Welcome to our website. We initially created this site to keep our friends and family updated on our daughter, Gabrielle Faith. She was born on June 9th, 2009 with Hypoplastic Left Heart Syndrome (HLHS). We are Teri, Big Ethan, Little Ethan, Thomas, Marissa, Gabrielle and Max.
At our typical 20 week prenatal ultrasound for our 4th child, our OB and radiologist informed us that the left side of our daughter’s heart did not develop. We were thrown into the midst of medical terms. We researched and interviewed 3 different hospitals and surgeons. Our entire life was turned upside down. Big Ethan was out of work and we didn’t have any means to care for a sick child nor were we prepared emotionally for what was in store. Our faith has carried us through and we are incredibly blessed and honored to be parents of 5 wonderful children.
Why 26 Chambers?
Because Gabi only has 2 chambers in her heart, added up- we have a total of 26 heart chambers in our family. When we started this blog in 2009, our blessed Maxwell hadn’t graced our presence yet, so it started out as 22 chambers.
The Gabrielle Updates page will keep you updated specifically on Gabi’s progress.
The Family page is so much more. It is my brain dump. It is my therapy. It is things that work and things that don’t work as a mom. It is documentation that I actually survived these days but also proof of all my blessings. It is reviews of local places, books, and favorite blogs.
The West 3 page explains itself.
Ethan and I were married in 2000 and the path we are on is not at all what I thought it would be. From these lessons, I have learned to surrender the struggle of controlling the things I once thought I had control over. We have had the pleasure of watching our lifeless daughter fight to regain her breath. We have had the pleasure of applying to and asking for help from food pantries and we have had the pleasure of making difficult choices like walking away from our home when our bank account was drained and we were faced with 3 little children and another sick one on the way. We have let go of any pride we once had. We have let go of all expectations of people and do not judge others anymore because God has shown us and used us as examples to pull it together and keep fighting because there is no other choice. We choose to be happy everyday and we choose to love till it hurts. The sun will shine again and those feelings are quite liberating. Ethan is gainfully employed now and once again dreaming big dreams. We rent a tiny house in the most incredible community of Arlington Heights, IL and our life is blessed beyond words.
We struggle with extended family and we struggle with life’s hardships- depression, alcoholics, craziness and selfishness. But through it all- we smile everyday.
Gabrielle’s care is at Children’s Hospital of Wisconsin in Milwaukee and she is cared for by some amazing doctors including: Dr. Tweddle, the infant cardiac surgeon, Dr. Ghanayem, the cardiac critical care doc, Dr. Joe Cava, our amazing cardioliogist and many others that would be too long to list. CHW has an incredible nursing staff and support team. Gabi couldn’t be in better hands. She had her Norwood procedure performed on June 15th and unfortunately came out of surgery on ECMO (life support). She stayed on that for 3 days until her heart and lungs thankfully recovered and were able to work again. She had many complications including a placement of a VP shunt from hydrocephelus and a G-tube due to feeding issues. She didn’t walk until she was 2 1/2 years old, still cannot eat by mouth and the list of her physical weaknesses are quite long. The Glenn surgery was performed on December 17th, 2009 and she miraculously was able to come home to her family on Christmas Eve.
The fontan, the third heart surgery of the series of 3, was performed by Dr. Tweddle on July 9th, 2012 and she was home in 11 days. This surgery was horrible… it just plain sucked. But she got through and is my fantastic rock star!!
She continues to fight everyday. She has taught us all so much in her few years of life and I can’t wait to see what her future holds.
“I have found the paradox, that if you love until it hurts, there can be no more hurt, only more love.” Mother Teresa.