Today's meeting went really well. I was pretty nervous that it would be negative and just all about how Quinn would die and there was nothing we could do / should do to stop it. It wasn't like that at all. The ladies that we met were very supportive of everything we (I - Steve didn't talk much) had to say. I think it might have been a tad bit obnoxious that I had already planned or am in the process of planning most of what they brought up. They could clearly see that I had done a lot of research. We did learn some new things about Quinn from Dr Stewart's report from the ultrasound. Although he told me that he thought the brain condition was Arnold Chiari the report stated Dandy-Walker Continuum with a cystic dilatation of the 4th ventricle. I had actually mentioned to them before they even showed us his report that I hadn't seen anything on Arnold Chiari and Trisomy 13 and I was really wondering if it wasn't a Dandy-Walker cyst. Apparently, I was right. How effed up is it that I even know these terms let alone can decide on my own that I think the doctor was mistaken when he initially told me.
Another major thing we talked about was Quinn's omphalocele (protruding bowel) and the effects that might have on labor and her treatment. I don't know why but even though we both knew that she had a protruding bowel neither Steve nor I really gave it much thought. Apparently, we should. We have already been warned that due to this she will most likely be in the NICU even longer than we might have expected.
This was pretty much the only real medical talk that we did. We saw the picture of Quinn's chromosomes and were advised that this was definitely not translocation which means it wasn't hereditary. This was a random act and nothing that came from one of us therefor we are not at a much higher risk to have it happen again.
We went over my birth plan and everyone seemed to think that it was very realistic and will be helpful for everyone. Of course over the next few weeks as I do more research things might change on it but the main guts are there and I am pretty comfortable in what we have decided.
I am so thankful that the meeting went as well as it did. I was very comfortable with all of the ladies and felt like they really do have the best interests of Quinn in mind. I never once got the feeling that anyone was thinking that she would die anyway so why bother with treatment. One of the ladies said that Quinn will lead us. She will tell us what she needs, we just need to listen. This is exactly how I feel. Every child with this defect is unique. You don't know what issues she may or may not have. You don't know what issues she may have that won't cause her any problems while something you think to be trivial might be what kills her. You just don't know. We will have to listen to Quinn and she will let us know what it is that she needs and I also believe that she will let us know when it is time to stop.
There will be many more meetings in our future. We will be setting up and echocardiogram for the next few weeks so we can get a closer look at her heart and see if there are any holes or other defects. We will also be meeting with neonatology as well as the surgical team to discuss her omphalacele. One of the biggest problems with the omphalacele could be the fact that many of these children have problems with reflux and swallowing and have to have a G-tube or button (gastric feeding tube) put in. This could pose to be a problem because of the omphalocele. There are so many what ifs and issues that could arise that it makes my head hurt.
I hate that I have to know what all of these medical terms are. I hate that I have to even know the word omphalocele or Dandy-Walker continuum. I hate it. I just wish more than anything that my daughter could be healthy like so many other children who are born. I don't want to have to go through this. I don't want her to have to go through this.