Our Story

Hello, thanks for popping by! You may be here for a couple different reasons, but after reading I think you may realize that you have found yourself in the middle of a story that is being written even now. We welcome you to be a part of it, to take this journey with us and be a part of what God has planned for our little family. This is a place where you will experience through your reading, the life of our child, affectionately nicknamed…Wiggles.  You should also know that these updates will be real.  They will seem raw and harsh at times, because I can’t pull myself to write any other way.

You see, 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 hanging out 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!

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 him/her wiggling all over the place and joy abounded!! It was also at this appointment that something strange showed up on the 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!

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 day 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 will not speak, walk, and only God knows if he/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. Those tests are still pending. There are still other tests that will need to be done, but Wiggles needs to grow more for those. 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 he/she may do 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 his/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!!  It has been about two weeks since the diagnosis day…it seems like 2 months!  We have shared the news with close friends and family, and although it would be nice if it got easier each time, it doesn’t.  There are still so many unknowns and so many questions both for God and for the doctors.

And so we wait…and while we wait, we live…at least we try to.  We get up each day, go to work, distract ourselves for as long as we can, and try and be grateful for one more day with Wiggles.

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