I've almost had more dreams about our baby boy that hasn't been born yet, than Lua! I get so frustrated that I almost never get to have dreams about her.... But either way, I was very excited in that dream... that is how little I am hoping for, for him to just have head control, be able to sit up, be able to turn his head, this is crazy to me... just these few little things would BLOW us away, that is when I remember how bad Lua really was. That is so devastating to me.
I tend to frequently look up the gene that was changed in Lua to try to figure out what can be done for this baby, looking for any doctor that specializes in it, or if they have any experimental trials going on. Medicine is getting very close to helping a lot of muscular dystrophies, which is very exciting! But I don't think the plec gene is in the same category that they are researching for muscular dystrophies, but I am not sure, all of that is very confusing and complex!
I was reading some information on the plec gene last night and I came across a condition that happens when the plec gene is changed where 2 out of 3 infants pass away before they are a year old. Some pass away from respiratory failure too, the problem with this condition is it severely effects the skin. So they say because she didn't have any issues with her skin the type of condition she had was Limb girdle musuclar dystrophy 2Q... but the cases they have reported for LGMD 2Q are not severe like Lua was.
Well whatever the case... someday I need to find a simple explanation to explain to people what our situation was and possibly will be. Apparently no one wants to just ask me questions, everyone wants to either ask my mom or just assume they know everything and understand completely the situation we are in. I really don't understand why people can't just ask me. Oh well. Anyway...
Today we had another ultrasound, finally an appointment that didn't totally suck!
His fluids are still looking good! Every appointment this is what has me on edge! I know if that fluid goes up that means he stopped swallowing and possibly stopped being able to breathe. But it was literally perfect! He was practicing his breathing during the ultrasound again too, which is great to see! With his breathing practices it also makes him move a little bit, even if it is just effects from breathing at least it is some type of movement. He is estimated at being 5lbs 7oz, which would be wonderful if that was spot on! They say give or take a pound. Even if he is 4lbs. 7oz, we have about 4 more weeks, if he gains another half pound each week, that would be an extra 2lbs getting him to 6lbs 7oz, which would be wonderful! I have read if a full term baby is under 5lbs 10 oz (I'm guessing on the oz) that is strong evidence of a muscular disease. So if he can make it to 6lbs that would already give us better odds than what we had with Lua. We have a few great things going on that I pray pray pray will continue to move forward.
My maternal fetal doctor, who does the ultrasounds, also said he could be in the delivery room, if everything works out with his schedule he can try and plan on that, which would put me a lot at ease! He knows so much more about the situation than our new OB and it would just be great to have the extra support! He is also thinking he doesn't want me going into labor on my own in waupaca so he feels like inducing at 39 weeks would be the best time. He must not know that we drove an hour and fifteen mins when I went into labor with Lua to get to the hospital.
Baby boy is still breech!!! And now he has become a flight risk with his flipping back and forth, so if he continues to do this we may just sign up for the c-section. I'm for sure not going to try to turn him from the outside, so if he doesn't go head down on his own and stay there, I'm not even going to debate on that vaginal vs. c-section discussion anymore.
Finally got a better look at his hand
He has always kept that hand up by his face...
those lips!
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