Norah Maye’s Story

Our sweet Norah Maye, her life was much too short for our liking, but perfect in the eyes of our Lord. She began as just a little Wiggles who grew into a perfect little Norah Maye who resides forever in our hearts. Her little life here on earth began around May 30, 2015 and we were overjoyed by her arrival! But as the timeline reveals, her life, though small, was exactly what God wanted it to be.

May 30, 2015 – July 12, 2015: Wiggles’ first appearance was on a pregnancy test on May 30th. My husband, Jonathan, and I were bursting with both fear and excitement as we read what the test said and over the past 14 weeks those feelings have only become more real! Wiggle’s first 12 weeks were full of fun plans, lots of ice cream, pinterests searches, trying to eat healthy, drinking lots of water, constipation, some heart burn, and a gag reflex that made itself known very frequently. They were good weeks! I felt healthy although fearful of the mysteries of how this pregnancy would play out. The fear came from the fact that Wiggles already has a sibling with Jesus. And because of this little sibling, the doctor was keeping a close eye on us. We had our first ultrasound on June 8th, and we jumped at the chance to see Wiggles first hand! There was no heartbeat at this appointment, but we were assured that the next week at our second ultrasound we would see one. And we did!! We were relieved and excited that Wiggles really would be a reality!

July 13, 2015: Wiggles’ third photoshoot was on July 13th when we went for our first doctors appointment! It was at this appointment that Wiggles got the nickname! We saw her wiggling all over the place and joy abounded!! It was also at this appointment that something strange showed up on her brain. We were instructed to make an appointment with a perinatologist (high risk pregnancy doctor) to get more information. This news was scary, but we knew God is/was in control always!

July 28, 2015: After two longs weeks of waiting, on July 28th, we headed to Joplin, MO to see Wiggles again and get some answers about this strange thing on the brain. It wasn’t long after starting the ultrasound that it became very apparent that something was quite wrong…

We found out that Wiggles is a child with Holoproencephaly. This is a really severe birth defect that may be genetic or a developmental “accident” that happens in about the 5th or sixth week of pregnancy where the brain cells don’t split correctly and depending on severity, the frontal lobes don’t develop at all. So, there is severe cognitive brain damage and significant facial deformities. Our Wiggles most likely would not speak, walk, and only God knows if she will eat or breathe.

While at the doctor’s office, I had a blood test to begin genetic testing and hopefully get more answers. Based on this appointment, all indications are that Wiggles has the most severe form of Holoproencephaly. The likelihood that Wiggles will survive pregnancy is very low, but she may have done just that, just on brain stem activity. A live birth could last hours or years but never very many. This is all what the doctor said…

“Terminate the pregnancy” also were words out of the doctor’s mouth that were neither acknowledged nor given credit too. This is our child!! And we plan to let God make the decision on how her life will play out! And with this, we left…

Heartbroken doesn’t even begin to describe how we walked out of that office! Numbed, shocked, overwhelmed, exhausted, and utterly and completely broken!!

August 10, 2015: We had an uneventful OB appointment in which the main theme was “Wait.” Our Wiggles had a heart beat of 150bpm and we found out a previous blood test cam back inconclusive…Read more about this appointment here.

August 16, 2015: We really began praying for healing at this point. We want Wiggles to be whole, free from ailment. We want his/her little brain to be complete! We want Wiggles to suffer as little as possible.  We want Wiggles to be healed! Read more about this prayer here.

August 26, 2015: Wiggles is a GIRL!! We found out from a blood test that not only is our little Wiggles a Girl but she is free from genetic abnormalities! This is a huge praise! And now knowing her gender, we decided to name her Norah Maye. Read more about this 16 week update here. And learn more about why we named her Norah Maye here.

September 9, 2015: We had another OB appointment today and after quite a search our doctor was still able to find a heartbeat that was 140bpm strong! Our Norah Maye is still fighting and still changing us in ways we can’t even comprehend! Read more about this stage of the journey here.

September 14, 2015: Oh to be in the arms of Jesus. We found out today that our precious baby girl has gone to be with her Mighty Creator. We had our perinatologist appointment today to get more pictures and have an amniocentesis and not long after arriving it became very clear that God had certainly answered our prayer and has healed our Norah. Heartache doesn’t begin to describe the feeling of this news. Read more about this appointment and my emotions here.

September 15, 2015: This day will forever be considered our Norah Maye Day.IMG_2757 It was the day that we held and loved on our sweet baby Norah’s body outside of the womb knowing without a doubt that her little soul was already enjoying eternity with Jesus. She was perfect! Read more about our Norah Maye Day here.

She was a miracle. I feel so blessed to be her mother to be the one person the most intimately acquainted with her here on earth with the time we spent sharing the same space. IMG_9016Her memory is a constant reminder of just what a miracle life is. Norah was here because here is where God wanted her to be and I will forever be grateful to God for making me her mother.


One thought on “Norah Maye’s Story

  1. What a gift that you would share your journey and pain. Our first grandchild died at 8 weeks. We know he is with Jesus too. Thank you for you heart!


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