As I said yesterday I am brand new to blogging so I figure I will start out today talking a little about our introduction to the world of Down Syndrome. I wish I had started this back when Connor was born, but now I feel like I would like to share all of those details I failed to share in the past. I will try not to go into too many details but would like to use this as a way to make sure I never forget all of the important things and my feeling along the way.
I would like to start by saying that at this moment, Connor is a 20 month old toddler who is the light of my life! He is not walking yet, but he pulls up to stand and is getting into everything. He army crawls like a champ and is actually very fast. He loves his big sister, Makayla and will do anything he can to be with her at all times. He brings us so much joy and teaches us something new everyday. I cannot imagine my life without him. Now in honor of Down Syndrome Awerenss month, I will go back to the beginning and give a description of how we got to this point in life!
I don't remember the exact moment, but it was the end of November 2010 and I think I was about 29 weeks pregnant. We had an ultrasound done and the nurse called saying that the doctor thought there was an abnormality in the baby's heart and that I had to go for a level 2 ultrasound. I had that done a few hours later and was then told that there were actually 2 holes in the baby's heart and that I had to go for a fetal echo down in Boston. Two days later that test was completed and we were told that Connor had Complete Atrioventricular Canal Defect and would need to have open heart surgery between 4-6 months of age. I can't describe the feeling I had at that moment other than complete fear and devastation. At that time the doctor said that he had to inform us that the baby had a 50% chance of having Down Syndrome with this heart defect. I honestly did not know what to think or feel at that time. I did not know much about Down Syndrome, but I knew that I was not going to be the type of mother that this child needed. On the way home from the hospital I immediately started researching the heart defect to find out more information about that, but as much as I hate to admit it now, I was more concerned on that statistic on the possibility of Down Syndrome. I had the blood test done early in the pregnancy and my chances were extremely low. I was only 27 years old! After discussing the statistics with the high risk doctor I had seen we were feeling a little better as he said that the chances were actually much lower than the 50% based on my age and results of my blood test. He advised that they could still do an amniocenteses for a diagnosis, but based on the risks of that we immediately decided we did not want that done because it wouldn't change a thing. I borrowed the book "Gifts" edited by Kathryn Lynard Soper from our local library and cried while reading all of the amazing stories shared by moms of children with Down Syndrome. I was still praying that our child would not have this diagnosis, but was starting to feel that maybe we would be ok if he did.
I was scheduled for a second level 2 ultrasound on January 12, 2010. At this time, we were told that Connor's lungs were enlarged and they had to induce labor immediately at Tufts Medical Center in Boston. In a panic, we drove down to Boston and as soon as we arrived they began the meds to induce labor. Connor was born on January 13, 2010 weighing 7 lbs and 20 inches long. He was 36 weeks 4 days. The 15 doctors that were in the room while he was born took him away immediately and brought him to the NICU. I barely got to take one look at his beautiful face as they took him from the room.
I don't remember all the details of the next few hours/days, but the diagnosis of Complete Atrioventricular Canal Defect was confirmed. Connor also had Thrombocytopenia which meant that he had an abnormally low level of platelets and had to have a transfusion. He also had Transient Leukemia which meant that he showed signs of Leukemia which put him at high risk of developing Leukemia in his early years. The diagnosis of Down Syndrome was confirmed, but at this point I can honestly say I was more concerned with his health and the possibility of Connor not making it at all! Connor also had Jaundice and had to go under the lights during his stay in the NICU and although that was the least of our worries, I will always love this picture....
Connor stayed in the NICU for 7 days and after passing the car seat test was finally able to come home with us to meet his big sister Makayla!
No comments:
Post a Comment