Jaxson’s Story

Site created on July 30, 2020

Our son Jaxson was born 7/26/20 at 31 weeks. I was supposed to be induced 9/21 at 39 weeks at MUSC in Charleston, South Carolina due to him having a congenital heart defect called Tetralogy of Fallot with pulmonary atresia which was discovered when I was 24 weeks pregnant. Unfortunately the weekend of 7/26 I ended up having a severe headache that made me feel the need to check in at the OB triage at our local hospital. When we got there, my blood pressure was 255/125 which is considered stroke zone. My OB told me she was surprised I hadn't already had a seizure at that point. I had developed severe preeclampsia/borderline HELLP Syndrome. They spent the next few hours giving me medicine to try to get my blood pressure lowered so they didn’t have to deliver Jax. Unfortunately my body didn’t want to cooperate so around 12:30pm we were on our way to the OR for an emergency C-Section and at 1:02pm Jaxson was born. We got to see him for just a few seconds before he was rushed to the NICU for tests and to get checked out. I wasn't able to see him again until 24 hours later because I was on magnesium for my preeclampsia. Magnesium makes you feel like complete garbage, shaky and sick. Fortunately, Cody was able to go visit him and I had access to a camera system by Jax's bed. Sometime after that within the next day or two, Jax's blood pressure dropped and caused some damage to his kidneys. One of the issues we had and are still having is trying to heal his kidneys; the medicine he’s on for his heart called Prostaglandins prevent the kidneys from being able to heal. Fortunately they were able to lower the dosage enough to keep his heart stable but allow the kidneys to heal a little at a time. He’s currently on a ventilator also due to the prostaglandins; they make babies tired and forget to breathe. As of right now the focus is to get him growing and big enough to be transferred to MUSC for surgery to repair his heart. We’ve got months left on this journey to get him healthy and home.

Newest Update

Journal entry by Micaela Ziebell

We finally picked up Jax’s ashes this morning from the funeral home. We are headed home to Greenville and stopped to get a picture of his urn with his Grandma Cindy’s headstone. Since we’re moving back to MN, it was good to say goodbye to her for now too. Not the way we wanted to introduce them but I’m glad we got that picture.

Jax’s memorial service here in South Carolina will be this Saturday, November 14th at 2pm at Set Free Church in Easley, SC. 
Patients and caregivers love hearing from you; add a comment to show your support.

Comments Hide comments

Help Jaxson Stay Connected to Family and Friends

A $30 donation to CaringBridge powers Jaxson's site for one month. Will you make a gift to help ensure that this site stays online for them and for you?

Show Your Support

See the Ways to Help page to get even more involved.