Olivia Grace – Our sweet girl’s journey with congenital Spinal Muscular Atrophy (SMA)

A Complete Collection

September 13, 2016 18 Comments

It’s strange and sad to think that all the pictures and videos we have of Olivia are all we’ll ever have. Surely our memories with her will last a lifetime, but the actual collection of pictures is complete. I’m thankful we have (literally) thousands of pictures of her, but it’s a hard pill to swallow that there won’t ever be another. It makes me cherish every single one more than I thought possible. Even the outtakes. The ones I wouldn’t post online because I worried about how she looked hooked up to so many machines and with tape across her face. The ones I didn’t share on the blog because the lighting was bad, or the picture was too grainy, or her outfit didn’t match her blankets that day.

Every single photo now means the world to me. They bring me back to a very concrete moment in time when she was here and we were there with her. I still scroll through the “favorites” album on my phone a few times a day, and I usually watch at least a couple videos so I can see her little fingers waving in the air or catch her raising her eyebrows at us. I’ll re-watch a video where she starts crying because I’ll never see her cry again, or I’ll watch the clips of her on our walks outside because it reminds me that we gave her as much as we possibly could.

Anyways, this thought all started because I’ve been creating a few physical artifacts to help us remember Olivia. Videos like the one above, framed art, photo books etc.

While working on each project there’s been this overwhelming sense of finality. Finality might be the wrong word, but the thought crossed my mind that I probably won’t ever make another video of Olivia… because we won’t have any new material to work with. And the photo book I’m putting together isn’t going to be just the first of many. This will be the only one. The word that keeps making its way into my mind is “complete”. I’ve now organized all of our pictures: from my phone and Luke’s, from my big camera, from Jocelyn and from Now I Lay Me Down to Sleep. I’ve organized the pictures and the videos separately, grouped certain events in aptly labeled folders, and as I did so I realized that all of these files represent Olivia’s entire life captured on camera. It’s like this amazing collection that I will never, ever let out of my sight. I cherish it and love looking through it, and yet the whole time there’s this constant reminder that this collection of photos and videos is complete. It will always be exactly as it is right now.

This video above is one of the things I recently started… something I’ll add to the collection of things that capture Olivia’s life as a whole, from start to finish. Something we can watch over and over again whenever we want to see our little girl. Something to remind us that she was fiercely courageous and just so darn sweet, and that that’s how we should be too: relentless, strong, full of life.

I hope you enjoy watching it as much as Luke and I do.

Stories from Mom

How To Vacation After Loss

July 20, 2016 18 Comments

Take daily walks.
Touch the ocean at least once a day.
Drink water.
Cook meals consisting of only whole foods.
Read more than one book,
but watch TV if you want to.
Go to bed early.
Don’t set an alarm.
Be okay (not bored) with the simplicity of it all.
Enjoy the silence; don’t break it.
Stare at the sky for as long as you’d like.

See her, everywhere.
See her in the beams of sun, the blue sky, in the stars at night. In the birds and the dragonflies. See her in the seashells, and the shapes in the clouds, and the rainstorms. See her, everywhere, and say hi.

Hear her in the whistle of the wind, in the waves as they wash ashore. Hear her as the water rushes out to sea, running over the seashells, sounding like a thousand ringing bells. Hear her giggle and whisper “I love you, too.”

Listen closely. Listen to her tell you stories about heaven. About the friends she’s made, and the people she’s met, and all of the things she can do now. Listen to her tell you how strong she feels now. How free she feels, and how her arms and her legs wiggle with delight as she twirls and spins and dances in circles.

See her, everywhere. Hear her, and listen to her, and hold on to those sights and sounds. Keep them close and don’t let go.

Stories from Mom

Leaving Town

July 19, 2016 14 Comments

Two days after Olivia’s funeral, Luke and I boarded a plane and left town. In the days immediately after Olivia passed away, we Googled locations, scoured sites for accommodations, and discussed why we wanted to leave town. We didn’t know where we were going yet, but we both knew that we wanted to go. Go somewhere, anywhere. Just go. But what did we want this trip to look like? What did we want to get out of it? It was important that we understood one another’s expectations for this trip, before making any final arrangements.

