30 week ultrasound

Sometimes I forget how things are actually going but then we have ultrasounds and I remember! We had no real changes in our last ultrasound. He was head down at our last one but now he is head up, so I guess that is proof he has moved, I don't think they are counting that though... They also couldn't see the outflow tract with his heart, I think that is the term... and his chest looked smaller than his stomach, they arent sure if it was just how he was sitting or if that is actually how he is growing, which isn't good, and wouldn't 100% surprise me because Lua's chest was a bit sunken in as well after she was about 2 to 3 months old. He still have very little movement, but I think there was more movement this time around but it still isn't how they want.. They want stretching and kicking and jabbing all over the place, and he just isnt doing that. He is breathing and having hiccups, but so did Lua. His growth is about 52% so technically growing well. We will go back in 2 weeks to see how he is doing then, they aren't sure what the rate of still birth would be with a situation like ours, probably not very common since he isn't moving, less chances of him doing much with his cord I'm thinking, but who knows. He does take some great pictures though! The kid is photogenic! It is like we totally can tell what he will look like now, like we took a straight up black and white picture of him.

Most of the time I have to go around not thinking that we are going to have a baby with a type of muscular dystrophy, if I think about it for too long it insanely breaks me down and I can't handle it. Then sometimes I catch myself making up this fairy tale life that I have to then bring myself back to reality. No you won't get to go to the local hospital and deliver a normal healthy baby, no you won't be able to come home 2 days after giving birth, no we probably wont be able to use certain clothes that I have already bought for him because he may come with extra equipment. If I don't remind myself every now and then that this isn't going to be like how it was with our oldest daughter, then I will have a very hard reality when he is born, and I need to be prepared for the worst to happen. But I dislike this feeling of being a virus for a child to live and grow in... I hate that I have to be different than normal people and how they carry their children. I really hate how everyone around me, that know our situation, act like everything will be okay and because they are praying for us and they have asked for his healing, then that'ts it and I'm wrong for thinking our child will be born with disabilities. That isn't how genetics work, and I'm carrying him everyday, I'm keeping count of all his kicks and movements and I know they aren't normal. I appreciate all the prayers and I know they can help the situation, but to believe that he will be 100% healthy is not the way it is going to go, and it is hard for anyone else to truly care when they are not the ones who will have to deal with it. If you pray and my baby comes out not breathing just like Lua, what loss is there for you? None. You don't have to live the life we will then be having to live. You wont be making the difficult decisions we will have to make. It will be a situation like, "Oh shoot...I was really hoping things would turn out better.." and then you move on. Like everyone did when Lua died... Aww we are really sorry.. but we have our own life to live and we can easily move on, unlike the parents who get to live every single day thinking about it, seeing the missing link in their family. I'm really talking about one specific person who does this to me so maybe this comes off pretty harsh, but I'm just so tired of living like this. The mother who lost her child... the mother who has another child with complications... I don't know. I wish I would have realized that 1 in 4 chances of having a child with the same condition was a lot higher risk than I originally thought. I believed because we had one healthy child it had to be less than that. Oh well, living in a pity party for sure won't fix anything.

My husband brought up something that I haven't thought about doing really... the fact that we have something special that we can share with people that find themselves in similar situations, and that is all the good moments we had with Lua. Those are the stories that should be written down, that should be told, because although we lost her we had almost 7 months with her and she made us so very happy. We were very blessed with every month we had, even if many many many moments of every day were spent being scared and overwhelmed, her face made it all better.

I think one of my favorite days with her was the day Thiago took his mom back to the airport and May spent the night with my parents. It was just me and her all afternoon into the evening until daddy got home. We played on the floor.. that is when I thought about doing the balls on her legs to help her move them with ease. She Soo got a kick out of that. And that was the day I had to sing lollipop to her over and over and over and over. Every time I would sing it to her she would just smile and smile! I don't know why but she just Loved that song!!! If she started getting upset that was the only thing I could do to make her happy. I had to take her all over the house with me since I was the only one home that could keep an eye on her, and it was actually really fun doing that. She didn't need to be suctioned every 2 mins that day, and she was just the giggliest funny little baby, well as long as I kept singing lollipop.
Thinking of these days really help me to try to relax over what happens with our baby boy because I know we will love him so much and he will give us joy just like Lua did, and we will have some great times with him just like her. But sometimes I think it was irresponsible to thin about having another child, especially so soon after losing Lua, knowing what we know we will have to face. Our oldest daughter has come down with a sickness today and just that hurts seeing the little ones sick like that, well we had to watch Lua suffer every time she got suctioned, just breathing was difficult for her because of having to go into the trach to get secretions out. Watching her try to move really really hard but not able to move more than a few inches, was devastating to watch... how could we do this to another baby. That is my daily struggle, only wish some things could be different. 

Some pictures from the day Lua and I had that I mentioned earlier. The top is her reaction to me singing lollipop.. she couldnt smile of course because the phone was up and she has to make sure to stare when the phone is in her face ;)

Little Mr and his adorable little face