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Wilders story !
Our journey started when I went for my normal anatomy scan at 20 weeks ! During the scan we learned it was a boy and then after when I went into see my doctor for her to tell me the results she said the ultrasound tech seen something wrong with his heart so you will have to see a specialist! At that point we didn’t know what was wrong with our sweet little innocent baby ! Week later we went for our first high risk ultrasound the doctor still couldn’t really tell us what defect it was so he said your going to have to have a fetal echo done so they referred us again to another high risk doctor at musc ! Our scan was complete and then we met with our team of doctors ! They came in with a diagram they said our baby’s heart defect is called mild aortic stenosis! They way the explained it put us at alittle more at ease about things ! I went for ultrasounds and echos every 2 weeks ! I got to be about probley about 30 weeks and we went in for our echo and things had changed to critical aortic stenosis my heart dropped they told me he would probably need surgery as soon as he was born and probley be in the hospital for at least a month ! During all this they also found I had poly which is extra fluid in my belly ! So they moved my csection date to sept 25th ! To make sure I wouldn’t go into labor on my own ! On the morning of my csection a lot of thoughts went through my head after the pediatric cardiology doctors came in my room and started talking to me and all the scary things they were saying like as soon as he would come out he would be put straight on a breathing tube ! But he was stronger then ever when he was born ! When he was just 5 days old went under for his first heart cath procedure! He came back from the procedure on a ventilator which is normal he was only on it for a couple days and got weaned off ! At about 2 weeks old we were told he was in heart failure so we were placed on a heart failure iv drip ! Then couple more weeks his gtube was placed and then on Halloween we finally moved out of icu ! After 45 long days in the hospital we were finally able to bring him home on hospice care ! Once he came home we had appointments every 2 weeks and then on December 8th we got the call from his cardiologist that wilder would need to come in the next morning to have his second cath procedure done on his heart and also had to have a broviac placed for his heart failure medication again ! That was only supposed to be a night stay but wilder had other plans for us he started having seizures and they took him for mri and found out he had a stroke a blood clot from his left ventricle when they ballooned the valve they shot it up to his brain causing the stroke ! After couple days of monitoring they finally found the right medication to stop the seizures and we were able to come home ! He stayed stable for a while no seizures and was able to come off meds after 2 years of being on it! He had his first open heart surgery on Feb 22 2023 and he rocked it ! We were out of the hospital on day 5! So far everything is looking great he was able to come off all his meds completely! He is living his best life !
