On Monday Addie will be 2 months old! We are so amazed and so blessed to have our little miracle. That is truly what she is. We never imagined she would make it this far, and be doing so well. She was 4 lbs, 2 oz at birth and is now 6 lbs, 14 oz...almost 7lbs! When we were told she had trisomy 13, the geneticist told us how most babies are miscarried or still born, most die within the first 7 days, and VERY few make it past one month, we've seen statistics ranging from 5 to 10% of live births making it that long. She suggested websites but warned us that those were the rare cases and not to have false hope. So, we basically had NO hope.
Here we are, God is proving once again that the doctors aren't in control. She is doing so well just to be able to eat from a bottle, with no supplementation from a feeding tube. It is also amazing that she has the ability to see, although we're not sure how well, and she holds up her head pretty well already...for a 9 week old baby who was so underweight and early. Next week we are even starting therapy for her so she can have the best chance and to make the most of her life, however long it will be. Sunday a proffesional photographer is coming to take bereavement photos of our family. Check out their website at www.nowilaymedowntosleep.org. It will be such an amazing gift for us and at no cost.
We have been amazed by our baby. From the photos of her at birth, you may be able to see why the doctors had no hope for us. But she is beating odds. We have already learned so much from her. We were told she probably couldn't digest food due to ruptures in her intestines, but they healed! We were told that once she gained weight her body would have trouble managing it and we would see major changes a few weeks after leaving the hospital. We did see changes, but all for the better. We were told she might not leave the isolette if her brain couldn't regulate her body temperature, but she did just fine. We were told she wasn't eating from a bottle and that trisomy 13 babies often don't want to eat because their brains don't let them know their hungry. They don't develop a swallowing reflex. Now she takes over 2 ounces all on her own, loves her pacifier and screams when she's ready to eat. We were told she had apnea spells and once she was weaned off the caffeine she was being given through the IV she would probably have spells again. So far, she has not had to have any severe spells that require artificial respiration, and even the spells she has may be normal for babies as they typically have irregular respiration! We were told that she might not ever gain weight. Now she isn't too far from doubling her birth weight. I could go on and on. The doctors were great and I'm sure were reacting the way they did because of their past experience, but it was so difficult to hear her referred to as a "fluke" or simply a bunch of cells that didn't form correctly, rather than a human child. We all have our imperfections! But these children can experience joy, then there's the tremendous amount of joy she has brought to us already. She is really such a normal baby right now.
Thanks to everyone for being such amazing friends and family and for all your prayers. We wouldn't have made it through this without you all, really. Continue to keep her in your prayers. She is so loved!
