Monday, October 1, 2012


Today was a weird day full of mixed emotions, from one extreme to another
Yesterday was also hard and full of dark places full of statistics and thoughts of burial. I even threw up my dinner, which I am attributing to stress.
Then last night Mickey sat in front of me and listened to my belly with a stethoscope. I imagine he only heard my bowels, but he did irritate Auguste enough to get him moving around, and so we both slept peacefully.
Today also started off bad. I got a well intended email that said "we all want healthy pregnancies, but more than that, we want healthy children". I am not an idiot, and can read through the lines of that. I then had a friend ask if there were actually babies that survived this? Truth, YES! There are babies that survive this. Hydrops fetalis is found in 1/3000 pregnancies, and the survivors are harder to find yet, but the statistics remain at 10-25%. And YES! Many of those babies live healthy lives and are happy healthy children. I guess I just started feeling mad. Angry that this happened in the first place. And angry that I felt immediately as if Mickey and I were going to feel the need to defend our decisions to fight and advocate for Auguste's life.
We have many unanswered questions still, and we do not know what the future holds. We do not know if we will be blessed with a miracle and this fluid will be gone soon. Or if we will have to try to seek someone to consider a thoracic shunt, which is not standard of care but I have seen some success stories that did this (considered a minimally invasive procedure but sounds scary to me). Will we have to make decisions that could possibly put him at risk but potentially save him. Will we need have to consider his quality of life and will there be decisions we have to make after he is born, will we have to think about burial. There are many hard things we may indeed have to face in the future and Mickey and I will do the best we have with the information we are given. Mickey said tonight that this is why he doesn't like to share things with everyone, because he feels like people will give their advice and it isn't always what you want to hear.
So, depressed and feeling down and angry, I spent the first half of my lunch break calling my Pappy's voicemail over and over again and listening to his voice...because he would have known what to say and he would have known what to pray, and I always felt more confident God heard his prayers that mine.
I spent the second half of my lunch break talking to my last living grandparent, my Ma Ma, and she doesn't get on the internet and she is confident things are going to get better, and she trusts God to answer her prayers and she truly has hope that he will answer them in the way we want to be answered.
I felt better after that.

When I first found out I was having a boy, I told one of my best friends Melissa and the first thing she said was "Oh my God, you are going to have the cutest Christmas cards!!!" I laughed and said "That is why we are friends, because I thought the exact same thing!!!" Today she told me "Lisa, you just need to keep positive, and keep envisioning that 2013 Christmas card with Auguste in the photo". So that is what I have done the rest of the day.

I did go have fetal heart tones done today and they were strong at 146. He has also been moving more this evening. I asked the nurse how she was so good at telling the difference between movement sounds and heart tones. She said probably just years of experience, but not to worry, give it a few weeks and I will be feeling a lot more movement. This brought tears to my eyes and I said "I hope so". She was so confident and she just said "oh honey, you will". I just cried. I don't know how much she knew, but she held my chart and she made me feel so much better and I felt like my tears at that moment were tears of happiness.

I came home, made dinner, finished the laundry that I didn't do this weekend, decorated our house into a "spooky house", and listened to three super heroes laughing and running around the house in capes. It was a good night.

So, Mickey and I will continue to advocate and do whatever necessary in the next few weeks to ensure we are exploring every possible avenue for Auguste. And I will continue to picture our 2013 Christmas card with his sweet face as part of it. Until then, we will enjoy this photo that Bluebird (Eliot) drew for us tonight.

I told my mom I felt glad that I was the only one of us that got a body, but she promptly pointed out that I also was the only one who got big thighs. I just LOVE that she drew in Auguste when drawing our family. Because he is indeed a part of it.

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