In so many ways, getting to the delivery seemed like a race we were trying to finish. Once we had the baby we would know how healthy her organs were, we would know what her arms look like, we would know what to do, etc. The truth is, in most respects, her birth is the beginning. Now that she is here and we know what she looks like, we know what she looks like - that is it! The point is, in so many ways, we know nothing more than we did two weeks ago! Obviously once we get scheduled with the Genetics and Orthopedics teams at Children's, we will have some more information and will know more than we do today. I talked to the Genetics counselor yesterday and she is going to call Orthopedics, get dates for their availability and give me a call back today to confirm everything.
I cannot even express how amazing I think Children's National Medical Center is. To have someone making all these calls and coordinating the appointments to ensure both doctors (and any others they may suggest we see) know who we are, why we are being seen, and what we need is amazing. Not only do I not have to be responsible for all of those calls, etc, but I also know that it is well coordinated. We will not arrive at the doctor wondering if they have seen the results of a certain test. Everything is kept on record and all the doctors review these records before seeing you, they know what is going on when they walk in the room. And the "charts" are not random notes that may/may not make sense to another doctor. Every visit results in a 3-5 page report sent to all relevant doctors, including the pediatrician, and the parent. If we were to move or switch doctors, I would have 10 pages of information to take on the munchkin's "short stature" from her various endocrinology visits.
Right now, we know she is gaining weight like a champ - thanks to my muscle milk! Her heart and lungs sound good. She looks perfect, all her other bone structures look good. Both arms are short, approximately half the length they should be, her right arm has three fingers, and her left has two fingers. Once we get the x-rays done, we will have a better idea of her bone structure, things like whether or not she will have a palm or just fingers, how much bend she will have, etc. I am certainly excited to move forward with the testing so we know what services she needs. But, right now, I am just thankful she is as healthy as we hoped she would be.
Thanks for listening!