5.12.14 Here is what we know…

Saturday marked 20 weeks into our pregnancy.  Two weeks ago, at our routine anatomy scan we learned more than what we had prepared ourselves for, and these two weeks have been filled with up’s and down’s.  We want to share this information openly for many reasons- most importantly because at this very moment I need to let this out.  I need to remember these moments- even the not-so-great ones, because this journey will impact the rest of our lives.  We also want our family and friends to have as much information as we can give them, so that I don’t have to retell the information time after time.  We are hoping that this space can be a place for hope, and love, and prayers.  Because we need them all.

10361339_10152407386393529_343625363802130902_nToday we are heading to our MFM specialist, because we have opted for non-invasive testing.  The MaterniT21 test will use my blood to detect fetal chromosomal abnormalities, and we should know the results in about a week.

Lets rewind a bit.

At our regular ultrasound at 18 weeks, we were told that our baby was showing both soft and hard markers for chromosomal abnormalities.  (“Markers” are physical deviations from a “normal” scan.  One soft marker alone does not usually mean much- but where multiple are found concerns are raised.)  Baby Maxey was thought t0 have a cleft lip, a small calcium spot on his heart, and a missing right hand.  Yes, that’s a lot to absorb.  Our doctor could not tell us much more than that, besides that these markers really did not look like Down Syndrome, but set us up with a maternal-fetal medicine specialist who would be able to do a more in-depth ultrasound and hopefully get a better idea as to what was going on.  (Lets pause here for a second.  When I say that these markers do not look like Down Syndrome, please understand that this was not “good news”.  We would gladly take a baby with Down’s and not bat an eye.  My heart was not sinking because of the news of the physical abnormalities, but instead the idea that this baby may carry something much, much worse.  Something that could prevent me from carrying him to term, or take his life shortly after.)

We left that day feeling discouraged.  Okay thats definately an understatement.  I cried for two days.  We recieved countless text messages, facebook messages and phone calls that gave us more hope than I can explain.  They reminded us that our God is good. 

That Friday morning we walked into the specialist office with knot-filled stomachs, and sat through a hour long ultrasound.  After the ultrasound we were moved to a “consultation room” while the specialist reviewed our ultrasound.  (This is a sterile room with fake flowers and tissue boxes within your reach regardless of where you are sitting.  You quickly get the feeling that this is not a great room to be in.  Sweaty palms, yes. )

We didn’t recieve much news, just confirmation that yes, things did not look good.  A double cleft, missing hand, extra finger on the left hand, and now- ambiguous genitalia.  (I still think baby is a boy, and the blood test will tell us gender so when we get results we will know for certain.)  They could not get an image of exactly what they were looking for within the heart, so that will be the focus at our next ultrasound in a few weeks.  The specialist agreed that this does not look like Down Syndrome, and that if it weren’t for the extra finger it would look much like Amniotic Band Syndrome.  It also looks a lot like Trisomy 13.

Our options were the following: termination, amniocentesis and a non-invasive blood test.  We quickly ruled out the first option, and decided to think on the other two for a few days.  Amniocentesis involves a giant needle going into your belly, drawing fluid directly from your amniotic sac.  (Feeling faint? Me too.)  It carries small risks to the baby, but tests for a much more broad spectrum of abnormalities.  Honestly, my needle fear wasn’t what shied me away from this option.  (Pregnancy in crisis gives you a strange armor- I knew that if I needed to do this for the baby, I could.)  We decided together that it was just more information than we need.   The blood test is non-invasive and holds no threats to the baby.  It will confirm gender, and test for the three most common abnormalities: Trisomy 21 (Down’s Syndrome), Trisomy 13, and Trisomy 18.  Trisomy 13 & 18 are considered fatal.

We trust that this test will give us all of the information we need.  This baby is very much alive- kicking and thriving in me, and as long as he is willing to fight, so are we.

I have never in my life asked for people’s prayers, because quite honestly I always looked at other people’s needs and decided that they were greater than mine.  But this time I am asking, because it is not about me.  It’s about Him.

So grateful for your love and support,




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29 Responses to 5.12.14 Here is what we know…

  1. Shelley says:

    Thank you for sharing from your heart. There are no words, a few tears as I read and continued prayers. Love to all.

  2. Patricia Triplett says:

    Sending hope and prayers and love your way!

  3. Frances says:

    I will certainly pray for you, your husband and your wee baby.

  4. Teresa Schalosi says:

    Thoughts and Prayers for faith, hope, strength and love from our family to yours!

