Day Seven

Someday I will write about something that doesn’t make me cry.

I want to look back and remember yellow leaves in Cayden’s hair, Piper raking too many sticks in the leaf pile, and Judah’s forced school picture smile. I want to remember when I put up the tripod and set the timer and everyone smiled on the first click.

I want to remember when we took pictures with the little pink shoes before we knew they might never be worn by baby sister.

I want to remember there is still good.

I want my children to see it’s ok to smile and laugh even when we know something devastating is going to happen.

Seven. I’ve had seven pregnancies.

My first pregnancy miscarried in March 2010 and this baby inside of me is due March 2021.

One week ago, I grabbed my camera and tripod, leaving the house with the promise that I would bring back video of baby sister for the kids to see. In a darkened radiology room, I fumbled to extend the legs of my tripod and figure out the best screen to record. Ultrasound rooms are almost sacred to me, as so many of my defining “mom” moments have been held here.

March 2010 – After a torrent of blood and fear brought me to the ER, I was taken into the depths of the hospital in a tiny room where no one talked and I didn’t know what to look for on the grainy screen. I know now that the movement I saw was my own blood pumping, not any sign of life from a baby we had been excited to meet in the fall. My fears were confirmed – that baby was gone.  

November 2010 – We nervously walked into the radiology department because our first ultrasound a month earlier had shown white spots (possible calcification) on baby #2’s heart and lungs. The tech talked us through the ultrasound and we learned we were having a girl, but we had to wait to breathe again until the doctor finally told us the good news that the white spots had stayed the same or gotten smaller.

June 2015 – I could barely speak to reception as I checked in at radiology for an ultrasound of my 14-week-old baby #4. A few hours before, I laid on the OB table while the PA kept searching for a heart that was no longer beating. It was a quiet room again in radiology as the tech took measurements of arms and legs that didn’t move, a perfect profile that would never laugh. It was unfathomable how my intricately formed son’s life was gone in a moment.

Images have always left lasting impressions on me – they live forever in my memory. Of course, there are good ultrasound images I’ve experienced – those of my other two children who were healthy and delivered without problems.

My latest ultrasound, I expected nothing but good things when I set up my camera to record. I was wrong. With the camera rolling, I saw the profile of my baby had changed since I saw her last. Instead of a crown, her forehead was just flat. I shrugged it off…things can look strange on ultrasounds. The tech gave up quickly on a “good” profile pic, where normally, they are printing off copies for me to take home. He went on with thorough measurements of the body parts, chuckling reassuringly, showing me the different parts of the brain and measuring the femurs and ulnas. He captured stills of her feet and hands and took his time, never letting on that there was a problem. After he finished, I still wasn’t holding any prints, which was odd, but this wasn’t in normal radiology, it was a special ultrasound because of my “high risk” status – due to 3 prior miscarriages and age 35. I was to see a specialist right after my appointment, who would go over any concerns. When the specialist came in, she looked around a bit more, and then looked down at me and told me she was very concerned with the baby’s brain growth. My daughter’s brain was 3 weeks behind in overall growth, 6 weeks behind in cerebellum growth. The rest of her body was about 2 weeks behind on growth, so it wasn’t that I had the wrong due date – something was very wrong.

When I asked the doctor to be straight with me, she responded with, “I’m really worried about how she is going to function.”

In this moment, I realized the devastating reality…this baby might not be mine for long.

We talked more about outcomes involving short life and extreme impairment, and how there are so many unknowns at this point. The radiology tech quietly folded up my tripod and I switched off my camera.     

Reaching down to get my purse, I was suddenly crippled by the thought of telling Cayden and Piper that their baby sister was not ok. I doubled over against the chair and sobbed. Everyone in that room needed a hug.

I went home and broke the hearts of my sweet family, cancelled all my plans for the week and read Psalm after Psalm to my 9-year-old, who couldn’t stop crying at bedtime.

There’s so much we don’t know and the only way to find out more is to wait.


There’s no obvious cause, no glaring body defects to give us a clue, no raging infections that brought this on. We’ve searched through our genetics to try and find any markers for chromosome abnormalities or brain defects and came up short. We have tested me for the most common (70%) “missing chromosome” syndromes and they came back negative. So now we are wading into the 30% of cases where it’s possibly one of rarer syndromes involving missing or extra pieces of chromosomes. But, knowing what caused this has 0% chance of changing the outcome. There’s nothing we did, nothing we can do, but wait and see what happens.

Talk about out of control.

We are left lifting our hands up in surrender.

I thought I understood how to give up control to God. From conception to birth to year 9 of my eldest’s life, I thought I understood that I was never in control. With the losses came clarity about peace only God can bring and just how blessed I am to have three healthy children. But this is a whole new perspective. We are stepping into a new life as parents of a severely disabled child with a short life expectancy.  

We hold fast to the truth.

We know God is still good.

We know that he loves us and our children.

We also know that this world is not the end.

Someday, we will ALL be made whole again.

Comments

Vera Lyons said…
My love and prayers are with you and your family. ❤️🙏🏻 Vera

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