Hello, dear readers! Before Thanksgiving, I wrote about the upcoming addition to our family, a little girl that was born on November 30th, to join big brother, Theo, 21 months. I’ve always been very honest, as a person. And I’ve always shared what I’m going through on the blog. Like the loss of my beloved cat Sushi, or the fertility journey we took to start building our family. Not only is it therapeutic for me, but I genuinely believe that truth brings people together and helps us all feel a little less alone.
It is with deep, deep regret that I’m sharing the following news.
Our beautiful Nora Pepper is still with us, but she won’t be for much longer. When we brought her home, she was extremely lethargic. We had the doctors in labor and delivery, several pediatricians, a home health nurse, and a lactation consultant on our team, and they all said she was just sleepy because she was born at 37 weeks. That can take a lot out of a gal! They all told us, “In the magic of time, she will wake up.”
And in 99.99% of babies, they would’ve been right. But a week later, she was still not waking up to ask for food, and feeding her from a bottle was an hourlong ordeal every three hours. She was only taking 1.5 ounces each time, and barely. Her weight was down. I had a sinking feeling all along in my mother’s heart, and I finally insisted that we go to the hospital. Luckily, we live 15 minutes from Children’s Minnesota, a world-class facility that sees a lot of very complex neonatal cases.
After ruling out any acute causes of lethargy, like infection, we were left with something much more devastating. A chronic condition. Physically, our wonderful Nora is absolutely perfect. Everything is formed beautifully. And I’m not just bragging as a proud parent about her ten elegant fingers, her curly eyelashes, or the softest newborn hair I’ve ever kissed. We’ve had all the x-rays and MRIs in the book, and she is physically flawless.
But due to a rare, random, and terribly cruel genetic mutation, Nora has a pattern of brain wave activity that is incompatible with life. Or at least a life that involves any cognitive awareness whatsoever. It’s likely that her brain was built like this from the start, has never functioned in any other way, and never will. The evidence-based data on this type of brain wave pattern is invariably grim. In short, this state has been described as “the worst pattern short of electrical silence” and “a preterminal finding”.
We have Nora back from the NICU, and next week we’ll repeat a brain scan. If the findings are the same or worse, which we are completely expecting because of the hard data on this condition, she will enter hospice care at home. We will spend our last days together as a family, and we will make sure that all she will ever know in her brief time is pure love.
I believe in miracles. I do. Snow on a quiet morning is a miracle. My son’s laughter is a miracle. The overwhelming love and gratitude I feel for Nora, even as her condition has put me on the loneliest and most difficult road I’ve ever walked, is a miracle. Unfortunately, there is not going to be a medical miracle. The sad but simple truth is that, all of these things about life that are miracles, Nora will never be able to experience. Not in this case. Even in the magic of time, she will never wake up.
My husband, Todd, and son, Theo, and I are tremendously blessed. We have the support of friends and family, we both have meaningful work to help us feel human, we’ve found strength we never knew existed inside ourselves. Because Nora’s prognosis is so rare and so dire, we’ve been invited to participate in a comprehensive research study where her entire genome will be sequenced. Since her condition is coded into her genes, there is no way to help Nora. Even if we find the exact mutation, the die has already been cast. But maybe, in some small way, she will help another family down the road because of what the research team can learn.
This is a post I never thought I’d have to write. All any of us can do when the road turns dark is to keep going. I’m grateful for the opportunity to call Nora Pepper Macdonald my daughter. She always will be. Even as my heart is broken, it is somehow more full than ever. If you’re reading this, you’re part of why. Thank you for listening to our story.
Credit for these beautiful photographs belongs to Sarah Ann Photography, and they were taken before we found out. We are thrilled to have these treasures, we will cherish them for the rest of our lives.