We both wanted to be somewhere quiet. Somewhere somewhat isolated. We wanted to do nothing, or anything… whatever pleased us most at any given moment. I had visions of riding a bike into a small town each morning to get coffee. Luke dreamed up a list of online classes that were of interest to him.

What seemed important to us both was to be away, to be quiet, and to be gentle on ourselves. To not make too many rules, and go easy on expectations. Be flexible. Do what felt right in the moment.

We’ve since made plans to ‘be away’ for two weeks. We’re in Florida, where it’s hotter than hot, but the sun’s been shining, and the storms give us quite the show each afternoon. We can hear the ocean from our bedroom, and take naps when we want to, and there are endless amounts of beautiful, serene things all around us.

Blog Updates

Olivia Grace’s Obituary

July 14, 2016 No Comments

Olivia Grace Guerrero passed away on Sunday, July 10, 2016 after just 78 days of life. She passed away peacefully, cuddled in the arms of her mom and dad, while in the NICU at Golisano Children’s Hospital in Rochester, NY.

Although short, Olivia’s life was filled with greatness. Great care from her nurses, doctors, and therapists. Great books, great toys, great kisses and cuddles, great fun. Great clothes from her mom. Great music from her dad. And most importantly, great, great love from everyone whose life she touched.

Many who met or knew of Olivia’s story have said, “she knew more love in two months, than most do in a lifetime.” And it’s this that gives her family great comfort.

Olivia is survived by her parents Luke and Whitney (Prior) Guerrero of Pittsford, NY; paternal grandparents Frank and Marie (Gilsenan) Guerrero of Hopewell Junction, NY; maternal grandparents Michael Prior and Jill Marshall of Portland, ME; aunts and uncles Chris and Lauren (Guerrero) Hernandez of Carmel, NY, and Jason and Abbey (Prior) Hutchins of Scarborough, ME; big cousin Wyatt Hutchins of Scarborough, ME; and maternal great-grandparents Richard and Joan (Webber) Marshall of Farmington, ME.

A public funeral service will be held at 2:00PM Friday, July 15 at Church of the Transfiguration, 50 W Bloomfield Rd, Pittsford, NY 14534.

Memorial donations may be made to the Golisano Children’s Hospital’s Neonatal Intensive Care Unit (NICU).

Published on: Miller 1889 | Portland Press Herald | Poughkeepsie Journal

Stories from Mom

Funeral Services and a Celebration

July 12, 2016 2 Comments

We’ve already started to share some of this information, but in order to ensure details reach those who are interested: a funeral service for Olivia will be held at 2:00PM this Friday, July 15, at the Church of the Transfiguration in Pittsford, NY. The address of our church is 50 W Bloomfield Rd., Pittsford, NY 14534.

After the service, we are inviting everyone to join us at Oak Hill Country Club (145 Kilbourn Rd., Rochester, NY 14618) between 3:30-5:30PM for a reception of sorts. There will be drinks, light food, and hopefully nice weather for us all to enjoy as we celebrate and appreciate the beauty of life in Olivia’s honor. We’ve reserved space that includes an indoor area as well as a connecting covered patio (the Oak Room Lounge and the Hill of Fame Patio). Everyone is welcome, and you should feel free to stop by for 5 minutes, or stay for the full two hours. Please note that Oak Hill has a no-jeans dress code.

Although Luke and I kept much of Olivia’s journey private to close family and friends, the funeral service and celebration of life/reception are open to anyone who is interested in attending. By no means should anyone feel obligated to attend, but please know that we’d be honored to have you join us, and feel free to pass along this information to our friends, extended family, and/or acquaintances where it feels appropriate.

In a similar light, we’ve removed the password from all prior posts. Now that Olivia has passed on, we feel it’s more appropriate to open up her whole story to anyone who stumbles upon it.

Information on Olivia’s services will make its way to print tomorrow (Wednesday) in the Rochester D&C, the Poughkeepsie Journal, and the Portland Press Herald.

