Our Heart Journey-Cora's Fundraiser

*I've edited our story to leave out hospital names and city names to protect our privacy*

On January 31, 2019 we went to our Anatomy ultrasound at 22 weeks and 6 days. We were so excited to finally be able to see our perfect little girl! But after the ultrasound was over, we were given the news that our baby girl's heart is "abnormal". We were then scheduled for another ultrasound and a Fetal Echo-cardiogram, which is a special ultrasound to get detailed pictures and tones of the baby's heart and measure each part of it. On February 5th, we had the appointment and we were given a diagnosis. It was absolutely soul crushing. We were told that our baby girl has Hypoplastic Left Heart Syndrome (HLHS) and a Congenital Diaphragmatic Hernia (CDH). 

HLHS is when the baby's heart forms abnormally. The left ventricle is under developed, or does not exist at all. The left ventricle's function is to pump oxygenated blood cells to the lungs and body. Without surgery, a baby can not survive. 

CDH is when there is a hole in the diaphragm and the digestive organs can migrate up into the chest. this causes major growth restriction to the lungs and heart. Babies with CDH need surgery to patch the hole. Survival rate for a baby with CDH is 50-80% depending on how severe the CDH is.

On Thursday February 28th we had another ultrasound and fetal Echo at a different hospital, a Children's hospital. Upon finishing these appointments, we then met first with our Pediatric Cardiologist, then our MFM OB doctor. The first thing our cardiologist said to us when we all sat down was that our sweet Cora does NOT have a CDH! We were so shocked! He then explained to us that if she had, the combination of CDH and HLHS would have made her unable to be operated on and she would pass away shortly after birth when her body gave out. Hearing that she only has HLHS was and is such an immense blessing! Our Cora has a chance!

He then went on to explain the series of surgeries and treatment she would be facing through out the rest of her life, most of which pertaining to her first year. Cora will need several different medications straight from birth, she will have a surgical procedure called the Norwood within her first 10 days, then she will be in the ICU for roughly 10 days post surgery, then recover in the hospital for about 2 more weeks. Once released, she will be very closely monitored until her next surgery, the Glenn, at about 3-6 months old. Following the Glenn, she will likely not need another surgery until about age 3, the Fontan. 

After speaking to our Cardiologist, we then met with my MFM OB doctor who explained how the rest of my pregnancy and delivery will go. I will be getting monthly growth ultrasounds, fetal Echo's every 4-6 weeks, and I will have a scheduled induction. Cora will be transferred from the university hospital where I will deliver, to the children's hospital right after birth. As soon as I am stable, they will release me to be able to go be with her. 

Derek and I will be spending a lot of time at the children's hospital to be with our sweet Cora in the first 6+ weeks of her life, including spending nights there.

 The first of my medical bills have started coming in and I'm quickly realizing that we are going to need help. 

Between the gas from driving to the city for my prenatal appointments and then once Cora is born, meals, and of course the surgeries and hospital stay for Cora, I have calculated that we will be needing about $10,000 to keep us above water.

I'm normally not the type of person to ask for help. But through this experience I have come to realize that we are surrounded by friends and family who love and support us and WANT to help our family.

I completely understand that not everyone has the means to help us financially, and that is okay. Your prayers are needed and appreciated still; we are so, so grateful for them!
  • Deborah Fleming 
    • $100 
    • 28 mos
  • Tania Emmy-Nana 
    • $80 
    • 28 mos
  • Evan Rictor 
    • $20 
    • 28 mos
  • Caitlin Green 
    • $50 
    • 29 mos
  • JRock Riffle 
    • $75 
    • 29 mos
See all

Organizer

Shannon Mae Welton 
Organizer
Lake Stevens, WA
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