This is the story of the day my life would be changed forever. The day the whole world stood still. It all started like any other normal October morning. Got the older kids up, dressed and ready for their school day. Once they were off to school, we got the girls ready for their six month well baby check up. The worst thing that even crossed my mind could possibly come out of this appointment would be the two crabby babies we were going to be dealing with after their shots. I so wish it would have been that simple. During their appointment, the doctor was taking some extra time listening to Kiley. He then told us he could hear a "slight murmur". This in itself terrified me, I have 5 children. All healthy, I personally had never been anywhere near a cardiology office. Im guessing that the doctor noticed my instant worry and fear. So trying to reassure us, he says "don't worry, if it were anything major they would have caught it at birth".
About a week later on October 12th we arrived at our appointment. Like I mentioned before I had never seen or been in a cardiology office, let alone a pediatric cardiology office. I was a nervous wreck, just from the thought of something possibly being wrong with my baby. I just kept telling myself that everything was fine. There was no way Kiley could have heart problems. We don't have any family history of any heart problems like this.
After what felt like forever, we were called back to see the doctor. Chris and my mom both came for this appointment. First we talked with him for a while about Kiley's health, growth and how we felt she has been doing since she was born. And again, now that I know, I can see all of the issues she was having and all the signs that pointed toward heart problems. Kiley had an electrocardiogram (EKG), an echocardiogram (ECHO), chest X-RAYS and blood work done. After all this, we were given yet another referral. After all the testing was done the doctor came in and told us that he was sending us to C.S. Motts Children's Hospital in Ann Arbor for further testing. He didn't give us a diagnosis, he wanted Kiley looked at by the amazing cardiologist that Mott's hospital has. He said that they would be contacting us within two weeks and if they hadn't called by then to call him back. He did start Kiley on Lasix that day. That is a diurectic or in other words a "water pill". She still takes this twice a day.
Well, needless to say we definitely didn't wait two weeks for an appointment at Mott's. We no sooner pulled into our driveway when the phone rang. They wanted us there the next day at 7 in the morning. Plus they had Kiley scheduled for a procedure the following day, a cardiac cathereterization.
So just a few short hours later, around 3am we packed up Kiley and headed out to Ann Arbor. I can still remember arriving at the hospital, my hands shaking and completely terrified. We meet the doctors that were going to be performing the tests on Kiley. First, we took her for a chest x-ray, then for an EKG, followed by an echo. Exactly the same as the day before. Kiley was sedated for this echo though, so they could get a good look at her heart. After her echo we went back to the room we started in and waited for the doctor, so we could get the results.
I can't remember how long it took for that doctor to come and talk to us. It felt like forever and yet just minutes at the same time. As he walked in I seen the look on his face and my heart sank. He started by telling us that we didn't have to stay in Ann Arbor for the procedure that was scheduled for the next day. It wasn't going to be necessary to do it. And then, in a split second my whole world crashed, the world stood still. I had been holding Kiley, she was coming out of the sedation, so when he said the words "she needs open heart surgery and soon" I can still feel how my legs got weak and it was taking everything I had not to just fall. We just didn't understand. How did my beautiful baby girl go from perfectly healthy to needing life saving open heart surgery? Why? What caused this? Did I do something wrong while I was pregnant? Why her? She didn't deserve this. The doctor had been under the impression that we knew she had some form of a heart problem. Once he realized we didn't, he apologized a million times and tried explaining it all again, but in more detail and explaining exactly what was wrong and why she needed the surgery. I can recall every single, tiny detail that lead up to this moment. Right down to the outfit both Kiley and I were wearing and each magazine that laid on the table in that room. But I can not tell you what exactly that doctor was saying. I was shocked, devastated and especially down right terrified for my daughter. After a while, once my mind stopped spinning, well little bit, the doctors and nurses went over each of the congenital heart defects Kiley was born with, what each one meant and explained how her heart was suppose to be working compared to how it was.
I walked into that hospital that day, with a "perfectly healthy baby" and left with a list of 10 diagnoses, of both Congenital Heart Defects and other conditions. I will explain each of those later. I tried to be strong, I knew I had to be, for Kiley. I just kept hoping I would wake up, that this wasn't happening. Now, to tell everyone... harder than it sounds.
