Welcome to Logan's Warriors
Thank you for visiting my fundraising page for the Congenital Heart Walk. Raising funds for CHD research is critically important to all Heart Warriors and Heart Angels, and personally very meaningful to me.
Please help us to fund CHD research by making a donation to my personal fundraising page. Together we can make a life-saving difference!
As you all know... we thought we had a healthy baby this entire pregnancy. no red flags, a repeat test for gestational diabetes and preterm labor. But heart defects weren't on our radar. Logan was born at 36 weeks 4 days after my water broke overnight. We didn't find out the sex so to our surprise we welcomed our sweet baby boy! He was put in the NICU for low blood sugars and a heart murmur that went away the next day so he was quickly back with us and we got to home within the normal time frame for a c section. Fast forward to when we got home and we noticed his jaundice and his breathing. I took him to the pediatrician weekly and they told me they had "zero concerns." At 2 1/2 weeks old he suddenly turned a pale color and was quite mottled while we were at story hour with Avery, our 2 year old daughter. He was lifeless so we decided to drive to the emergency room at Bryn Mawr which was almost an hour away. They struggled to get blood from him and repeated tests for hours... including a spinal to check for meningitis but he was overall admitted for a UTI. When we got to the pediatric floor i expressed my concerns once again about his breathing... this Dr noticed it and had concerns as well so she ordered an Echo for the next morning. They did the echo first thing in the morning and I knew something was wrong by the tech performing the echo in our room. Suddenly the Dr came in and explained how critical care team from DuPont was coming and he will be transferred immediately. Next thing you know people are surrounding my baby and putting him in a box on a stretcher hooked up to machines and we were on our way. They bring us to the CICU via ambulance and notify us he will be receiving open heart surgery the next day. Our world was shattered. We spent as much time as we could with our boy before surgery before having to head back to the Ronald McDonald House (who were amazing during our 3 week stay) I can't even begin to express our gratitude for those who donated/helped us/reached out to us at this most difficult time. Logan was diagnosed with hypoplastic aortic arch with coarctation of the aorta and a moderate sized muscular ventrticular septal defect (VSD- hole in his heart) and also a bicuspid valve. We spent about a week in the CICU and 2 weeks in the step down unit while of course missing our Avery. We were eventually discharged only to be back after a follow up appointment in January which showed a severe re coarctation after only 2 months. He then had to have a cardiac cath with an angioplasty which was unsucessful due to the coarct being so severe. He will require another cardiac cath with an angioplasty in just a few short months as well as another open heart surgery to remove the PA band and possibly repair the VSD. A few days later we were back in the ER due to his legs being mottled and purple where they thought he had an artery spasm from taking blood pressures. This has been a world wind and its far from over but he continues to be the happiest little guy.
Update: Logan had another cath and his second open heart surgery in April in the midst of this covid craziness. They used two balloons to open the recoarct with the cath which was successful. They thought they might have to do another repair during surgery the following day but only had to remove his PA band from around his pulmonary artery. He’s had great echos since and graduated to going every 2 months instead of every month! We go for his next echo on August 6th. So praying for no changes! He is currently behind in some milestones due to 12 weeks of sternum precautions between the 2 surgeries but we are working hard with PT over zoom to get him stronger and moving!
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