ultrasounds and more ultrasounds

We are at every 2 weeks for ultrasounds now. Yesterday we got to have ultrasounds twice in one day... Boy was that a very long day!
I have been waiting to update until all my thoughts have been gathered together a little better, because yesterday  I wouldn't have been able to say anything nice about anything!
So yesterday was our 32 week ultrasound, and overall again there were no changes in movement really. He did go head down from the last ultrasound which was head up, (then by our next ultrasound appointment he was back to being head up). So he is rolling around in their at least, but what really disappointed me was that the tech spent a good few mins looking at his hands and he just did nothing with them. :( I'm so bummed. If we could have seen him do something with them, that would have given me a lot of hope! But he didn't move them at all. And I am feeling more kicks compared to Lua so I am not sure where those are coming from if his hands aren't moving. I already thought his feet werent moving and had hopes that his hands were doing the punching at least, but at least as of yesterday he was not moving them at all. He did change the position of his hands though, so maybe his muscle loss is more of the distal muscles, I don't know, I don't think there is a good place for their to be muscle weakness...
But he decided to get a little excited during the ultrasound, shooting his heart rate up to the 200s for a little while. Then staying between 170s -180s and then going down to normal. That was a cause for alarm, because when you are already high risk, any little tick is a red flag. The concern was for possible tachycardia going on. We were set up for an appointment in the childrens hospital in neenah to talk to the cardiologist there. We were to have another ultrasound done on his heart, and blood flow I guess, later that day. At that appointment they monitored his heart rate for about 45 mins and it never had any episode or get higher than 150s. He was breech though by the time we got to the ultrasound, little flipper! What they did find, though, was some fluid under his heart, which could cause the tachycardia, but she said it is possible for baby to catch a virus if I have currently been sick and he could be getting over the virus himself. I had a pretty nasty cold about 3 weeks ago before passing it to the rest of the family, so hopefully at the next ultrasound the fluid is gone and that is all that it was! With the diagnosis Lua had, there really are no signs of any heart issues in any of her conditions, but no one knows a lot about her condition so I suppose it is better to be safe and check it out. When she passed the ER doctor did say she passed away from heart failure... So I don't think this was a waste of time looking into, but I am SO tired of being at hospitals all the time. I'm not even kidding that I have been to the hospital 4 days this week already! From having severe back pain, I have had to start some physical therapy, and with all the ultrasounds, and normal OB appointments, I am Always there! And it is getting really old, very fast! But I feel grateful to have met this cardiologist doctor, she is in touch with a lot of people in Madison where we are planning on going if he is as bad as Lua was, so for me it is never a waste to make more contacts. I am just physically and emotionally exhausted!
Well, I came home with a fetal doppler to be monitoring his heart rate, and today I had to go to the hospital for a non stress test for an hour to watch his heart rate. The appointment today went really well. His heart rate looked pretty good, it never went over 160s, and he had a bunch of good acceleration, which oddly enough, is monitoring movement. So he moves when he has a monitor on him, but doesn't flinch when he is having an ultrasound. Typical man. The specialist doctor did mention that the heart rate going up and then going back down can be a sign of good connection between the brain and heart, which if this is all it was, that would be great! A good heart would be wonderful, one less thing to worry about! We are hoping that this will be the end of that journey, he has looked good so far, hopefully next appointment the fluid will be gone, and we will be ready, set go! Oh and hopefully he will decide to stay head down at some point here! The first ultrasound tech and the specialist doctor both mentioned (at different times) that he has a head full of hair! And that it looks wavy! Then at the other ultrasound we got to see his face and his little big forehead! He definitely takes after both his sisters!
At the start of this post, I mentioned how I needed to wait to update until I could say something good... Luckily todays scan went will with no concerns because I would probably still not be able to say anything great. I know that all of these things sound really good and what could be the reason I would be upset with these things? Well it is getting really annoying that problem after problem after problem keeps coming up. If he were to have heart issues on top of everything else that is already going on, I just don't think I would be able to handle anything anymore. I am already at the breaking point, just a tiny pin drop can tip me over to 100% losing it. No matter how hard I try to prepare myself for a baby that I at least hope could become a child with disabilities, it is impossible to not fantasize and imagine I will be having a perfect, healthy, normal baby like everybody else that is popping out babies. Then we have ultrasounds and I see the shape of his hands, his fingers not moving, the contracted fingers stuck in that position and I remember and know, oh yeah, I won't be getting that healthy little baby. The only thing I can wish for now is that he will be able to breathe on his own and we deal with the lack of movement. I wish so so so so badly I could rip this gene out of me so I wouldn't pass down such a terrible disease to my babies. It is very unfair to them. This thought process takes me down a very dark road of wishing I was living a different life sometimes. But today I got an email from my husband, reminding me how lucky we really are. We have one healthy daughter, and we had the most amazing, strong, baby who gave us some wonderful memories and I of course would never regret having her, she was so very meant for me. The same for our son, we will have a lot of complications and a very hard time, but we will get an amazing son out of it all. It can be hard to not compare your life to others, especially when you have facebook and no one has a problem with plastering how perfect their lives are all over the place. How easy it is for some people to have healthy baby after healthy baby, but it really is useless to look at other peoples lives and compare. I'm going to try to do that less, it is hard to not be jealous, but then I think that becomes a good time to get rid of facebook!