying the path for us!

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4 thoughts on “Norah Maye Sireci

  1. Hey to you 3. I am praying for Gods grace for u all. I have walked your path and my Grace is a Justin. You know him. Just hold on to Jesus. He loves u and is with you. Know my prayers are also with u,

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  2. My name is Michele Gardiner and I knew Johnathan as a young child in AK. We will be praying for you on this journey. It’s great to know Norah is perfect in God’s site!

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  3. praying that our God will continue to unite the 2 of you, with God’s peace and knowledge of His presence every minute – every day. love you 3!

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