Sebastian

His Story 

   A little backstory to start it all off... My husband and I went through quite a trial trying to have children. We both always wanted to adopt, but knew that we weren't able to afford it and we thought we would have no trouble getting pregnant. After four years of trying and four miscarriages, our lives finally took a turn. We were approached for a private adoption, which made the option affordable and we were so excited. Within the same week, we found out we were pregnant, 10 weeks behind the birth mom we would be adopting from. Everything was going great, up until we found out at 19 weeks that our little boy had a congenital heart defect called "Ebstein's Anomaly." This condition is very rare, and there is a very wide range of severity. The anomaly is a displaced tricuspid valve, causing many cardiac complications. Throughout the pregnancy, we were seen by several doctors, our cardiologist, Dr. Cuneo, our regular OB, and a couple high risk Doctors. It was a whirlwind pregnancy, very intense at times, but we made it through somehow!

So bringing it to present day, here is what we know so far, to the best of our understanding. Sebastian has a moderate case of Ebstein's. The tricuspid valve is severely displaced, and it allows blood to flow back up, when it would normally close off. This means that the blood that goes to his lungs is not properly oxygenated, and the backflow allows his heart to enlarge. At the time of birth, it took up about 70% of his chest cavity, which leaves very little room for his little lungs to function. This is his main problem, and the reason that we know he will need to have multiple surgeries. Unfortunately, the repair to the valve will not grow with him, so as he gets bigger, he will continuously need surgeries to replace the repair with larger parts. We do not know when the first surgery will be. It's always a balancing act of waiting as long as we can to allow him to gain weight, but acting before the problem becomes to severe for his body to handle. The second problem is a hole in his heart, called a VSD. This is a common problem for babies to be born with, and normally scary, but in our case it is creating an area of pressure relief, so for now it's a positive thing, and will possibly repair itself without the need for surgery as he gets older. The third problem he faces is PDA, a condition in which the ductus arteriosis allows the blood to flow back, rather than in one direction, and allows fluid to gather in the lungs. This is also an up in the air condition, in that it may eventually repair itself, or it may require surgery. They are currently giving him medicine to help reduce the fluid in his lungs. He is starting to tolerate feeding some, but because of his rapid breathing, a result of too little oxygen and too little space for his lungs to function, he is having trouble swallowing. We will continue trying to feed him, rather that use the NG tube as much as possible. The fourth, and final problem Sebastian faces at this time is a grouping of calcium deposits on his brain. These were caused by a prolonged (more than 2 weeks at a time) period of time where his brain was deprived of oxygen in utero. We won't fully understand the amount of damage this will cause until he is 2 years old, but right now the doctors believe that the location of the deposits will affect his motor skills, meaning he may need physical therapy to walk, and speech therapy down the line.

Every day we have with Sebastian is such a blessing. He is so handsome and looks so wise when he stares at you. We are overwhelmed with emotion on an hourly basis, but learning to be positive about the situation. The nurses are amazing and they assure us that he is doing great, better than expected, but they also give us a sobering dash of reality now and then and remind us to cherish the days we have with him, because for many heart babies, something goes wrong in a flash and they don't make it. Anyone who would like to pray for our son, please do. We need all the positive energy we can get.