I have contemplated writing this post a couple of times since my appointment, but today, I read a post over at Mostly True Stuff and it is resonating so much. I have been sitting here for the past half an hour, arguing with myself if I should write this or not.

I want to write it to get it off my chest. To share with others what I am going through. To be able to talk about it without someone trying to make the situation all better or blow it off like it’s nothing.

I hesitate to share it for one reason – I do not want sympathy or “I’m sorry” or any crap like that.

I just want to open up and talk about it and share my feelings on what I am going through.

At our “anatomy ultrasound” on October 17th, we were able to see that we were having a girl, but, my sweet stubborn little girl loves laying on her back so the ultrasound tech could not get a good view or measurement of her spine. “She” (baby girl) was also chilled out with one of her hands behind her head so the tech could not get a good view or measurement of that either. We were to come back in a week.

We returned on the 24th and were able to see the hand we were “missing” from the previous appointment, but she was still laying on her back as I would later find out she loves so much, so we were still unable to get the spine. This time, we were going to be referred to a perinatologist.

October 26th was the longest day of my life!

My appointment was for 930am and I had to arrive by 910am. We were told to expect a 2 hour appointment for the ultrasound and the meeting with the doctor to discuss the “findings”.

I was taken to the ultrasound room and asked about genetic testing. I was a little confused because we were told we were being referred to get a look at the spine and that the perinatologist would be better at getting this image. Nothing about genetics. And I told the nurse this. I did not have genetic testing done (I never do because it wouldn’t matter to me if they were or were not) and that we were there to see baby girl’s spine. She was satisfied and left the room.

The ultrasound tech came in and commenced the first 50 minute ultrasound. Yes, 50 minutes of ultrasound. Baby girl was having her own little dance party which made it difficult to get good images. She was also having said dance party while laying on her spine so again, there was difficulty seeing that. Oh, and to note, I had asked, out of curiosity sake if you could tell if a baby had Down Syndrome via ultrasound. The tech responded with: “that’s what we’re looking for”. Again, shock as I was not told that was what we were doing at any point. I was still under the impression that we were just looking for a spine image and measurement.

After 50 minutes, the tech thought she had “decent” enough pictures for the doctor and left the room. Upon return, she stated the doctor wasn’t in yet and that she (the tech) was not happy with some of the images so since we had time, she’d like to do another ultrasound to see if she could get better images.

After another round of ultrasound (roughly 20-30 minutes worth) the tech seemed pleased and went to meet with the doctor. (Let me just add that baby girl had still not gotten off her spine and she was still having her own little dance party that continued to make life difficult for the tech to get good images and for me to get pushed and shoved externally and kicked and hit internally from baby.)

After waiting for 20 minutes, the tech came back stating the doctor wasn’t happy with the images so we had to go again. This time, she was lookig for something particular doing the ultrasound on the baby, but she would also need to do an internal ultrasound (yippee, right?) At this point, I began to panic. I understand the tech cannot tell me anything so I’m clueless. The last the tech really said was that we were looking for down syndrome indicators which was news to me. So at this point, I’m worried something is wrong with baby and no one is telling me anything.

At this point, I would like to add in a little bit of background.

I have worked in the field of developmentally disabled individuals since I was 19. I have said since day one that if I do not have a child of my own that is “special needs” I will adopt one once my kids are a little older. I am 100% open and accepting to having a baby with special needs.

So she does her thing. Again. And again, not saying anything.

She leaves again to show the doctor what she has and this time, the doctor returns with the tech. She still isn’t happy with a certain measurement (that I would later discover on my own was them attempting to measure the choroid plexus cyst or the fluid filled space where the brain and the spinal cord meet). The doctor then took a whack at getting the measurement and took several before she was satisfied.

At this point, I had been there for three hours. Three hours of ultrasound and no clue as to what was going on!

I was able to get re-dressed and cleaned off and was taken to the doctor’s actual office to review the results. The doctor (the perinatologist) took all of my history and talked about my current children, current care, etc. She said everything looked “fantastic” but there was a concern she had to mention.

She stated she hates mentioning it because it can mean nothing. She stated it occurs in “normal” children, but is more common in children with down syndrome.

Baby girl has a white spot on her heart. She reiterated that it is common in “normal” children, but more common in children with down syndrome. She stated that because baby girl has this spot, there was a 1 in 698 chance that she would be born with down syndrome. BUT, because of my age (I’ll be 30 when she is born) the risk increases to a 1 in 350 chance that she will be born with down syndrome. (Now I really have a complex about turning 30!)

I have to admit, I didn’t expect to hear that, but was okay with that. I wanted to know what my next step was and what they would do if I were to get further testing and found out she did in fact have down syndrome. I stressed to the doctor that my number one concern at this point was that she was born alive.

Being a mommy blogger and a lover of special needs, I follow a few special needs mommy bloggers. I have read that the risk of still birth is increased in children with down syndrome and if that is the case, I want to ensure I get the proper care necessary to ensure my baby is born alive. That is my only concern.

I was told that I could do a blood test that would give me a better risk stat, but that my time to do that expired the next day. This test would be 80% accurate. I could do an amniocentisis, which hubby and I strongly agree we are not willing to do. This test is 100% accurate. Or, we could do a “new” blood test not covered by insurance that would give us a 99% accuracy.

I was also informed that if she were to have down syndrome, I would be monitored more closely. Much, more closely.

We left the doctor’s office with that knowledge and information to discuss at a later time. At which that still has not occurred.

Hubby has tried to blow this off like it’s no big deal. And after doing some research, I do believe there is a very slight, slim, small chance she actually had down syndrome, BUT, I want my baby – down syndrome or not – to be born alive. And if that means I need to pay a few hundred dollars to get a blood test that is 99% accurate to tell me yes or no to ensure she lives, then fine.

The post from Mostly True Stuff completely hit what I felt:

I think it’s very important to know what you’re dealing with. I’ve heard people say, “We don’t get tested because it wouldn’t change anything anyways.” I understand that, but testing does change things. If your baby comes back with a diagnosis, you will receive a higher level of care. This is SO important. Had Abby not been induced the morning she was born (my labor had stopped, they were going to send me home, but I had already had an epidural put in so they went ahead with it) we could have very well lost her. By that time, the placenta had not only stopped functioning, it had crumbled.

That is my concern! That is my only concern! But not everyone understands this or sees this.

I get the “normal babies are born still born”. Yeah, well, I get that, but if I can help eliminate that in the tiniest bit with baby girl, then I want that. And I am so frustrated that some people just cannot understand where I am coming from. While the risk may be small, there is still that risk. Am I so wrong for wanting to be proactive and reduce any risk there is?