I never would have thought when I started this blog, that is suppose to be about life after losing my baby, that I could possibly be revisiting the same issues yet once again. I know I have probably said this or mention it before, but it really blows me away. Now looking at it, sure it makes sense, it is a genetic thing and it seems so obvious now that we would have another child with the same condition, but before I got pregnant I never even considered that there was ever a possibility that it would happen again. Or even when I was first pregnant and at our first ultra sound, I was positive that baby wouldn't have it because he was kicking and hitting so much, the tech even commented on how active he was and that was at 12 weeks. At 16 weeks with Lua, she was already not moving and they commented that she must have been sleeping, which sounded legit. Anyway, my thought process was 12 weeks an active baby is a great sign. 12 weeks with an active baby doesn't make much difference if the movement declines over time which now I know.
I really have't made up my mind yet on what we are going to do... First let me say I don't want him to die, I don't want to lose another baby. I don't want to have another baby that can't move and needs a trach, but I will take that over losing another baby. But when I tell the doctors I don't want to have the exit procedure, to them it is me saying I want our baby to die. No, no no.. I don't, I just don't want the procedure. The ENT doctor said they feel like they will be able to intubate, so why do I need to have a big procedure if it could be totally unnecessary? I wonder if it is to be part of a statistic, they don't do these procedures very often and any time they get a chance to practice on it I am sure it has to be good for them and the hospital. I could be very wrong, but it is the impression I am getting. It is times like these I wish I could see in the future, because of course if this is truly the only way we will have the best success for the baby and I would heal fine and there would be no problems coming from it, then sure, okay lets do it. I don't know if I am just being lazy and don't want to do the procedure because I don't want to, or that I truly believe it is just not necessary. I really do not know.. and I have No clue what will be best for baby either.
The best thing I have come up with for now is to go to Madison to have the normal csection and that way we have a pediatric ENT there that should be able to intubate. If I do this at Madison they will be taking me December 28th instead of January 4th, and I also would have to go to another appointment in Madison so they can take another ultrasound and then we can meet with all the doctors that will be apart of this and they can set up "palliative" care (making arrangements to keep baby comfortable until he passes basically, that being a day after birth or years later) and all that other crap. I felt comfortable with this decision, but lately I am wondering if this is the best decision or not. Since I feel like they think we are doing very little to keep him alive they might be too willing to let him go or not give him a chance to see how well he will do with little amount of intervention. I have an OB appointment tomorrow and maybe talking with him will give us the pull or push for the direction we need. Truthfully I trust my current OB do the csection more than I do the people in Madison and I feel more comfortable being at neenah childrens hospital with their neonatologist, but they don't have a pediatric ENT which is something I feel we need to have. Ugh, I really wish I didn't have to make this decision. I almost didn't have to too... We had this huge probably with our insurance not being able to switch over so that we could use madison and I was almost giving up and saying good at least we have our answer as to what we are going to do then.. but if we end up intubating baby and he needs a trach and gtube I want to be set up to go to Madison right away, I don't even want to risk going to Milwaukee at all, so that had to be switched and done with before having the baby.
On another note... I am kind of getting frustrated with people and what they think is being supportive. I really wish I understood if friends and family actually understand what is currently going on, or if they are assuming or have no idea at all and saying whatever comes to mind. I don't even know how to explain it, but people telling me "oh everything will be fine" does not help me what so ever. I remember when we were going for our first ultrasound in milwaukee someone told me, just never mind the baby is okay there is nothing wrong with him. Why would you say this? If you don't know exactly what is going on, don't say something that helps no one. It is so easy for people who have healthy babies coming into their future to not give a crap about anyone else. As long as it isn't happening to them! It would be like if I told someone with cancer, don't worry it will go away. Isn't that a little ignorant? Or simple? It isn't that simple to just get rid of cancer, they will have to do a lot of work and have a lot of ups and downs, and I understand being positive and saying good things to people, but blowing it off like it is nothing is not the right thing to do. That is what Everyone does with me. Don't worry God will fix everything. The baby will be just fine. You just have to be strong. Or my favorite, There is a reason for everything!
STOP IT! First off, I'm pregnant and hormonal, I lost my 7 month old just a year ago and I'm also still feeling very depressed, so I don't care if you think these things help you feel better about my situation but it absolutely does not make me feel better! I hate feeling like people are belittling my circumstances... which is why I have to believe that people just don't understand what is going on, In that case I of course will give them a break, and none of those people read any updates so they really only know what is going on from little posts from facebook or from talking to other people, who also have no idea what is going on. But oh well.. it is what it is. I simply get tired of having to be understanding to everyone else as they go through problems that to me sound so little, while they get to act like my problems are no big deal as well... I would never belittle other peoples problems like it seems everyone is doing to me. My rant for the day.
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