

As I'm sure that you could gather by the title, we are proud and so happy to be expecting a beautiful baby girl, who we are pretty sure that we will be naming Isabella. Up until recently, our family has not known very much about our little girl because of our difficulty in finding health insurance due to the diagnosed blood clotting disorder MTHFR that has stigmatized our family's health record. Since finding health insurance in May, however, we have been very eager to catch up as much as possible on my prenatal care.
Last Tuesday was my first official ultrasound (the big 20 week anatomical ultrasound). This screening revealed a couple surprises, to say the least. The first of which was that we were having a girl (Jake and I had both been completely certain that we were having a boy). The second was a little more dramatic: our baby girl is missing her left forearm and hand; a birth defect known as a Transverse Limb Reduction Defect. It took a couple days for the news to sink in (although I'm still not sure that it has completely), before we were ready to tell any family. When we finally did open up to close family, it was only because we felt that we had to -- not really because we wanted to. As it turned out, responses to the news were very mixed. On the one hand, we got a lot of empathy and understanding, a lot of prayers, and many words of encouragement, for which we are very grateful. Unfortunately, not all reactions were so positive, which has been pretty sad for us.
We had a Level II ultrasound this morning, which confirmed the news of our baby's arm. Everything else looks structurally okay, so far -- the heart, the brain, the baby's size and facial features are all measuring normally, which gives us great hope that this defect is an isolated problem. The doctors are indicating that, based on the family history of clotting disorders, the likelihood is very great that what caused the defect was a blood clot to the baby's arm very early in the pregnancy, causing whatever was below the clot to simply stop growing or "slough off". It is possible, however unlikely (less than 5% chance), that other genetic factors or a syndrome caused the defect, but we are praying that this isn't the case. Although the stress of the situation is very disheartening, Jacob has been a huge gift to me. Like when Ariana was diagnosed with her seizures, brain hemorrhage, strokes, and clotting disorders in the NICU, the weight of life is bringing Jacob and I closer and closer together. While I must admit that we don't always get along perfectly during the day-to-day and we have our tifts like any other couple, when the going gets tough, we are each other's best friend. It's in times like this that I know that we were meant for each other. We have spent the better part of the last week reading Chicken Soup for the Soul: Children with Special Needs and it is so special and heartwarming. I love my children so much! I love them with their challenges and their differences. I love that they bring me more joy than I could have ever thought possible. I love that they have taught me the meaning of joy, especially through trials -- because without the trials, I might have taken something for granted -- like what a miracle life is. I tell Ariana every day "I would never take you back to the baby store" -- I shredded that receipt long ago. Although she doesn't understand what this means, one day she will, as will Isabella. I wouldn't trade them for anything in the world -- not a baby that can walk, not a baby with 10 fingers, not even a "normal" life. We can be a special family, and that's okay with me. I can't wait to be a mom to three great, very different kids. When Jake and I first found out we were having a girl, we were a little saddened that Gabriel wouldn't get a sidekick and a playmate. Now, we are happy that Ariana will get a best friend. I can just see them now -- Ariana's left hand (her preferred hand) holding Isabella's right hand (her only hand)...a perfect pair.