Well, I’ve been battling with how to actually do this, but it’s time. I have struggled sharing our journey in this format for many reasons- one is that I am a very naturally private person. Another is that I am not feeling great very often, so don’t have much physical or emotional energy beyond taking care of my family. However, our desire is to be as transparent as possible with how the Lord is using this trial, and quite frankly, we can use all the prayer we can get on this daunting road!
So, how do we share this type of news with the loving community we have connected with over various seasons of life and answer the inevitable questions that follow? We HOPE this blog can be a source of connecting and bringing unity through prayer, support, and awareness from those who so desire it.
In 2015, we began as a family of 4. In January, my husband and I, and our two daughters, found out our family would be expanding 🙂 Like our first two children, we planned for a home birth and being surprised by gender at labor.
The first three months of the year are really a blur as I dealt with horrible morning sickness (all day), felt more tired and depleted than I had remembered, and felt incapable of doing anything beyond surviving and taking care of my family each day. Nothing ever brought “alarm” about my health- often I’ve heard that the more “sick” you are, the more likely you will have a healthy baby. That was positive since I have had a couple miscarriages in the past.
A little irony comes to play here, after seeing my midwife and everything seeming “normal” for the first few months… we had our thorough mid-term pregnancy ultrasound. Our girls came with us, and we were all excited to “see” our new baby on the screen! The tech took WAY longer than I remembered necessary, but Brandon didn’t think that meant anything so I quickly dismissed further pondering. However, a few hours later, I got a phone call from my midwife. I have a great relationship with her, and I could read in her voice immediately the seriousness. She shared that the ultrasound review showed a couple signs of concern. One was our baby’s size – much smaller than should be expected. But more significantly, there is an abnormality in his brain shape. We needed to pray and pursue further help.
We were referred to a well-known specialist who confirmed, yes, the ultrasound shows two serious abnormalities, which we learned are connected. Baby has a “lemon shape” head (brain defect), and a spinal defect – the spine is protruding outside the skin at the base of the back. We were simply told at the time that this was called Chiari Malformation. We were given a window of hope that over time, it could be more minor as the baby grows, but warned it could also become the evident worse-case scenario which would mean immediate surgery and intervention for this child’s life, even before term.
Wow. Not sure how else to say that we were shocked, to say the least. We have no family history of this, or any extreme birth defects genetically as far as we knew. No substance abuse from either of us, and we strive to live “healthy” active lives. A+B=C, right?
We have since then learned a TON about this specific type of defect – a neural tube defect. The name for the condition is Myelomeningocele and it is an extreme form of Spinal Bifida. We both never really even knew what Spina Bifida was or the various ways it could affect people, but thanks to Google and some internet browsing, we were quickly introduced.
Needless to say, since first learning about our baby’s health concerns, we have realized that this entire pregnancy journey will be flipped upside down from what we have known.
SO…Why not take advantage of all the ultrasound trips and get to know our baby in a new way? We soon found out/shared at a little family ‘gender reveal party’ that our baby is a boy! What a surprise, our first son. It has been so special connecting with Elias in this unique way.
Being a high-risk pregnancy, we have had to mentally transition to this being a hospital birth with MANY specialists involved. We’re learning to be thankful for the medical resources that we have abundantly available for “such a time as this”. After two home births, this has been a whole new world, getting to know the various staff members at our hospital, and learning the way the system works. And we know that this is only the beginning…