On July 22, during a 20-week ultrasound, we learned something was terribly wrong with our baby. A week later, a specialist told us our baby has zero chance of survival after birth. We are still waiting on bloodwork to show if we are looking at Trisomy or something else. There are abnormalities with our baby’s heart and other organs, and the head is full of fluid, where little or no brain has developed. We believe God isn’t finished with this story yet, and we will praise Him no matter the outcome.
Thank you for following our story…
As I get ready to write this next part, I am suddenly thinking of the story in the Gospels (Mark 4:35…) where Jesus and His disciples get in a boat to cross to the other side and it seems quite suddenly “a furious squall came up, and the waves broke over the boat…” I love how Jesus was so unfazed by this that He was SLEEPING. But at the urging of his panicking companions, he arose and “rebuked the wind and said to the waves, ‘Quiet! Be still!’”
And while I was just looking up that portion of scripture to read it, I realized the song unconsciously running through my head the past half hour or so is the lyrics from Rebecca St. James…
“I see the waters rising
I feel the coming storm
When fear is overwhelming
I hear ‘peace be still’.”….
Didn’t I say God gives us what we need… even before we need it?
I was clinging to Scripture the day we drove to Houston (Tuesday, July 29) for our appointment with the fetal-maternal medicine specialist.
We dropped the kids off with some amazing friends who bend over backwards to help us and drove through the rain to get to our appointment early. If you know us in person, ‘early’ never happens for us. I hoped it was a sign of miraculous things happening. (I’m just kidding, actually.)
Thankfully, I wasn’t nervous until about 10 minutes before we were called back to the ultrasound. Jeff noticed I was fidgeting and I forced myself to calm my breathing and focus on Scripture. Jeff, as usual, was a solid rock. In these moments he totally lives up to the meaning of his name, “Divinely peaceful.”
We were ushered into a large room with the Dr. and three other assistants present and I was shown to “the table” while the Dr. confirmed some information with me and marveled (although not admiringly) at how many c-sections I’d had, as if I did this for fun.
Within 30 seconds we knew.
I had been told this Dr. was quite blunt (although compassionate) and I was grateful for that. Blunt answers were what we wanted. He performed the ultrasound himself and talked the whole time about exactly what he was seeing and what it meant.
The first and major problem: “this black space in your baby’s skull.” He confirmed that we were not just looking at “a little fluid on the brain.” He could see no midline structure and he zoomed in to show us that there was actually no brain formed except a tiny portion.
He moved on to show us that the heart did not look normal, and other organs also did not appear normal, but since the fluid around Baby was low, he had a hard time getting the baby to move into a better position for looking at things. This also meant we could not see the gender. And could not get a glimpse of baby’s face either. God still wants to enshroud this child in mystery, I suppose. That is His right.
All markers we were looking at, he explained, pointed to a Trisomy condition, but this would only be confirmed through the bloodwork we are still awaiting, or an amniocentesis, which we will not have done. The doctor allowed us to ask any questions and asked what I wanted to do… in other words, did we plan to continue this pregnancy?
Yes. Of course.
He was gentle and apologetic and confirmed for us that there was no hope of our child living after birth. I didn’t take my eyes off our baby on the black and white screen, and tried to force my tears to wait. But they came with full force quite unexpectedly as one of the assistants handed me tissues she’d already had waiting for me.
Again, we were leaving the room with no sweet ultrasound print out of our child.
I quickly wiped jelly from my belly and tried to hike my skirt up and my shirt down to appropriate levels while the Dr. said things to me I wasn’t comprehending like what my OBGYN would do next and follow up appointments.
My world was spinning. We thanked them as they all apologized and we left the room. We weaved down hallways to the scheduler’s desk, where a sweet woman tried to make small talk with me and ask if I was okay, but my throat was closing and I silently begged for her to hurry so I could get out of the public eye and completely lose it.
She handed me my little card with the date of the follow-up appointment, which Jeff had actually scheduled with her because my brain stopped working.
Then we had to go back out the way we came, though a waiting room full of eyes as I just let Jeff lead me since my vision was becoming blurred with tears.
Finally outside the office suite, Jeff took my notebook to hold for me and I found my way to a bathroom down the hall, where I locked myself into the handicap stall and tried to heave sobs as silently as I could.
Some sweet kid and her Mom were in the stall beside me, chatting happily and I covered my face with wads of tissue to try muffle my cries but I just shook and sobbed. Oh, how I wanted to just have my baby healthy and take him home to nurse and grow.
I silently mouthed my prayer to God, “this isn’t what I wanted, but I will walk through whatever you want me to, and I will still say that You are Good.”
God, I will still say that You are Good.
I finally gained some control and met Jeff back out in the hallway where we silently walked together to the elevators and out doors and to the parking garage… it was all just a blur of tears until he put me in the passenger side of the truck, reached over to start the ignition, and sat there with me and began to pray.
I still so distinctly remember the album we were listening to that day in the truck was Rebecca St. James’ “I Will Praise You” and the chorus playing that moment as I sat and cried and prayed with Jeff was one I picked up so clearly in that moment…
“Almighty God… is a fortress..
He is with us….
God is with us…”
I have never doubted it.