WHAT'S CURRENT

Our beautiful little "Zinnia" was born on March 29th, premature. Her NICU stay was 18 days, and she has continued to thrive. 2022 has been full of surprises both challenging and rewarding. The support provided to us from friends, family, and caring neighbors allowed us to cover most of the expenses associated with our relocation and needs during the most uncertain period of our lives. We are so grateful for this.

After Zinnia was born, we pushed hard to resume our search for a house, and in July, we were able to buy a house and make it our home as our family of 5.

With some challenges with insurance for several months, we finally were able to restart Zinnia's appointments with her new hospital. Although she has been making amazing progress in everything, we were given a diagnosis of hydrocephalus after a few appointments with the neurosurgeon, and Zinnia was identified as a good candidate for ETV -- Endoscopic Third Ventriculostomy-- surgery. This essentially would create a hole, or pathway, in her brain for the cerebrospinal fluid to flow better.

Zinnia had ETV surgery done in December. We are hopeful and prayerful that the surgery will remain successful, as this would mean no need for the placement of a shunt and less likelihood for future brain surgeries.

Thank you all again for your support and prayers.

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ORIGINAL STORY

The Elvers Family
We are the Elvers Family, a family of five: Daddy Joel, Mommy Larissa, two young children, and a new baby on the way.

Our Baby Needs Special Help
Our family was preparing to shop for our very first home. However, a turn of events took place at a routine 20-week ultrasound, when our unborn baby was diagnosed with Spina Bifida (myelomeningocele), a serious birth defect that involves a lesion on the spine. The lesion does not keep the spinal cord in place and allows spinal fluid to leak. This contributes toward our baby's additional diagnosis called hindbrain herniation (Chiari II malformation), a condition in which part of the brain is gradually pulled down and obstructs the flow of fluid between the brain and the spine. This can lead to fluid buildup in the brain called hydrocephalus and typically requires a shunt. Children with spina bifida experience a loss of normal functions in the body in varying degrees, based on the severity of their condition.

Our options for responding to the findings were presented to us: fetal (in-utero) surgery or post-natal surgery, and we pursued learning more about fetal surgery and the different types available to us, as this appears to be the best way to address the spina bifida. This approach can likely reverse hindbrain herniation and prevent further damage from the lesion, reducing the chance of hydrocephalus and the need for a shunt. We learned that we were eligible for surgery, and after serious prayer and deliberation, we decided on a fetoscopic procedure provided by Johns Hopkins Hospital in Maryland. The operation took place on January 25th, 2022.

What This Means for our Family
The decision to undergo surgery for our baby comes with many other changes and uncertainties. It requires us to relocate our family to the vicinity of the hospital, as the risk for preterm labor/delivery and other obstetrical complications are increased following surgery. This warrants constant monitoring through the duration of the surgery, post-surgery recovery, delivery, and post-delivery recovery and care for both mommy and baby. Our baby's estimated due date is May 4th, 2022.

Our first fundraising goal is $15,000.
Relocation itself comes as a financial burden. However, it is not the only expense related to ensuring our baby receives the special care he/she needs, and we expect the need to set additional fundraising goals as we move forward and learn precisely what our baby will need. As it is with most children who have spina bifida, continued treatment and therapies with various specialists are to be expected as our baby grows and develops. In recognizing this, we see that we must humble ourselves to receive the generosity of others in order to build the best life for our little blessing.

There has already been an outpouring of love, support, and prayers as we start this journey. Several family members and friends have taken an initiative to contribute funds toward our circumstances, and we are so grateful for their unsolicited generosity. We hope this fundraiser may reach a broader circle of friends who may be interested in participating in our journey. May God bless everyone who joins us.

Blossoming Zinnia's Spina Bifida Journey

By Joel Elvers

Blossoming Zinnia's Spina Bifida Journey