Prematurity Awareness – Our Journey and Loss

November is Prematurity Awareness Month.

November 17th is Prematurity Awareness Day. Across the nation, you’ll see buildings and fountains and other things turn purple. For many parents, this awareness is triggering and painful as we remember our own stories.
This is a part of mine.
7 years ago… I don’t know how it can be seven years and for my heart to still hurt as badly as it does, but this is life when you’ve lost a child, a baby.
In November of 2011, I was in a hospital bed for over a month, praying that they would find a solution for Kathryn. That Charis would continue to grow. That I would not go into labor only to deliver two dead babies. I usually couldn’t allow my mind to go THERE, so I just shut down from thinking. When the doctors stopped planning for what would happen to Kathryn after delivery, I knew they’d lost hope for her. But I couldn’t. I wouldn’t.
I also didn’t want to think about it.
I binge watched every episode of Criminal Minds that TBS or TNT or whatever channel it was played, hour after hour.
I tried to be nice when people came to visit, but really, it took every ounce of energy I had to just keep my hopes up. My dad would often come and just sit in silence by my side. We didn’t have to talk. He was just there.
prematurity awareness
Sometimes I got to go for “walks” to get out of bed
I was angry that I was missing the lives of my two little babies at home, especially Ella. I feel like I missed her entire toddler-hood. From the time she was 15 months old until she was 4 or 5… TTTS stole that from me. Prematurity stole that. The death of one of her siblings and 3 months in the NICU with Charis stole that.
My babies suffered from a condition that affects identical twins. Twin to Twin Transfusion Syndrome (TTTS). It affects 20% of identical twins and is 100% fatal if not treated. For 10 weeks from diagnosis at 20 weeks pregnant, we did our best to save the babies. They were born at 30 weeks gestation. Kathryn had severe heart issues, one entire side didn’t function, and she had developed hydrops fetalis – a condition in which fluids continued to build up in her body. They tried for two days to stabilize her, but were never able.
Kathryn and Charis. They were never able to be together. This is a photoshopped image of what I wish I’d had…
Charis was growth restricted and only weighed 1lb 10 oz. Her little body was translucent. She had many ups and downs in the first few weeks. I did not even get to hold her until she was almost a week old.
PSA – you don’t ever GET OVER IT. Not just loss… the NICU time, the fear, the worries, the constant scares, the PTSD. It’s always with us. I still struggle when I go to the NICU. The sights, sounds, smells are very triggering as I remember the tremendous loss we suffered and the days, weeks, months of waiting to take our baby home. Praying that she would not suffer any major issues from being a micro preemie. 
And miraculously, our survivor came out with no residual issues, aside from being really tiny for her age.

Time heals all wounds, right?

Yes, it gets easier. Yes, life returns to a different kind of normal. Moms in the loss community call it our “new normal”.
We change. We grow. We do our best to help others come back from that awful place of sadness and grief. I wrote a book and started a nonprofit to help grieving mothers. Sunshine After the Storm: A Survival Guide for the Grieving Mother was cathartic and healing for me. But it’s never enough… 
We always pause when someone asks us how many children we have… and I always envy mothers of 4…
But we do more!

We advocate. Or as we like to call it around here, we MOMVOCATE.

But very importantly. We RAISE MONEY.
Because money means better equipment, more training, more research… more chances of a cure.
And in my lifetime I have one overall goal. To be a part of the CURE or at least better treatments.
If I can save ONE baby and the ripple effect of loss that ONE baby has on the world through my fundraising efforts, I will have done my duty.
But I’m greedy. I want to save ALL the babies.

You can help.

Please consider a donation to my March for Babies team. The advances, training, and equipment in modern day Neonatal Intensive Care Units (NICUs) is because of the March of Dimes.
Oh, and also the cure for Polio – which everyone has benefitted from in the US, even if you can’t identify with prematurity/NICU.
Your support is personal to me. And I thank you in advance.

Do you have a NICU story to share or a special Preemie to honor? Leave a comment or come share on Facebook

Get your MOMVOCATE products and we’ll donate proceeds to the March for Babies!