Memorial donations may be made to the Golisano Children’s Hospital’s Neonatal Intensive Care Unit (NICU).

Stories from Dad

Olivia’s Final Medical Story

July 11, 2016 7 Comments

Yesterday we shared the passing of our beloved daughter. Today, we want to share a little bit more behind her story.

On Tuesday, Olivia went for a muscle biopsy. Results from our recent advanced genetic screening found a “variant of unknown significance” in her TTN gene, which is responsible for the Titin protein in our bodies. Mutations on this gene could have easily explained her condition, since the Titin protein plays such an important role in how our muscles function. However, since the science of DNA is still developing and this specific mutation was never before seen, a biopsy was supposed to provide the physical evidence needed to confirm that mutation was the cause of her condition.

Instead, what we found was Olivia suffered from a rare form of Spinal Muscular Atrophy (SMA). SMA is actually a fairly common genetic diagnosis, but Olivia had what is called the “non-5q” variety. Non-5q refers to the fact that it’s caused by mutations outside of the common SMA-causing genes (chromosome 5, section q). This variety is very rare, hence the inability to diagnose it clinically or with our previous advanced testing. However, once they got a look at her muscle tissue, the diagnosis came in quickly.

The Wikipedia page for SMA is useful, but it doesn’t describe the non-5q branch at all. Her core team gave us this paper in Neurology which provided a helpful summary (going to work on getting a complete copy for here). In short, its prognosis is fatal and the life expectancy of infant onset is even poorer than SMA type 1.

We never confirmed if the TTN gene mutation also impacted Olivia. Her tissue sample was too atrophied by SMA to be conclusive. Also, systematically speaking, nerve firing causes muscle movement, so whether her muscles were healthy or unhealthy (from a TTN mutation) without SMA, didn’t matter much for the prognosis, because SMA affects the nerves leading from the spine to muscles. Our Titin explorations were looking at issues with the proteins forming the muscles directly, but in this case, they weren’t getting the full signals from the brain due to SMA.

Despite all this, we still have one test pending. While we know she had SMA and we know it’s non-5q, we don’t yet know what gene caused it and how/if it was inherited. To help us figure this out and also help our family planning all three of us had blood drawn on Friday for a whole exome sequence. Results will take a few months to be processed. We hope this data will also help future cases of her disease be diagnosed faster too.

In the end, while devastated with her prognosis, we were relieved to have a concrete diagnosis. Her case riddled so many medical professionals and labs that we worried we might be forever stuck with unanswered questions. As Dr. P said to us, her final gift to us was to let us know what she needed. She did that and she’s still a pink zebra.

Stories from Mom

Monday Morning

July 11, 2016 14 Comments

Yesterday afternoon, Luke and I drove home from the hospital with a trunk full of Olivia’s belongings. We came home and took a nap. We sat on the back deck, and made a toast to Olivia. We picked up the house, cooked dinner, and watched a movie. I can’t say those are the things we thought we would do after losing our daughter, but those are the things we did. We drove with the windows down, wanting to feel the outside air, and appreciate life. We watched two dragonflies buzz around our back deck, reminding us of the line from my favorite Olivia book about ladybugs who didn’t fly away.

We cried some, and talked a lot, as we thought about Olivia. I laughed out loud while we ate dinner, thinking how silly she looked when she smiled. And then I cried, reading sweet comments on yesterday’s post, or pouring in via text and email.

It’s been almost one full day since she passed. Almost.

And the feelings we’ve felt so far are pretty indescribable. The whole situation seems surreal. There is no textbook on how to grieve, no roadmap for loss. And that’s become pretty apparent to us. Before she passed, we spent weeks imagining what we would feel like afterwards. What would life be like without her? What would we be like? Would we ever be okay, or would we be forever bitter? Would we go back to “life before Olivia”, or would we change directions, for good?

Luke and I are okay.

Our grief will last a lifetime, I’m sure, but we’re okay. And we want you – our family, our friends – to know that.

