Yesterday was a busy day. First we met with Julie, our Case Manager at Children's Hospital and Dr Protain, a Neonatologist. Dr Protain was very nice and everything that she told us was very helpful but it was also extremely hard to hear. While being very nice and caring she was also very realistic. She explained some of the issues that the omphalocele might cause. We do not know the size of the omphalocele and that will of course determine how many issues Quinn might be facing because of it. She also explained some of the issues that might be caused by the Dandy Walker continuum and how the omphalocele might affect that as well. Because of the Dandy Walker she will need a shunt to drain the spinal fluid that will back up in her brain however because of the omphalocele they will not be able to drain it into her abdomen and the only other choice will be to drain into the heart. Dr Protain said that she has never seen one that is drained into the heart work and they often times need to be replaced over and over again. She said that she would not want to do that to her child.
We also discussed that though there are things that the medical field could do for Quinn when she is born it doesn't mean that they will help her. She took an oath to never harm a child and there does come a time when doing any further procedures will be harming her. Steve and I have said all along that we will never do anything to prolong her suffering. If it isn't something that better the quality of her life then it isn't something that we would do.
Another thing that we discussed is that regardless of if Quinn should come vaginally or c-section that I should delivery in the OR. The OR is right next to the room that the neonatologist would be able to work on Quinn in and that way they will be able to do everything that they can if they see that she is not doing well they can give her right back to Steve and I so we can have as much time with her as possible.
Another problem that we might face is because of her cleft. This might cause a problem with trying to get a breathing tube in, in order to get an airway.
Though I have always known that there would be a lot of issues against Quinn when she was born it was incredibly hard to hear it all spelled out for me. When we first heard found out about the diagnosis I had very little hope that we would get any length of time with Quinney. Over the last few weeks I have allowed myself to have more and more hope that we might be one of the lucky families who might even get years. During the course of our conversation, these hopes were all but dashed. Not only does she have so much against her with simply having the Trisomy 13, but when you add in all of the other anomalies there just seems like there is too much against her for her to have any chance of survival. Once again my heart is broken. I have questioned Why so many times and now I have even more whys. Why does my baby girl have to have this terrible condition? Why can't she be like many of the other Trisomy 13 babies who only have to face Trisomy 13. Why does she also have to face so many other obstacles like Dandy Walker and an omphalocele? I don't understand! It isn't fair! None of it is fair! Both Julie and Dr Protain agreed that it is very important for us to get another ultrasound scheduled so we can see the extent of the omphalocele and now that she is larger to see how everything else is forming. I go back to the midwife on the 29th and we will hopefully be able to get the ultrasound set up for the first part of October.
So after I am an emotional wreck from our meeting and only want to curl into a ball and cry I head back to work. I guess it was good that I had to go back and concentrate on work and couldn't just sit at home and cry but my mind was a mess. I somehow made it through the day though with out a major breakdown. After work Steve and I had our first counseling session since hearing about the diagnosis. I don't now how much help it was. We discussed how men and women grieve differently and what we can try to do so that I do not feel so abandoned at times when Steve is angry about the situation. It was okay and I guess only time will tell if it will be of any help.
Today I am feeling okay. Maybe I am slightly numb from all of the information yesterday. I am just trying not to think about it too much. There is too much pain right under the surface right now and I am not quite ready to face it yet.