She was a Girl

Found out that Augustine was a girl.

3 Days

3 days have gone by since Augustine passed away and I feel lost. I know that this would be the perfect time to find a project to bring all of my attention to, but honestly, I just don't care. At this moment in time nothing really has much meaning. I know that life goes on and as time passes things will possibly get easier, but at this moment nothing really matters much to me.
There is definitely a tattoo in the works, that I hope to get as soon as i'm off of these meds, but I find it hard to focus on coming up with ideas for it for longer than 5 minutes. It also doesn't help that I can't draw. Found some cool photos of things online, but still wish that I could draw some things out. Probably even if I could draw it would be hard to find my focus right now.
This may sound dumb, but the more days go by, the sadder i've been feeling because that may be less that I remember how my baby felt when she was kicking around in my stomach. I miss everything about being pregnant. Being tired, hungry, reading all the good pregnancy books, and I even miss the heartburn. I just want all of those feelings to come back because it means she would be back with me again. I know that i'll never forget about her or how she felt, but I feel like something has been taken from me. Something that i'll never get back.
The feelings that I feel May possibly lessen over time. However, the horrible sense of losing a child will stay with me forever and I am now part of that list that nobody wants to ever be a part of. Nobody should ever lose a child. Even though we didn't get the chance to know our child personally, we still grew to know her over these 5 months and were looking forward to those drawings that she was gonna put all over our refrigerator and all of those things that we were gonna teach her. Those feelings of loss will never go away.

Goodbye Baby

Yesterday Augustine Alexander passed away. It was the saddest, and most tragic day of my life. I know that the decision we made was the right one, but I will always be saddened by the fact that my first baby did not make it. There are really no words to express how horrible and empty I feel right now. I miss having her in my belly feeling her moving every now and then, even though I know that she wasn't made the way she was supposed to be. In my mind she is perfect, and has affected me in a way that I am forever changed.

Kicks

I am already missing her kick, even though it's not all that often. That is what I will miss the most about my little one.

Getting Up

Over the last week i've experienced every emotion that you can possibly imagine. I'm not gonna go through the whole list and write them all down. If it comes into your mind, i've probaby been through it.
There are really no new details upon the last few days, other than my Midwife's office is filing an appeal with the insurance so all we can do it wait on that, and yesterday I got an amnio to see the exact details on what is really going on inside my belly with this baby.
I'm really needing to use my art to express how i'm feeling. Photography is something I need to be doing instead of sitting here at the computer researching and constantly obsessing over this whole situation. However, I can hardly bring myself to even take the camera out of the bag. Nothing really is motivating me right now. On the other hand, Amir has created three new songs since we found out our horrible news. I guess that's the difference between us. I'm trying to become more motivated to find something to fill that void right now, but sometimes the feelings are so strong it is hard. The feeling of positivity from all of our friends has been amazing and that is something I need to use in this moment.

Never Saw it Coming

It turns out the we were wrong with our prognosis from earlier. What our unborn child suffers from is called Holoprosencepaly, meaning that the brain hasn't formed properly, and because there are missing parts to the brain this has affected the forming of the face.
As of the other day, my plan was,because the child will never have a life where it is even able to be conscious, that I would go to the hospital to be induced and birth the child. However, yesterday we learned that the insurance will not cover this procedure because my life isn't at risk. What they don't seem to understand is that my life is completely at risk because in the next 4 months ,and maybe even more, all of the emotional stress can and probably will come out physically.
The whole thing with the insurance still shocks me. We went through many avenues with the insurance. We had my husband's work call from the corporate level. We had my midwife call. We had my midwive's financial advisor call and nothing came of it. So now i'm forced to go through this pregnancy until the end whether the baby dies in utero, or comes out alive. This is a completely life changing situation that I never saw coming. I guess that nobody ever would.
If anyone reading this knows of any support groups with parents of children with this horrible disease i'd appreciate to be informed on this information. I'm doing as much research as I can and trying to live everyday just as that.

Forever Changed

The other day the most horrific thing that you can possibly think of happened to me and my husband. We went to my midwife appointment filled with excitement about finding out whether our baby was gonna be a boy or a girl. Turns out what the doctor told us would forever change our lives. Our child has anencephaly, which means that part of their brain never formed, and the top of their skull is also not there. Aside from this the little one was going to have extreme cleft palate, the eyes were extremely bulged out because of the non formation of the skull, and there was not a nose. This is something that nobody goes to the doctor expecting and when he told me I thought that I was in some sort of extreme nightmare. They had us do a level 2 ultrasound to make sure that what they saw was right. It was. My options were to carry it to term or end it now. I really respect all of the women who can actually go through with carrying this out fully, but I cannot. I am not made that way. My child will be born deaf, blind, and never consious. The only reason it can even breathe and have a heartbeat is because that part of the brain actually developed properly.
I am trying to stay as positive about this whole situation as I can, but at times I find that brutally difficult. It's hard for me to take that I'm a really healthy individual who did everything right (or so I thought), and still had something this awful happen. Especially when I see other pregnant women not taking care of themselves, eating fast food constantly and drinking soda. But I cannot focus on what they are doing, as I am me,and need to worry about myself and come to terms with this whole thing.
I'm terrified of being induced because then the baby that is in my belly will no longer be with me. As much as it hurts me when I feel him kicking I love it too because soon I will not have that feeling at all. I loved this baby more than anything and shared so much with it these past 5 months. It's hard to imagine going to the hospital to "birth" this baby, and coming home empty handed and no longer pregnant. There is such an emptiness that I feel that I know will never go away. This is something that I will carry with me for the rest of my life, even if I do have another child. This was my supposed to be my first born, the first grandchild, but it will never be.
Mostly, i'm gonna miss carrying the little one around with me in my everyday. We thought that we made it halfway, but mistakenly fell short. Even though this child was never meant to really experience life, we still have gone through so much together and i'm gonna be extraordinarily sad to see it end this way.

RIP: Augustine Alexander
August 2009-December 2009