Jade Nesselhauf Jade and her journey

First post: Mar 18, 2016 Latest post: Mar 17, 2017
Jade's journey started way before she was born. When I was 20 weeks pregnant, my husband Joe and I went in for what we thought would be a routine ultrasound. During the test, doctors discovered our baby was measuring very small. By small, she was only in the third percentile. They were unable to get clear pictures of her heart, so they referred us to Mercy’s Prenatal Center for more tests.

We’ll never forget November 13, 2015.That’s the day doctors discovered our little peanut had a congenital heart defect. In order for them to rule out any chromosomal issues I underwent an amniocentesis. This was by far the hardest day of our lives…or so we thought. We waited almost two weeks to get all the results back—hoping and praying around the clock that our baby was not facing any other health complications. Luckily, we found out Jade tested negative for all chromosomal issues. This provided some relief, but we knew we had a long way to go.

Doctors later determined that along with the congenital heart defect, the blood flow from the placenta was not good and attributed that issue to her lack of growth. The weekly monitoring appointments and looming unknown future was hard to bear and comprehend. When you find out you’re pregnant you celebrate each day and see your belly growing—you don’t think you’ll be a mom who has complications—until it happens to you. Then with each movement or feeling you wonder if something is about to go wrong—or if a test will come back with the results you can’t fathom hearing.

When I was admitted to the hospital December 28—doctors and nurses let me know that if I delivered, Jade would be too small for her heart surgery and would not be able to survive so I was sent home. Those words felt like a ton of bricks crashing down on my chest. Luckily, our daughter continued to amaze us and kept growing week by week. She was moving all the time and making sure we knew she was going to fight to stay alive.

By February, she was measuring big enough and had crossed the threshold of 32 weeks so I was admitted to the hospital so her heart could be monitored closely. Then, February 25… one day shy of being35 weeks along, Jade’s story truly began. Doctors made the call that in two hours they would perform a c-section and our sweet baby girl would enter this world. It all happened so fast. I remember getting wheeled into the delivery room with 20 nurses and doctors ready to help Jade in any way they could. Minutes later she was crying the sweetest cry I have ever heard. Joe cut the cord and we gave her a bunch of kisses before she was whisked away to the NICU. Born at only 2.9 pounds and 15.25 inches, she’s been resilient since she entered this world. While we knew there was a long road ahead, it was comforting to know she was able to breath on her own because her lungs had developed.

Doctors diagnosed our baby girl with Pulmonary Atresia with Ventricular Septum Defect, listed under Tetrology of Fallot. Only one in every 10,000 babies are born with this rare heart condition. Babies born with this condition oftentimes have a bluish skin color, because their blood doesn’t carry enough oxygen, they have trouble breathing and eating, and are extremely sleepy. Because of her lack of ductal development, Jade was immediately put on special medication to keep the blood flowing. Unfortunately, the medication caused apnea so she was placed on a ventilator. During that time we went on a roller coaster ride of trying to get her medicine right and keep her heart duct open.

Unlike most parents who get to hold their babies right away and head home a few days after delivery, we had to wait a week to hold our little girl. You look at this tiny three pound baby—and feel more love than you ever thought imaginable. While we held her, several nurses were on standby—machines were beeping, the moment was something we’ll remember for the rest of our lives. Despite Jade’s journey—she is perfect to us. This is our family. We have no choice but to have faith that Jade will overcome the obstacles before her and be able to live and enjoy all that life has to offer.

After two weeks in Mercy’s NICU, Jade was transported by ambulance to Cardinal Glennon so that her surgeon could be close by should she need emergency surgery. After checking her, a stint procedure was planned to help keep her duct open and get her off all the medicine. The procedure took six long, agonizing hours—the wait and anticipation was unbearable. You think of your tiny daughter on an operating table—your mind and heart race hoping and praying that God is guiding the surgeon’s hands and that your baby makes it through. Two stints were successfully put in place, but there were complications with the third. Jade was extremely sick and puffy. It broke our hearts to see her like that and it was devastating to hear that the procedure did not go as planned. As a mother, I would give anything—even my own heart—to get her through this nightmare. That night Joe and I were awaken by nurses telling us that Jade's heart was not beating properly. They had given her three doses of a medicine that should have helped restart her heart to allow it to start beating appropriately. However, her heart wouldn't cooperate and they started to wheel in a machine to shock her heart. Joe and I prayed and prayed and all of a sudden Joe told the nurses to wait because he saw her heart rate going down. And sure enough her heart rate was going back to normal. They were within seconds of shocking her heart and it was truly the scariest moment of our lives. God was there to help our little girl.

Jade was born 22 days ago. It’s been eight days since the procedure and our sweet girl continues to exude more bravery than imaginable for a three pound person. Although she’s still on medications and on a ventilator with more surgeries are on the horizon—we feel the support and love of friends, family and complete strangers. The well wishes, prayers and positive thoughts mean more than you’ll ever know. Please continue to Pray that Jade overcomes all the obstacles before her and that she gets to come home soon. It’s heartbreaking to think our baby girl still hasn’t been outside to breathe fresh air. She still hasn’t been home with her Mommy and Daddy. She’s spent every moment of her existence under close observation in a NICU.

When Jade gains more weight and gets stronger she will undergo open heart surgery and a shunt will be placed in her heart to replace the duct doctors are trying to keep open. After her recovery, she will finally (God willing) get to come home and be on a few medications until she is big enough for a full heart repair. She needs to be at least 12 pounds for that surgery to happen.

Each day is a waiting game—each hour is filled with worry, wonder and prayers. We sit beside her incubator oftentimes feeling helpless—watching in awe as she moves while her fragile body is covered in cords. She inspires us to be strong. She shows us what it means not to give up. She’s our life. This is something no parent should ever have to experience, but something that is our reality.

Thank you from the bottom of our hearts (and Jade’s, too!) for your support and prayers during this difficult time. We will continue to update this page as often as we can so you can follow Jade’s journey.

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