  5. Amber says:

    Thank you for sharing your story. Thoughts and prayers to you and your
    Family during this difficult season of your life. Trust in God
    And believe he has a plan

  6. Linda Owens says:

    Love to you Shannon and your family. I will be praying every day the God gives you strength and comfort, and of course that the outcome is better than your worst fears. Thinking of you. God Bless!

  7. Karen Ziakam says:

    Shannon… Keeping you in my thoughts & prayers honey. Be strong and know that God does hear our prayers!!!

  8. Jamie says:

    Praying for your family!

  9. Wendy says:

    Keeping you in thought and prayer.

  10. Joyce Profit says:

    My heart goes out to your family and I will keep you and your precious baby in my prayers. Praying for a miracle for all of you. God has a plan and we must trust him all the way. God Bless!

  11. Kristie says:

    Your courage and strength is inspiring. Praying for you and that sweet baby.

  12. Abby says:

    Praying for you and your sweet boy. Praying for peace and comfort right now. I just wanted to say I have a really good friend that had a baby brother that had trisomy 13.. He had many of the same things and doctors told them he wouldn’t make more then a day or two. He actually lived to be 3. I know it is rare but he was a great blessing to their family and I love talking with the siblings about how much their lives changed during that time but all for the better. 🙂 Anyway, thank you for being open and once again know people are praying for all of you!

  13. Mary Lou Knebel says:

    Keeping you in our prayers.

  14. Alisa says:

    Sharing this takes great courage and God has chosen you to share this story! Prayers for your family. Peace to you!

  15. Theresa Robideau says:

    I can only imagine your pain and anxiety. God bless all of you! You will be in my thoughts and prayers.

  16. Erica , friend of the maxey's says:

    I will keep you, baby and family in my prayers. I pray that your baby will come out healthy and strong and that the doctors are able to do everything they can to bring this little person into the world…

  17. Sarah Abernethy says:

    I will be praying for you and your family. I hope you are able to find some peace in knowing that at any given moment you are being held up in prayer by many people.

  18. kylee sutton says:

    May God bless you through your guys trial and tribulation you are experiancing..know that your honesty and laying out your heart and giving praise to God through it all is amazing! I WILL DEFINITELY be praying for both of your strength and for baby maxey. Through our hardest times in life God will strengthen us. No matter what may or may not be normal God will have a special plan for all his children. And you may just be the women God needs to give the right unconditional love and nurturing baby needs. My heart is truly with you I pray for a bless path and understanding ahead.

  19. Kim says:

    Your faith and love will get you through this tough time. I am so impressed with your way of writing and expressing your thoughts. It is obvious you have your trust/faith and focus in the right place. I am Praying for you and your entire family though this difficult and wonderful time. I love that you are willing to fight for and with your child, That is true love and love along with your strong faith can get you through.

  20. Kylee says:

    My prayers are with you and your family and your precious baby boy <3

  21. So many thoughts and prayers to you, your family and friends during this time, Shannon! My heart aches for you.

  22. JIll says:

    God bless you and your family. I will be praying for you. Thank you for your courage and sharing your story. I hope all the feedback gives you more strength.

  23. Lydia says:

    You are in the Hollow of His Hand. Prayers dear ones.

  24. Nancy Harting says:

    Thank you for sharing your story,Shannon and many people will pray for knowing it. Grandpa and I read your writing with tears in our eyes. I have been praying for baby Maxey, since knowing of his life tucked inside you. God loves you, Josh, Adelynn, and Baby Maxey. Praying for all of you. Love you so much.

  25. Chris Caldwell says:

    I will lift you and your precious baby up in prayer. God has a plan. “For I know the plans that I have for you,’ declares the Lord, ‘plans for welfare and not for calamity to give you a future and a hope.” Jeremiah 29:11

  26. Tara says:

    Praying for you and your precious family.God has a huge plan, far greater than what we can ever desire for ourselves and I know that he has a extraordinary purpose for this precious child, in your life and the lives of those that will someday meet him. Keep praying, trusting and seeking Him!!

  27. Kandi Ryan says:

    Dear Lord,
    Bless Shannon and the living promise of this precious baby and help her to manage the mix of joys, fears and anxieties she may have about the time ahead. In your Loving name we pray, Amen.

  28. dena says:

    Prayers for our Lords Comfort, His miracles in you (parents and family) and baby’s lives during pregnancy and after, and Faith!! God has a special purpose for your baby!!! May His Blessings Surround and Fill you!!

  29. Wanda gore says:

    1st Thessalonians 4: 14-17