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Mar 8, 2018 Latest post:
3 hours ago
Grace Elizabeth Jones arrived at 5:10pm on March 7. She was born weighing 8lbs 13oz and measuring 21.5 inches long! Gracie is brave, tough, beautiful, and an incredible blessing full of God’s love.
This summer, we were thrilled to learn we were expecting a little sibling for Josie! At our first trimester ultrasound screen some abnormalities led us to do to further testing. In September, 14 weeks into our pregnancy, Gracie was diagnosed with a rare, life-threatening birth defect called a congenital diaphragmatic hernia (CDH). Ultrasound showed a hole in Gracie’s diaphragm. This hole allowed her abdominal organs to push up into her chest cavity. With additional organs in the thorax, Gracie's chest has not had room for adequate lung growth.
Gracie is a resilient and brave fighter who has endured and overcome many obstacles. Grace was put on ECMO life support four hours after she was born. ECMO is a heart and lung bypass system that allows blood to be oxygenated outside the body by machine. One week after her birth her diaphragmatic hernia was surgically repaired and Gracie came off ECMO two days later. Gracie continued to make wonderful progress tolerating tube feedings, having her breathing tube removed, and loving snuggle time.
Just before Gracie turned one month old she had to have a breathing tube reinserted. Her doctors determined the patch repairing her diaphragm had broken loose and was allowing her intestines to push up on her lungs causing respiratory distress.
On May 7, her two month birthday, Gracie had a second surgery to repair her patch. She also had a G-tube feeding tube and a Broviac central line inserted. Gracie handled the surgery like a champ and is slowly improving everyday. Our brave girl has also overcome a pleural effusion, multiple ET tube and PICC line changes, pneumonia, multiple pneumothoraxes, and pulmonary hypertension.
Gracie excelled for nearly a month off the ventilator, breathing with the support of CPAP and NAVA. During this time we saw Gracie’s vibrant, joyful personality come out. Gracie showed off endlesss smiles and loved playtime.
On June 4, Gracie clearly wasn’t feeling well and began vomiting all her feeds. An X-ray showed her patch had failed and her bowels were up in her chest. On June 5, Gracie went to the OR for an emergency surgery, her third hernia repair. We are cautiously optimistic and hopeful the third time is the charm!!!
Gracie remains in the NICU continuing to battle dangerously high pressures associated with pulmonary hypertension. She is preparing for open heart surgery in September to close the atrial septal defect (ASD) that may be contributing to her pulmonary hypertension and lung disease.
Each day with Gracie is a blessing. We are taking one day at a time, while never forgetting where we’ve come from and all we’ve already overcome, and always remembering where we are going: home to Josie and Gracie’s house!
We are grateful for the guidance and expertise of the incredible providers, especially Gracie’s guardian angel nurses, at Children's Hospital Minneapolis.
Thank you to our dear family and friends for visiting Gracie's CaringBridge site and for your unwavering support, love, and prayers. We appreciate all your messages of support! Please continue to check back here for updates on Gracie's progress.