More appointments, more hours at the doctors office, and more pictures of our precious girl. But not a whole lot more helpful knowledge than we had yesterday. So how come I feel like I'm on information overload?
We had another ultrasound this morning, followed by an appointment with a different perinatologist (same kind of doctor as Dr. Nitsche, just a different doctor in the same practice), followed by an appointment with the genetic counselor. It took 3 hours.
I won't give ALL the details of those 3 hours - this post would be really long if I did.
Before all of the medical info, I do need to say... we enjoyed watching Elliana during the ultrasound today. Watching her move and kick is amazing, given the circumstances. Seeing her suck her thumb made everything feel so normal. I can't wait to hold her. :-)
As of today...
*We did get a little encouraging news about Elliana's brain, but the doctor also noticed something 'new' in her brain today. We're afraid to put any confidence into the encouraging news. This doctor was a little 'passive'. She didn't really answer a whole lot of our questions. She seemed to think the genetic counselor would be able to give us all the answers we were looking for. The genetic counselor couldn't answer all of our questions, by the way. I wish we'd been able to see Dr. Nitsche.
*The biggest concerns are still her brain and heart. There are three other concerns, one of which was new to us today.
*Jason and I both have completely normal chromosomes, which is good. But that also means that our bloodwork was not helpful in helping the doctors make an exact diagnosis.
*Elliana has an extra piece of chromosome 9. There is also a smaller piece of a different chromosome attached to the extra #9. They're unable to determine what that smaller piece is.
*There are no other reported cases like Elliana's. The closest we can get to knowing what to expect is somewhere in between two other diagnoses: partial trisomy 9 and complete trisomy 9. There are several living children who have been diagnosed with partial trisomy 9. They have delays and differences, but they are living. There are no known living children with complete trisomy 9. In all of the reported cases, either the mothers terminated the pregnancy or the baby died before birth. Elliana falls somewhere in the middle of those two, sort of. But the extra piece of unknown chromosome makes things much more complicated.
*The prognosis: we have no idea. Because of the combination of things 'wrong' with Elliana, she may die before she's born. Or she may die shortly after birth. OR, she may live a few months, or even years. We have no idea. I don't think we'll know until it happens. IF it happens. We don't know which scenario to prepare for.
So... pray for us. We need to talk with our children about this, but we don't really know what to tell them. We need to make a birth plan with several different scenarios in mind. Talking about these things feels really heavy. And draining. I'm pretty sure a margarita would make that conversation a little easier. I guess Jason will just get my portion. ;-)
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