Brooks’s Story

Site created on May 8, 2023

Hi family and friends. We are so grateful that you're here for us - literally, on this site, and energetically with love, prayers, and positive thoughts. Sweet baby Brooks made his debut earth-side on April 26 - 3.5 months early. It has been a roller coaster of medical interventions and emotions since. The uncertainty is much easier to bear when the certainty of love and support from our community is here. From the bottom of our hearts, thank you. Our intention is to update this site with news about Brooks's journey in the NICU. His doctors have prepared us for a 100-day stay, so we all have a long road ahead of us. 

The burdens of life interrupted by a NICU journey are many. Several have asked what you can do to help relieve some of them. We’re grateful to be sustained by the love + positive thoughts flowing our way, and the nourishing care of the Barclays right now. If you feel so inclined, we would greatly appreciate donations to Brooks’ PayPal (on the "Ways to Help" tab). These would be used toward support for Brooks in the near + long term, ensuring our own self-care as we continue to visit him every day, and showing our gratitude to his amazing team of doctors and nurses.

We love the idea of meal train support, but the erratic nature of our NICU life doesn’t pair well with scheduled, in-person food drop-offs. We’ve created a meal train donation with Golden Roots Kitchen, an organic prepared meal service that will allow us to order and schedule food deliveries on our own timeline. Gift cards can be purchased on the "Ways to Help" tab. If you choose to do so, please share the redemption code with us. Thank you for helping us stay nourished and well as we pour all of our energy, love, and strength into our baby's healing in the coming months. 

NOTE: Donations to Caring Bridge with a “Tribute” to Brooks go to the Caring Bridge organization and not to us. It is a wonderful organization worthy of your donations but we wanted to clarify that since it has been confusing to some. Go to “Ways to Help” tab to donate directly to us.

Finally, in the Planner section you can sign up to spend time with our dog Maggie, who doesn’t get the daily dog park visits that she used to these days. She is a social pup, and would love to spend time with any dogs or humans!

We love you, 
Jessie, Shane, Brooks, and Maggie

Newest Update

Journal entry by Jessie Barclay

Hello! I’ve missed writing and sharing with you all weekly. We quickly shifted into newborn gear as soon as we left the hospital, which is a speed that feels like there is little room left for anything outside of feeding, playing, sleeping, and never-ending laundry. But we are relishing it all! 

It’s been nearly five months since Brooks graduated from the NICU. It feels incomprehensible to think that we’ve been home only slightly longer than the amount of time we spent in the hospital, even though I was right there, living through all of it. So much has happened in these last five months that it makes my brain sad to think about all that we missed out on while Brooks lived in an isolet for 125 days. But then my heart pulls me back with the lifebuoy of gratitude for all that we have now. The 14.5 lbs (!) of cheeks, double chins, dimples, mohawk hair, and blue eyes. The nearly breastfeeding-only routine we’ve transitioned to after so many months of grueling pumping, milk-fortifying, and parts-washing. The smiles this beautiful baby dishes out so generously and the little laugh he’s found. The middle-of-the night cuddles in this new sleep regression phase we’ve hit after the 9+ hours we had become accustomed to. I am so thankful for every waking and sleeping minute with my miracle baby.

And that said, these past five months have been really hard. We stayed at Shane’s parent’s house for a couple of weeks after we were discharged, which was so helpful, especially when Shane traveled to Japan and Korea for work. Once we got home to Santa Cruz, we dove head first into figuring out how to not only keep a baby fed, bathed, well rested, and appropriately stimulated, but ourselves, too! We’ve had help with food delivered from meal trains, both in person and from the company that many contributed to, and it has been a lifesaver for us - thank you!! I’ve had to seriously reexamine and reset my expectations for what I can get done in a single day. 

Shane and I have found that parenthood at this point is equal parts joy and struggle…and they do not cancel each other out. Brooks fills our home with love and immense joy, but parenting is still confounding, overwhelming, frustrating, exhausting, exasperating, and physically + emotionally demanding. It tests our patience and our marriage, and has forced us to reevaluate our standards for ourselves and each other. We are grateful for the individual and couples counseling we did in the years preceding Brooks’s birth because it has certainly helped us navigate these uncharted waters.

