Pray for Gracelyn Webb
On February 13, 2020, Gracelyn Nicole Webb was brought into this world to the excitement and unending love of her parents, Austin and Jamie. Her list of loving extended family is long and consists of grandparents, great grandparents, aunts, uncles, and family "by the heart". Gracelyn was born with Congenital Heart Disease (CHD) . She was diagnosed with a form of CHD called Double Outlet Right Ventricle where Gracelyn 's tiny aorta and pulmonary arteries both came down into the right ventricle of the heart. In addition to both arteries coming into the right ventricle, they also sit on the wrong sides of each other. Additionally, we were aware prior to Gracelyn's birth that she had a Ventricular Septal Defect (VSD) - a hole in her heart. We knew that Gracelyn would be transported to Egleston Children’s Hospital in Atlanta within a day of her birth to undergo open heart surgery but nothing could have prepared Gracelyn’s parents and extended family for what was to come.
WHY A GO FUND ME? This GoFundMe is being set up to provide monetary support to Gracelyn's parents. The funds will go directly to them to cover their bills, food and any out of pocket expenses they encounter so that they can focus their attention fully on their daughter. As hourly employees neither parent has income coming in and are worried about surviving the financial crisis with all of their time being spent at the hospital fighting for their little girl. We are asking you to help them fight for Gracelyn.
GRACELYN'S FIRST SURGERY: On February 19th, 2020, at a mere six days old and at a teeny seven pounds sweet Gracelyn underwent her first open heart surgery. The surgery was grueling and lasted approximately 12 hours. At first it seemed that everything was going well. Reports from the operating room were promising. We learned within a few hours of surgery starting that it was halfway done with the VSD (hole in her heart) patched and Gracelyn's aorta and pulmonary artery separated. The next step was to reconnect the aorta and pulmonary arteries in the proper position (an "arterial switch"). Gathered together we waited for word from the OR. Our family prayed, hoped, waited and our emotions went from moments of joy to sadness, from hope to desperation and fear. Time moved slowly and still we waited and waited. Hours later we received the next update from the OR. Gracelyn had multiple VSDs and the surgeon was working to close them. We were shocked but optimistic and thankful that Gracelyn was holding strong. Multiple holes led us to believe there was maybe 5 or so but we were wrong. When surgery ended in the mid-evening Gracelyn's amazing and determined surgeon came to speak with our family.
WORDS CHANGE EVERYTHING: With a series of gentle but honest words Gracelyn's surgeon delivered news that no parent should ever have to hear. Gracelyn's little heart had an "uncountable number" of holes. The surgeon said that no one at Egleston had ever seen a heart like Gracelyn's... literally! All the testing never discovered what the surgeon encountered when she first entered the operating room. It was like having one patient who's anatomy you understand and then arriving in the operating room and discovering a totally different person. The surgeon described Gracelyn's heart as being similar to swiss cheese that allows blood to flow between the chambers. The surgeon had thought that she had closed the massive VSD (hole) and proceeded on to perform the arterial switch only to discover that something was wrong. Gracelyn heart was not responding as it should and she would not transition off the bypass machine. It was then that the surgeon discovered that the VSD was not patched. From one view it appeared to be closed but as she explored the chambers of Gracelyn's tiny heart it became clear that it wasn't. I describe her heart like a house of mirrors. In one view the VSD appears closed and then from another angle it isn't. The countless holes make closing the massive VSD impossible. Surgery concluded with Gracelyn transitioning from the bypass machine to ECMO (a machine that functions as her heart and lungs). Her heart was flatline. The purpose of ECMO is to allow Gracelyn's heart time to heal and Gracelyn was expected to remain on ECMO for 1-2 days.
IT'S NOT DONE: Immediately following Gracelyn's first surgery she was taken to imaging to see what was going on. The surgeon wasn't comfortable and wanted to see if there was an issue with the coronary arteries which is common with Arterial Switch surgery. It was discovered that Gracelyn was bleeding too much. The surgeon cleared the blood from Gracelyn's chest while in imaging as she fought to discover where it was coming from. More images were taken and the surgeon returned to us to provide an update. Exhausted yet determined the surgeon advised the now larger group of gathered family that Gracelyn needed to return to the OR immediately to get her bleeding under control. SHE WAS BEYOND EXHAUSTED BUT WOULD NOT GIVE UP. Her words were clear.. (paraphrasing) "I have to control the bleeding and I think there is an issue with one of the coronary arteries being kinked. The other coronary artery may be stretched. I have time on the coronary arteries so if I can control the bleeding then I will stop the surgery, sleep for three hours and then return to the operating room to work on the coronary arteries. I am exhausted." She told us that if we didn't hear from her within two hours that it mean that she couldn't control the bleeding and was "going for it" by attempting to repair the coronary arteries too. Otherwise, she would stop, rest and then press on.
GRACELYN GOES BACK INTO SURGERY: At 1:00 a.m. on February 20th Gracelyn's second surgery began. A fight to control the bleeding from the first surgery was underway. We waited and the call finally came. The bleeding had subsided but the surgeon was pressing on. Hours passed. We paced, waited, cried, hoped and prayed. Gracelyn's surgeon was super human. Honestly, her determination was unbelieveable. At 5:50 a.m., surgery ended. The surgeon met with our family. Now just the parents and grandparents we listened to Gracelyn's surgeon recount what she found, what she faced and what she expected.
Gracelyn was on ECMO and dialysis. She was flatlined. Her heart was weaker now than it was after the first surgery. The surgeon felt "confident" after Gracelyn's first surgery but her confidence had now changed to "hopeful." She had tried to place a pulmonary band on Gracelyn pulonary artery but it failed. The massive hole cannot be fixed in it's current anatomical state. Gracelyn needs to remain on ECMO for up to a week. After that, the doctors will try to transition her off of ECMO and then again attempt again to place a pulmonary band to levelize the pressure in her heart and buy her time to build muscle which may close some of the small holes that are preventing the large hole from being closed. We asked about the possibility of a heart transplant and she advised she would send the transplant team to speak with us. We met with them today. At this time, no one is giving up on Gracelyn's little heart. She needs time on ECMO to allow her heart, lungs and kidneys to recover and rest.
THANK YOU: There are so many people praying for sweet Gracelyn. Please keep praying. If you can donate anything to assist her parents, please know that is appreciated beyond words. Every dollar helps. If you cannot then please know that praying is enough. Pray for Gracelyn, for her doctors, for her parents, for God's grace and that Gracelyn's heart is strong enough to transition off of ECMO. Most of all thank you from Gracelyn's parents and her extended family for standing by us all and fighting for Gracelyn.
#prayforgracelyn
