Scream and shout

Yesterday, Ella had yet another head  ultrasound. Normally, we get bad news right away and good news later in the day.

Our baby girl has been doing so much better; alert and active, stretching and responding to touch. Last week, they told us that her ventricles were down in size, and we exhaled with relief. Yesterday, they told me they were down again and I assumed that we were finally on a clear path of her getting better.

But, today, I said goodnight to the girls and was about to leave when the doctor came in and wanted to speak with me. He had me sit down, Ella’s ultrasound report in hand. Asking me what I knew so far, I recounted our various conversations with another doctor and my understanding of what they all meant.

He drew me a picture of the brain and explained that Ella now has cysts that have formed on her right side, a side that we previously thought had escaped injury and was looking good. Now, the damage is on both sides. He told me almost certainly she will be disabled in some way.

The doctor took me from the room, from the warmth of my girls into the cold back area filled with monitors and staff. He had me sit and he showed me every ultrasound, pointing to every injury. He used medical terms and kept pointing to his head to show where we were looking at my sweet baby’s scans. He told me the name of the injury, but said not to google it. I haven’t, I’ve been too scared.

He went from picture to picture, showing me the past damage and now, the new ones. He talked while I sat, hunched over and mumbling “okay” whenever he paused. He showed me Raegan’s scan to reassure me that her scans were good, but instead it just showed how obvious the difference is. He told me we don’t know what will happen. What will be different, or how severe. He said she may not move properly, or not be able to see, hear, or speak, but said we won’t know until later.

He talked and talked and I wondered what everyone would do if I started screaming or crying or threw the monitors on the floor. Here we sat, surrounded by staff, as he told me more news that I wasn’t even sure how to process.

“What does that mean?” my Dad asked. I have no fucking idea.

I’m home, hours later, but I still feel like I’m sitting there, hunched over, staring at images of my baby girl’s injury and not have any understanding of what’s happening.

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4 thoughts on “Scream and shout

  1. Thinking of you and your sweet girls.

    There’s a preemie parent group “life after Nicu” on Facebook where you can ask questions of other parents. every baby is different but I know it’s helped reassure me at times.

  2. The not-knowing must be so scary for you. We don’t know what God’s plans are, but we know he loves all his children. I’m praying for healing for baby Ella and peace for you.

  3. Sending lots of love to my three favorite (favourite) Canadian gals & 2 favorite Packers fans 😉 Wishing I could hug you right now and slap that doctor simultaneously. Stay strong and keep faith. Love & peace xoxox

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