Meanwhile, time continues to mock me with its furtive thievery. Every time Brooks wakes up from a nap, he looks so much bigger to me. I pleaded and prayed for him to keep growing, to keep living - dreaming of the day he would be in my arms without a time limit. And now, he feels so big that I find myself wondering how much longer I have where he will fit in my arms just this way as I nurse him to sleep. 

As each week goes by, I find myself working more actively to remember my Mom’s vivacious spirit and loving nature in the way I want to remember her by, not in her current incapacitated state. I call to mind the ease of her smile and laugh, the generosity of her love. And I know she is delighted by her grandson - the name they share, hers as a nickname and his has a middle name, and the bright blue eyes he got from her. But I have to imagine how she would articulate it, how her nose would scrunch up in joy and her head shake in pure wonder. And just so it can feel more real, I say it out loud to Shane so that I don’t forget the tone and intonations of her voice just yet. 

But I have found a hack to the relentless pace of Time! It’s so simple, and yet so hard. And that is - to be present. To resist the urge to cross off one more line item on my List of Aspirations (a To-Do List feels comical at the moment) while he sleeps and, instead, to memorize the beat of his little breaths, the design of the perfect cowlick on the back of his head, the pressure of his five tiny fingers wrapped around my one pointer finger, the flutter of his smile as he dreams. To steep in the magic and wonder of these ordinary moments with my baby in my arms and my mom in my heart. 

2023 was a wild ride of a year. The highs and lows were both so potent. And now, I am so grateful that we seem to be moving into a season and year that is weighted more heavily by high points and milestones than low points and illness. Brooks has breezed through many of his medical follow-up appointments and even been discharged by most of his doctors and specialists! His PDA closed and his heart no longer has to be monitored; his lungs have developed beautifully, he’s off all of his medications, he no longer has to see his pulmonary specialist and his eyesight is developing just as a full-term baby’s would! He sees his physical therapist every four weeks and she is very proud of his strong head control, eye tracking, and ability to reach out and grab his toys with both hands. He is so close to rolling over without any help and sitting up on his own. In the coming months, he will have a hearing check and have surgery on his double hernia - in his testicles and belly-button. We are so proud of this strong and resilient baby who is crossing off milestones despite the odds stacked against him. 

And I am also proud of me, and of us. Of my body, which has endured and healed and held so much; of my heart that breaks but keeps right on beating; of my mind, that has unlocked a whole new capacity for the emotional and logistical load of Motherhood. And of Shane and our partnership that has grown through grief, uncertainty, anger, frustration, and sleep deprivation with the ability to love bigger and communicate better. We’ve intentionally carved out hours each week for our own self-care practices and I am so grateful for both the commitment and reflection. I’ve come to see my body not as a vehicle of betrayal but a source of power and nourishment through my continued yoga practice; as I sing among my song sisters each week, I’m reminded that I hold immeasurable depths of joy and hope, not only fear and trauma; and my breastfeeding journey has shown me that my body is, in fact, a good body and it knows exactly what to do to keep my baby safe, healthy, and growing.

We are looking forward to all that 2024 has in store for our family. We have plans for travel and a bigger home where Brooks would get his own room. But for now, we are so grateful for all that we do have together. 

As we moved through this past holiday season of gift-giving, I had a chance to reflect on all the generosity extended to us over these last 9 months. We have truly been sustained by the support of this community in every form. I want to carry this spirit of generosity forward into this new year. I want to be generous with my attention to Brooks as his little brain develops at lightning speed; with my listening to those around me, especially Shane; and with the grace I extend myself as I continue figuring out the massive and awesome task of Motherhood. 

Thank you for following along in our family’s journey. We love you and hope that 2024 brings us the chance to introduce you to Brooks and hug each one of you in person!!

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