We probably won’t write here for too long, but there are certainly a few more stories we want to share. In the next coming days, or coming weeks, we’ll share more information on Olivia’s condition, what we learned about her this past week. We’ll share pictures from her visits with family, and stories from her favorite nurses, and I have to assume we’ll share our thoughts on grief too.

Daily Rounds

78 Days Old: Gone to Heaven

July 10, 2016 30 Comments

This afternoon we said goodbye to our sweet, sweet Olivia, as she began her next big adventure: a journey to heaven.

Her passing was peaceful, comfortable, and cozy, as she spent her last minutes cuddled in our arms. Yesterday she was held all day by family, and her final night and morning were spent playing, holding, and visiting with her favorite nurses.

We’ll have more on funeral services, photos, stories from mom and dad etc. later.

Stories from Mom

Olivia Goes Outside

July 8, 2016 14 Comments

Earlier this week we shared that Olivia went on a few big adventures last weekend, making her way outside for the very first time! We visited the gardens, picked some flowers, and went for a few long strolls. We walked and talked and sat on the benches as a family, and obviously took countless pictures and videos to capture our trips.

Overall, we’re telling ourselves that Olivia loved it, seeing the trees and the sun and the blue sky. Feeling the warmth of the sun and the wind on her face. She kind of hated the wind, and cried every time we went over big bumps, but all in all she enjoy it.

Daily Rounds

73 & 74 Days Old: Muscle Biopsy

July 6, 2016 7 Comments

Yesterday morning Luke and I arrived at the hospital at 6AM. Olivia’s muscle biopsy was scheduled for “first case”, which is set to start at 6:30AM. Prior to her being called to the operating room , we had brief visits from a surgical resident, and an anesthesiologist resident. Both provided us with an overview of what their teams would be doing, and were prepared to answer any questions we had about the procedure.

She was eventually “called” down to the OR just before 7:00AM.

Transporting a baby from the NICU to anywhere else in the hospital is a bit complicated, especially when the baby is ventilated. We knew this from Olivia’s prior trips downstairs. Once for an MRI, another time for the HIDA scan. The transport consisted of her nurse, a respiratory technician, a NICU fellow, and the anesthesiologist resident. Luke and I were able to travel downstairs with Olivia and the team, but had to say our goodbyes just inside the surgical waiting room.

Thankfully, I found saying bye far less traumatic and emotionally draining than I had anticipated. A quick kiss and a squeeze and we were off.

The procedure was pretty quick, and went well. Taking the muscle sample was met with no complications, and Olivia had no negative reactions to the anesthesia. The fact that she would be going under anesthesia was more risky than the procedure itself, because people with myopathies can experience a range of adverse reactions to certain anesthetic drugs used during surgery. Certain ones can cause potentially fatal reactions, one being malignant hyperthermia, which refers to a dangerously high increase in body temperature.

The pediatric anesthesiologists were aware of this potential complication, so they took a series of specific precautions designed to (1) mitigate the likelihood of it occurring and (2) prepare the room should it occur.

But that didn’t happen, and the procedure went fine, and the tissue sample was “checked in” to the hospital’s pathology department yesterday… so now all we do is wait for results. We’ve been told to expect a turnaround time of anywhere from 2-3 days, to 2 weeks, so we are once again planning to practice being patient.

After the procedure, Olivia returned to her room wide awake and wiggly. Not the sedated and sore picture that we had expected!

The recovery from the procedure is minimal. She has an incision on her left upper thigh, but the list of things to avoid is short. No baths for 3-5 days. No physical therapy for 2-4 weeks. She isn’t on any pain medication, and the team doesn’t expect her leg to bother her much. She’s still kicking and stretching it out, and we’ve been touching and lifting it to change diapers, positions, etc. without much fuss.

She slept quite a bit yesterday, but besides that, she’s pretty much back to her usual self.

Today we did start her 2 month vaccines, which will be given in a series of 3 shots, spaced out over 6 days. She barely flinched when she received the first shot, and hasn’t cried or fussed since, but we’re now on the watch out for a cranky baby!

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