November 15, 2016 we had our appointment with CHOP and that day was such a long day. We went for all of these tests, echoes, ultrasounds, and meetings with all different doctors. Thats when they told us that Caden's condition was as serious as it was and that they were taking our case, and everything would be transferred over to CHOP. The rest of my pregnancy was a crazy ride between all the doctors appointments and symptoms I had going on, but it fly by. Before we knew it I was on maternity leave from work and we were driving down to CHOP for my pre-op visit. That day they told me I wasn't leaving and that I was delivering that night. We were so scared but knew it was going to be ok. March 2 at 8:53pm and 8:54pm the boys were here, Caden Riley and Carter Reid. Even though Carter was healthy they took him to the NICU and Caden was taken straight to the CICU. After a few days Evan, Carter, and I were discharged, but Caden had to stay in the hospital. Caden was placed in the single ventricle category in the hospital but that was not his diagnoses. Caden has Dextrocardia, double outlet ventricle, crisscrossed ventricles, a hole in his heart, thinning of arteries, two main arteries on the wrong side of his heart, his blue blood and red blood were mixing and not giving him good blood oxygen levels, and other things that are to hard to explain. He had a cath done when he was 4 days old and had a stent place in his heart to keep his PDA opened so his blood oxygen would levels would stay above 75 and below 90. Finally after 11 days we were all able to go home together as a family.
Fast forward to April and Caden's levels were not so great and at one of his cardiology appointments the doctor wanted us to go to the ER and wait for an ambulance to rush Caden back to CHOP. We were so scared but did what the doctor told us to do. Caden spent 4 days in the hospital that time and had a blood transfusion. A week and a half later when his visiting nurse came to the house she did not like the way Caden looked or what his numbers were so she called CHOP. We went back to CHOP and he was there again for two weeks. He had to have another blood transfusion and two caths done. One cath was to take pictures and the other one was to add another stent. So in his first month and a half of living he spent most of it in the hospital. On top of all of this Evan lost his job.
We had nurses come to the house once Caden was home and went to all the doctors we were supposed to go to, and on September 20, 2017 Caden had his first open heart surgery at 6 and half months old, the Glenn. That day was one of the hardest days for us and his 3 and a half hour surgery felt like days long. Waiting for the doctor to come into the consult room to go over his surgery with us felt like forever. We were so happy that everything went well. They basically reconstructed the top portion of his heart.
Caden is now doing very well and Carter is there to help his big brother as much as his twin could do. Caden will need another surgery to fix the bottom part of his heart, but not until he is 3.
Again we don't like to ask for help but we really do not know what else to do. The medical bills are so much and with Evan not working it is hard to do it all. We try every day to stay strong for our boys but it does take a toll. Please whatever anyone could do is a huge help.
Thank you so much, we love you all!
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