I have started this blog to provide an easier way to friends and family to follow our family and the journey we make through Addy's heart disease. A little history.... My husband Heath and I are both pediatric intensive care nurses with specialty experience in congenital heart disease. In April, we were 24 weeks pregnant and expecting a baby girl when we got the biggest bombshell of our lives. Our baby girl was going to have a complex heart defect, more specifically several of them. If ever I could have had the experience of my heart stopping it was when that doctor uttered those words. I felt like I couldn't even breathe. Our obstetrician told us that statisically we had a better chance of winning the lottery than her having this heart defect. The chances that her daddy and I would do what we do is even less than that.This was not at all what we had anticipated but we were getting ready to start a very long journey with our baby girl.
Since many of our friends are in the medical field I will give you the technical names for all that she has. Addy is essentially a single ventricle variation of hypoplastic right heart syndrome because that's the closest thing the doctors could figure out to call her. She actually only has a bulboventricle for an RV and a large left ventricle. We are hoping the fact that she has a large LV to pump will be her saving grace. She also has transposition of the great vessels, coarctation of the aorta, tricuspid atresia, and a vsd/asd. Yup...that's all, nothing major. Addy would need 3 surgeries before the age of 2 to give her any chance of survival.
We anxiously awaited her arrival and on August 19, 2010 at 9:41 am Addyson Grayce Frazier joined us via C-section. She was more beautiful than I ever imagined. To our relief, she came out screaming bloody murder. As PICU nurses, Heath and I both knew what the possibilities we were about to face were. On August 25, at 6 days old, Addy had her first open heart surgery commonly known as the Norwood procedure. There is a 20% mortality associated with the procedure, and another 20% chance she won't make it to her second surgery at 4 months old. Talk about statistics that make you lose sleep at night...
To everyones surprise, Addy flew through the first surgery like no one imagined, us included. By day 4 post-op she came off the ventilator and at 11 days postop we went home! Oddly enough, Heath and I kept waiting for the other shoe to drop. Norwood babies just didn't do this well, and we couldn't forget that even when dealing with our baby girl. The first 2 weeks after going home we were back at the hospital 3 times for problems of medications and reflux. After that we finally got everything straightened out and have been doing well since.
We see our cardiologist once a week on Mondays. Dr Kavanaugh is our cardiologist and our guardian angel. She is the best doctor we could ask for and we credit her with a large part of why Addy continues to thrive. At this point in the process, we are all on the same page that at any point if Addy does not look perfect, she is readmitted to the hospital. So far Addy has followed this plan but it can change any day. Addy is currently the model child for the Norwood. Some days she has a slight dusky undertone, but for the most part she is a very pink baby! She is meeting all of her milestones so far and loves to smile and interact with anyone that will talk to her! As with most of these babies, she still has a feeding tube. She takes somewhere between 50-100% of her feeds by mouth but doesn't always get it all in. It is crucial for her to grow to be strong enough for her next surgery so she is on a strict every 3 hour feeding schedule. There is not much sleep around our house these days; Oh how I long to be able to feed on demand! So far, this is working well though and at our last checkup and was a whopping 10 lb 2 oz! She has her daddies' bright blue eyes and I think she is going to have my dark brown hair. I might be a little partial, but I think she is a beautiful baby.
This is only just a little bit of our history but we hope that everyone will continue to follow our family as we make this journey
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