The Burden of Good News

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Yesterday marked exactly one year since Madeleine’s first brain surgery.  One year since one of the most difficult days of my life.

Once we knew Madeleine was in trouble – once we figured out that her brain hemorrhage wasn’t going to self-resolve, once we knew that the ventricles were dilating, once we knew that she needed help – things moved pretty fast. Faster than I was prepared for. We were sent to another hospital, a new place that functioned totally differently and where nobody knew my little girl. Matt was out of town on business, which was terrible, awful timing, and I felt terrified and alone. And that day, the day of her surgery, while I waited for an update and tried not to think about my impossibly tiny baby lying on a table while someone cut into her skull, it really hit me for the first time that maybe things would not be ok. Maybe it won’t all work out in the end.

Today, one year and one day later, we headed back to Sunnybrook for our 10-month follow-up appointment. The twins had come so far since their last visit, when they couldn’t crawl or stand or climb over things. They babbled and laughed and ate Cheerios and destroyed things and were their usual amazing selves. The follow-up team was pleased with their progress, as I thought they would be, and we were told that chances were good, at this point, that Madeleine likely would not be facing any major impairments to her development.  She hears and sees just fine, she’s social and talkative, she’s hitting her motor milestones, she eats well, she’s growing, she’s developed strong attachments to her caregivers.  In other words, she’s thriving.  She will most likely walk and talk and run around and play and tell jokes and be the hilarious girl that I know she already is.  We’ve had a barrage of bullets thrown at us, and we’ve pretty much dodged them all.  She has dodged them all.

It’s great news – the BEST news – and I am so grateful to hear that the people in charge of monitoring Madeleine and Reid’s development down to the tiniest detail think that she is doing so well.  So why do I still feel like vomiting whenever I think of her future?

Each visit to follow-up is more than just a checkup.  It’s another chance for the doctors to see the things you are afraid they might see – delays, developmental problems, disabilities.  Maybe this will be the visit that will force us to realize our children aren’t doing as well as we think they are.  Today, they said she’s doing great, but what about next time?  Or the time after that?

And then there are all the babies, the preemies born earlier and later than my preemies, the ones who struggled even more and won’t get to dodge all the bullets, and the ones who didn’t even get to come home at all.  The babies who had brain bleeds just like Madeleine’s and didn’t survive.  The babies who made it to 28, 29, 30 weeks and should have been fine but weren’t.  What about them?  My babies just squeaked by viability.  They shouldn’t be doing as well as they are.

Maybe it never leaves you.  Perhaps the worry, the fear, the misplaced guilt and the universal sadness for every mother and every preemie and every heartbreaking story, maybe that’s part of having spent days waiting in a new, lonely hospital, trying not to think about the surgeons operating on your delicate, sick, little baby who was still only thirty-two weeks gestation.  Maybe those feelings live inside every mother, except not all of them are forced to feel it.

I am so, incredibly grateful for Madeleine’s progress – it is so much more than I could have dreamed of when I first starting contracting at 24 weeks.  But I’m not relieved.  We still have a lifetime’s worth of bullets to dodge ahead of us.

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8 thoughts on “The Burden of Good News

    • It’s funny, I often wonder what they will make of all of this when they are older. Will it even mean anything to them when I say they weighed less than 2lbs when they were born?! But what a miracle, regardless. Thanks for your comment :)

  1. I know what you mean about the “survivor’s guilt.” My 23 weeker is doing well. SO WELL! Why? It’s hard not to think about the families who do not have such a good outcome. I’m also constantly waiting for the other shoe to drop. It’s a heavy burden to carry. I’m thankful for blogs and for social media so we know we’re not alone!

    • Thank you for saying everything you just said! Sometimes I forget that what I’m feeling might be entirely normal given our experience. I am also so grateful for blogs – who knew it would be so healing?

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