Thought I would make an effort to update everyone on the pregnancy so far.
I just had my fourth doctors appointment in six weeks... that's right, fourth (I think most people would have had one, maybe two by this point). Something I guess I'm going to have to get used to having a NAIT baby (for those of you just tuning in, check my previous notes which explain what NAIT is and the details of treatment for it. Most of them were written this time last year, as the doctors were uncovering everything. I know quite a bit more about the disorder now than I did then, so if you have any questions feel free to ask!). My last appointment was with my high risk doctor (Dr. El-Sayed) who is the chief of obstetrics at Stanford Hospital. It's a little different getting used to a new doctor and his style of handling things compared to my regular OB (Dr. Chein) who we grew very close to during the last pregnancy and aftermath. All in all Dr El-Sayed is a good man, and definitely knows his stuff. We trust him, it will just take some time to form that bond that one gets with their doctor. The biggest relief so far is that he has agreed to allow me to deliver at Sequoia Hospital (where I had Jax) with Dr. Chien leading the c-section. This is of course all assuming that the pregnancy goes smoothly and that the NICU at Sequoia is comfortable knowingly taking on a NAIT baby. Everyone keep your fingers crossed! Sequoia is a wonderful hospital with kind nurses, knowledgeable doctors, a strong NICU, and private rooms for all the moms (with beds for the dads too!). I loved giving birth there last time, and have heard it is day and night from what Stanford has to offer.
According the latest ultrasound I am actually a full week further along than what we previously thought. Actually this explains a lot to me! It makes me feel a whole lot better about some of the things I have been feeling, not to mention the size of my belly already! I swear I can feel kicks already. I know that's impossible for an 11 week old baby, but I still swear I feel it 8-) As far as we can tell everything is normal and perfect so far. The worst part about all of this is the unknown. The risk of the baby hemorrhaging this early in the pregnancy is unheard of, most happen after 20 weeks, with some as early as 16 weeks. The most important thing to decide now is when to start treatment. I am hoping to start as early as possible reasonably. Dr. El-Sayed usually begins around 20 weeks... he is going to look at the latest research during the next two weeks and we will settle on a time frame at my next appointment. I appreciate his willingness stay as up to date as possible on this disorder, since unfortunately it is severely under-researched, and admittedly it is extremely confusing even to those who treat it. As long as there is an explanation behind whatever time frame is chosen I will feel comfortable. Right now 20 weeks sort of feels like an arbitrary date someone picked out of a hat, and since that time every NAIT patient has began treatment at 20 weeks just because that's the way it has always been done. I need a more of an explanation than that. From what I understand if you're previous child did not have an ICH (inner cranial hemorrhage) you are placed in a "low to moderate" risk category. And since ICH usually don't occur until after 20 weeks they assume that that is the best time to start treating a "low to moderate risk" patient. The problem I see with this theory is that 48% of babies who have and ICH at birth are siblings of children that did not. To me that indicates that maybe they should take a look at starting treatment earlier regardless of your risk category.
Anyway, I'm babbling. This was supposed to be a quick update!
Hope everyone else is doing well, Happy Thanksgiving!!
~Tracy
