As many of you know our little girl Parker Faye was diagnosed with a Congenital Heart Defect before she was born. Parker joined the world on December 23, 2019 at a whopping 4 lbs 11oz and was taken straight to the NICU. Doctors were immediately impressed with her and we were on the road to going home. During her second week in the NICU nurses noticed that Parker was breathing a little fast and she was having a hard time gaining weight. After a few tests her cardiologist determined that she would need a surgery to place a band on her pulmonary artery. This is usually a relatively common surgery, but we were terrified for our 2 week old baby to undergo an operation. Parker had her first surgery on January 6th. After several hours, Matt and I were brought back to her room to see her. Shortly after seeing our girl, her health started to decline. The surgeons decided to take her back to the OR for exploratory surgery. During this they were able to identify the problem. Parker had a rare cardiac anomaly called ALCAPA. Her coronary artery was attached to her pulmonary artery instead of her aorta. So when they placed the band on her pulmonary artery it essentially starved the left side of her heart of oxygen. We were very lucky that her surgeons were able to find this when they did. Parker came back out of surgery, but they weren’t able to fix her coronary just yet because she was so small. During that night Parker went into cardiac arrest. Doctors and nurses did compressions and were able to revive her, but the surgeon had to reopen her chest right there in the room to relieve the swelling. Parker’s heart had suffered a massive hit. She was able to recover after some time and we were finally able to bring our girl home. Being at home was scary, as it is for most first time parents, but Parker came with a few extra things like an NG tube for feeding, medication, and oxygen tanks. We were loving our time at home with our girl, but eventually her oxygen started to decrease as we knew it would. We brought her to the hospital where doctors spent 2 weeks trying to figure out what was causing her low oxygen. Finally they decided she would need a cardiac cath if we wanted answers. Parker came back from her cath and was not in the best of shape, she was much sicker than we had thought. Not even an hour later we were told that Parker would need another surgery the following day. This surgery would involve putting her on bypass so surgeons could reconnect her coronary to the correct place. On March 10th Parker was in surgery for what felt like an eternity. After hours and hours we were told that our little girl was very tired because her heart had been working so hard to make up for her coronary being in the wrong place and the damage her heart took after her initial surgery. They decided to bring her out on ECMO or life support and said that her heart just needed to rest a bit. When we heard those words I almost lost hope. But after 3 long days the surgeons said she was ready to be taken off ECMO and that her heart had made a miraculous recovery. Parker was slowly getting stronger when she developed pneumonia and then a very serious blood infection. The infection made her very sick, but her amazing team of doctors and nurses discovered it immediately and acted fast. We were told she would have to stay in the hospital for the duration of her antibiotics, 6 more weeks. Throughout the next 5 weeks Parker was making big moves for a girl who endured so much. She was rolling to her side, reaching for toys, and finding her sweet little voice. Then she took another turn. Doctors saw that she was not herself and was unable to keep her heart rate, breathing, or oxygen stable. We had several more scary moments which were extremely difficult when only one parent could be with her at a time. Parker had another cardiac cath and doctors found that she was again getting too much blood flow to her lungs and was flooding them. She would need yet another surgery. This was heart breaking to hear after the things she had been through in previous surgeries, but it was what she needed. Parker went into surgery on May 7th where they banded her pulmonary artery. Matt and I were able to be together, but without the presence of our families like we had in previous surgeries. Parker came out after a short time and her surgeon said she was doing well and was stable. She has since been recovering and is doing much better. But we know that another surgery is needed in the very near future to start repairing her heart. We would have never made it through these difficult times if it wasn’t for our amazing families, friends, nurses, cardiologists, surgeons, respiratory therapists, speech therapists, occupational therapists, physical therapists, child life specialists, and chaplins. So we ask if you can’t join us for the walk, make a donation to The Children’s Heart Foundation so that research can be done to help babies and children like our girl Parker. The more research that can be done, the more knowledge doctors, nurses, surgeons, and therapists have to help these amazing little WARRIORS! You can register to walk or make a donation with our team Parker’s Posse. Thank you for taking the time to read our story and keep praying for our girl and all the other amazing heart babies. And of course PARKER STRONG!
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