It may seem like I use this blog to complain a lot... ooops... But I really do have a goal for my honest, poorly written, blog posts... I really do hope that if anyone finds themselves in a similar situation, they find that there is something they can search and know that they are not the only ones going through whatever the situation may be. I know a few people who have had similar, or very similar situations, and they have been such a great support system for me! But the other day I wanted to find an article on "when you don't get to bring a baby home from the hospital" and there is very little out there. Some information from march of dimes, so those dealing with preemies, which is more common I think, than those who have kids with genetic disorders. I think some articles on still births as well, but I still didn't find a lot. Anyway that isn't the point... Our family have a lot of unique decisions we have to make, I think it is a lot of decisions that people don't usually have to even consider.
For example, (I hope I can word this right) I realized that when I talk to people who have never had a medically fragile child or someone who had no complicated pregnancies, they think it is INSANE that someone would do something that didn't mean keeping the baby alive. That was me before Lua, and with Lua. I wanted to do everything possible for her to live, because I am selfish, I wanted her, she was my baby and I didn't want to lose her no matter what that meant for her quality of life. So if I wouldn't have had Lua and someone told me that they are considering letting their baby go at birth if plan a, plan b, and plan c doesn't work, than I too would have been like... wow I would never do that, I would do anything for my baby.
Now that we know, though, the type of life that comes with this, it makes us have to think twice. I don't think that makes us bad parents. I think what people don't understand is how Lua lived. She couldn't breathe on her own, she couldn't eat without a tube, she couldn't move, she couldn't touch anything on her own, she couldn't move her head to look at whatever interested her, she couldn't kick or hit or roll. The only way she could do these things is with our help and we did our best to constantly do these things for her so she could attempt to develop like how a normal baby would. But I feel like her condition progressed quickly. We noticed at 6 months she stopped smiling. At first we thought she had nothing to smile about, but we started noticing her ability to do it was just not there anymore.
I know kids with SMA can lose the ability to smile and live for more years, but since apparently no one knows squat on Lua's condition, we really don't know if her passing was from how weak her condition made her or only from the sickness she had. Most likely a combo of both.
I'm really not making these decisions lightly, but I am making these decisions from a different perspective. If baby is so bad that he needs this type of birth done in order to breathe, that would make him even worse than Lua, and I'm not sure I could go through that. I feel terrible thinking that and writing that down. I would love to believe that I would always have that mind set of doing anything possible to help my child live, and after seeing baby and having him here with us, I'm sure our opinions will change. It is always different when the baby is with you.
I don't know...
I simply don't know.
Here I want to have encouraging words to someone in the future and I can't even get my thoughts together, but that is what the reality is. It is very confusing.
Some things I hate about this though...
I hate feeling like I'm a failure to Thiago's and my families. I know no one probably thinks that or would feel that way, but the fact we have had 2 babies that had these conditions, one baby that has died, I wonder if Thiagos parents wishes he would have been with someone that could give them healthy grandkids like their other kids can. I wonder if my parents think the same. It just feels bad to know you have failed so much at something that comes so easily for many other couples. I don't want to think or feel like this, but I do.
I wish this baby would be getting the before Lua parents. Maybe we would be stronger for him. But the truth is we ate some of the apple, so to say. and the innocents is forever gone from us.
Well on wednesday we head to Madison to be evaluated by the doctors there and get a second opinion and hopefully make the decision on how we want to deliver. As of now we set a date for the csection at Neenah hospital for January 4th, so if we don't change our minds on where we are going to deliver, that will be the day that our many questions will finally be answered. I am getting anxious. I can't wait to see this baby's little face.
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