“I didn’t know my purpose in life before her” | Local 4-month-old continues fight after RSV diagnosis

The love I have for Ivy is forever, no matter the outcome. I didn’t know my purpose in life before her but I do now. As I sit amongst the chaos of all the wires and alarming monitors, I just wait. I know I have nothing left to give but time and in that, I ask God to show me how to live obediently. In His way & His timing, let Ivy’s story bring light and hope to others.

LIVINGSTON — At just four months old, Ivy Irene has experienced a life that is nearly overwhelming.

Born on September 11, 2023, she has been fighting for her life ever since. In the weeks that followed her birth, she has undergone treatments in the NICU, operating room, PICU, and CVICU. Currently, she is undergoing an intensive 21-day course of antibiotics.

She’s navigating this challenging journey with her “tribe” – an online community comprised of followers from around the world who are accompanying her and her mom, Sydney, on this path of unknowns.

September 11, 2023

Ivy was born on September 11 at only 37 weeks, a preemie facing multiple challenges. Diagnosed with Down Syndrome, a complete AV canal defect, and Tetrology of Fallot affecting blood flow through her heart, Ivy’s early days were marked by significant medical issues.

Her initial seven weeks in this world were spent in the NICU at Woman’s Hospital in Baton Rouge, where dedicated medical professionals addressed her complex health conditions. During this time, Ivy received crucial support, including oxygen assistance and assistance with feeding, in preparation for her first surgery on October 12, which involved the placement of a g-tube.

Despite the initial hurdles, there was a positive turn in Ivy’s journey. After spending 47 days in the hospital, Ivy was finally able to go home on October 28 – she was happy, healthy, and breathing on her own.

“Her status rapidly declined”

After being home for a few weeks, Ivy’s health took a downturn. On December 13, she was admitted to the PICU at Our Lady of the Lake Children’s Hospital, where she received a diagnosis of Respiratory Syncytial Virus (RSV). Initially, Ivy underwent treatments, including oxygen support, but her condition deteriorated.

On December 15, due to worsening conditions and the possibility of cardiac interventions, doctors transported Ivy to Ochsner Children’s Hospital in New Orleans by helicopter. In the Pediatric Cardiovascular Intensive Care Unit at Children’s, her health rapidly declined even further.

“Upon arrival, she was hypoxic and in respiratory distress leading to intubation,” Sydney Sanders posted on the All About Ivy Facebook page. Two days later she was placed on VA-ECMO due to poor ventilation for eight days.

During those eight days, Ivy developed Disseminated Intravascular Coagulation (DIC), a rare and serious condition causing abnormal blood clotting throughout the body, and encephalitis, an inflammation of the brain. Sanders noted that Ivy began experiencing seizures after a procedure on December 26. A few days later, Ivy’s brain MRI revealed severe and irreversible trauma due to bacterial meningoencephalitis.

“Grateful for all the love and support”

On January 6, Ivy underwent extubation, a positive step in her recovery. However, she still requires oxygen, which is now administered through a nasal tube. Additionally, Ivy remains on a 21-day course of antibiotics. Despite the challenges, there is encouraging progress, and she continues to “improve daily.” Although there is a long road to recovery ahead, Ivy’s positive trajectory offers hope for her ongoing healing.

“Ivy and I are so grateful for all the love and support we have received,” Sydney told UWK. “Our community has really stepped up during this difficult time.”

With all of her ailments, Ivy is now dealing with ischemic mottling to her extremities. The mottling, which is caused when blood flow to tiny vessels under your skin is disrupted, started slowly in her right extremity but quickly moved to all other extremities.

Doctors are treating her with medication and dressing changes at least twice a day. “We have steroids and other medications to help relax her muscles and increase air flow to her lungs. Her work of breathing and ABGs are slowly improving,” Sydney posted on Facebook.

Despite the progress, doctors are planning to possibly re-intubate Ivy Monday night.

“I could let myself be consumed by all the negativity of those MRI results, but instead, I look at what I have today: a child that is still here, one that responds to my voice even if it takes several attempts, or one that softly gasps at my finger when she feels my touch.”

She goes on to say: “The love I have for Ivy is forever, no matter the outcome. I didn’t know my purpose in life before her but I do now. As I sit amongst the chaos of all the wires and alarming monitors, I just wait. I know I have nothing left to give but time and in that, I ask God to show me how to live obediently. In His way & His timing, let Ivy’s story bring light and hope to others.”

How you can help

There are a number of ways you can help Ivy and her family as she continues to heal.

Benefit this weekend

The Livingston Parish community is organizing a Chili Cook Off to help Sydney with medical bills and other expenses. It’s set for Saturday, January 13 at Sheri’s Daiquiris in Livingston (17065 Blackmud Rd., Livingston, LA 70754).

“Through our story, we were given the perfect opportunity to enhance knowledge on respiratory illnesses, particularly RSV and the impact it has on all children,” Sydney told UWK. “This benefit extends far beyond helping ivy and I personally. It has spread worldwide to help and support others in similar situations. They have defined the true definition of a community, and I am so proud to call Livingston my hometown.”

If you’d like to participate in the chili cook-off, you can call 985-415-5776. The cost is $25 per team. You can buy wristbands for $10 to eat. The chili is scheduled to be ready at noon.

There will be a live auction at 2 p.m. (You can contact the group’s Facebook page for info to donate an item).

The event will also include a 50/50 raffle, balloon pull and live music.

T-shirts are also currently available as well. Order here.

All proceeds of the event, cook-off, auction, and t-shirt sales will go to directly to Ivy’s mom, Sydney, to pay for Ivy’s medical care and other needs.

GoFundMe

A GoFundMe was established by one of Sydney’s friends. You can find more about donating here.

Amazon Wish List

An Amazon Wish list has also been setup. You can view some of Ivy’s needs here.

Download the Unfiltered with Kiran app from the Apple App Store and Google Play to stay updated on the latest news across the Capital area. 

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