So we saw the specialist

Well. It has been quite the journey for Josh and I. And it is far from over.

If you want to skip out on this LONG, tearful and maybe slightly negative post, feel free.....

This is my pregnancy saga.

Well, from the beginning of pregnancy, I have had worries and fears, like most new moms feel in their first pregnancy. The worst thing for me, is that doctors don't dismiss my fears, they confirm them.

At 8 weeks, I had bleeding that concerned me. They found out I'm 0 positive and Josh is A negative. So this means I am RH negative, and if the baby has Josh's blood type, I may never have any other children. I have had to take a Rhogam shot at 8 weeks, and then now at 28 weeks, I took it again. If the baby is born with my bloodtype, she will be fine. If the baby is born with Josh's bloodtype, we have to do another shot of Rhogam.

With that said, I thought that was my only problem in pregnancy. I was wrong.

So at 20 weeks, I had an ultrasound. They told me everything was fine (it wasn't).

I had a feeling something was wrong, partly because of how small my baby bump is. That's why it bothered me so much when people brought it up. I know they meant no harm. But it just reaffirmed to me that something was not right and not normal.

I went again a few weeks ago, and I was concerned about a student who squeezed me very hard. So she said I should do an ultrasound. I did. The technician told me everything was fine (it wasn't). Then, before I left, my midwife pulled me aside and said she noticed that the humerus and femur bones were short (I told you about that in the last update).

We went to the hospital today and got another ultrasound, with a perinatologist ( a doctor who deals with babies with problems). The perinatologist noticed on the ultrasound 3 things that concerned her.
1) The baby's head is in the 60% percentile. The rest of the body is in the 5% and less percentile. 2) The baby seemed to have ambiguous genitals.
3) She has Dandy-Walkers Syndrome. This means her brain has congenital brain malformation involving the cerebellum (an area at the back of the brain that controls movement) and the fluid-filled spaces around it. This can range from mental retardation to only affecting her motor skills. We won't know until she's born.

It is scary because it could be severe. And because she could die from too much brain fluid buildup as soon as she's born. Also, she could have to have a shunt in her brain to prevent fluid buildup in the brain.

I will have to have a surgeon on hand when Aubrey is born.

It's also scary because we will have to see genetic counseling if we want to have more children.

Then, we met with a genetic specialist. She recommended doing an amniocentesis test. Josh and I aren't sure what we think about that.

The doctor moved my due date back to Dec 29th (it has been moved quite a few times...)

So for one thing, I need a new OB.

The other thing, Aubrey has the umbilical cord wrapped around her neck. This could also be why her body's so small. So if I don't feel 10 movements twice a day, I have to go into labor and delivery pronto.

The doctor thinks it could be other things like Turner's Syndrome or other genetic disorders, but we won't know unless we did an amnio, or wait until she's born.

Basically, we don't know that much and neither do the doctors. We do know more than we did yesterday, though I'm not sure that's a good thing for my emotional well-being, but whatever....

So...basically.

People ask me if I'm okay.

I'm not trying to be rude, but I'm thinking, "No,  I'm not okay. 1 in 30,000 babies are born with this. So many of my friends have normal, healthy babies. Of course I'm not okay. I found out my child will not be perfect and may die and may not be healthy. I also found out I may not have the healthy family I imagined with 2 or 3 kids." But I just say, "Yeah, I'm okay."

You think, "This won't happen to me". But it has.

I am not trying to be negative Nancy.

I should mention that I am not very emotionally stable right now....one minute, I will laugh at something Josh said and the next minute, I'll be sobbing. So if I don't answer your phone calls, do not take it personally. I can't talk about this like a normal person YET but don't worry, I will. I will call you back soon.

Josh and I feel like life is very hard right now, but we have many blessings. Josh has started a great and promising job, I have wonderful co-workers, friends and family have been given me an outpouring of love and support that I could not imagine.

Josh and I are so grateful to have each other throughout all of this. 

We know for certain that Aubrey was meant to be in our family, at this time. We have no clue why.

We appreciate your love and support.