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.
Monday, December 21, 2015
Thursday, December 17, 2015
the breaking point
We finally met with Madison doctors yesterday. It was a long time coming, I think I knew we would always end up meeting with them but I was really hoping we would never get to that point.. but we did. We got a targeted ultrasound done and an echo ultrasound, both of those together took around 2 hours. 2 hours of laying on my back having my stomach poked and prodded so they could gather as much information as possible. According to the MRI his neck is flexed down to his chest, for the ultrasound they said his head is flexed down but to the side now. They believe with this head being constantly flexed that he has a contracture in his neck now and they don't think he will be able to extend his head back when he is born to be able to breathe. They also think from being in this position his airway will automatically collapse when he is born.
So we have a few options, basically the only option that gives us the best chances of survival would be this exit procedure I have previously mentioned. All of our options have ups and downs about them. While the exit procedure gives us the best option that he will get an airway and give us time with him, it could end up in an automatic trach, I will be left open while they try everything to get his air way giving me more risks for infection and more blood loss. The incision doesn't heal as well as a csection incision, and if they arent able to intubate, scope him, or do an emergency trach, then he will pass away and since I am being put under for this procedure, Thiago won't be with me or baby and neither of us will be able to be with our son if he passes away.
If we feel like we want to take the chances or we feel like we don't want him to have a life with a trach, gtube, and no movement, then we could have a normal csection, they can attempt to intubate and if they fail then they will keep him as comfortable as possible and we can spend whatever time he has with him.
Now that he has decided to go head down, at least for now, I also have the option to do a vaginal birth which would be the safest for me, probably most risky for him but then we have the same options, they try to intubate him and if it is unsuccessful then we comfort him for as long as we have with him.
With all of these options, we also have other options as to where we want to do this. Exit procedure has to be done at Madison, but we could also do the csection or vaginal birth at neenah or madison, just depends on what we choose is best for us. So we have the most difficult decision any parent could have to make going on right now. I truly do not know what to do. Each option come with what ifs. Doctors keep telling us that whatever we decide is the right decision... but how can that be when it basically comes down to possible life, or death? I do not want to be responsible to be making these decisions. I don't want to say good bye to another child, I'm not even 30 years old and I have the possibility of losing 2 children already. But I also don't want to give him a terrible quality of life and see him suffer. How in the world will we ever make the right choice?
I'm hoping something comes together for us so we will know what the best option will be, I wish there was something that would just push us one way or another. Until then, I am at the point where I am just going to enjoy carrying him and give him as much love as I possibly can while he is still with me. I've been spending time in the nursery, taking pictures of his ultrasound with his sister, so they can have at least something together, some pictures of my belly in his nursery, the things we have gotten for him... things like that.. I'm tempted to take my belly (just take it right off) and get a picture with Santa, all those fun things that we might miss out on. I just hope that we can be happy with whatever our lives become, with whatever decisions we decide to make, have no regrets and trust that we did the right thing for all of us.
If we feel like we want to take the chances or we feel like we don't want him to have a life with a trach, gtube, and no movement, then we could have a normal csection, they can attempt to intubate and if they fail then they will keep him as comfortable as possible and we can spend whatever time he has with him.
Now that he has decided to go head down, at least for now, I also have the option to do a vaginal birth which would be the safest for me, probably most risky for him but then we have the same options, they try to intubate him and if it is unsuccessful then we comfort him for as long as we have with him.
With all of these options, we also have other options as to where we want to do this. Exit procedure has to be done at Madison, but we could also do the csection or vaginal birth at neenah or madison, just depends on what we choose is best for us. So we have the most difficult decision any parent could have to make going on right now. I truly do not know what to do. Each option come with what ifs. Doctors keep telling us that whatever we decide is the right decision... but how can that be when it basically comes down to possible life, or death? I do not want to be responsible to be making these decisions. I don't want to say good bye to another child, I'm not even 30 years old and I have the possibility of losing 2 children already. But I also don't want to give him a terrible quality of life and see him suffer. How in the world will we ever make the right choice?
I'm hoping something comes together for us so we will know what the best option will be, I wish there was something that would just push us one way or another. Until then, I am at the point where I am just going to enjoy carrying him and give him as much love as I possibly can while he is still with me. I've been spending time in the nursery, taking pictures of his ultrasound with his sister, so they can have at least something together, some pictures of my belly in his nursery, the things we have gotten for him... things like that.. I'm tempted to take my belly (just take it right off) and get a picture with Santa, all those fun things that we might miss out on. I just hope that we can be happy with whatever our lives become, with whatever decisions we decide to make, have no regrets and trust that we did the right thing for all of us.
Monday, December 14, 2015
I have a lot of thoughts...
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.
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.
Saturday, December 12, 2015
crunch time
I had my normal OB appointment yesterday where he had been updated that we were going to go ahead with the exit procedure. We unfortunately decided that we do not want to go this route. We feel that baby will be able to be intubated and if he really can't, we feel that then that is probably a sign we should let things be. The OB was totally fine with our decision and he was ready to start setting up a date for the csection. Our baby is still breech, he probably can't get head down anymore with the little movement he has, so a csection is necessary. But our OB is pretty funny, he said he likes doing breech deliveries but he could never recommend doing it for us because the lack of mobility. Hah, I still for some reason find that funny that he enjoys doing breech.
We were able to get the results of the MRI at the OB appointment as well. It was like looking at the report they must have made when Lua was first born. Almost EVERYTHING on their was identical to what was said about Lua when she was first born. Except on the report almost everything says, possible - could have - strongly feel.. a lot of assuming words, but none the less they say by the looks of him he is pretty bad. Contractures everywhere, club foot, cleft palate, severe kyphosis, cramped and no movement. Yeah Lua had club foot and cleft palate too, and some how those thins disappeared? How does that happen? I didn't know a cleft palate could just go away? I really hate when these doctors are making "educated" guesses. Whatever.
After our OB appointment, like literally 10 minutes I got a call from Madison to schedule a time to go down their for consultation and set up a time for the csection. I had to tell her we changed our mind and wanted to stay at Neenah. She told me that our doctor called and said that wouldn't be possible at all anymore, and it became a rather weird conversation so I told her I would call her back. I made Thiago call our specialist and tell him our thoughts and he was not happy. He was really surprised to hear that we are okay with letting things be if they aren't able to intubate him. He never got that message from us that that would be something we would be okay with. He really wants us to go to madison and get a second opinion if nothing else.
It is really hard to try to explain this, I mean no we are not okay with watching another baby go, but I cannot take another baby home on a trach and have to be responsible to keep them alive again. It didn't work the last time and I cannot go 7 months or under a year and watch another baby die at our home, I don't want to do it. It is way too hard. Possibly losing a child at birth for me, as hard as it will be, feels like it would be easier than to get attached and then have to say goodbye. But what if the child doesn't pass away like last time... yeah well if he can't breathe at birth, if he can't move, his chances for survival are slim, we know this because we were told this over and over and over and over again while we were in the NICU. We were told many times how weak Lua was, oh I just don't see her ever doing anything, she wont live to 6 months, she doesn't have any muscle what-so-ever...
I don't want to hear this crap again. But the reason our specialist never got this vibe from us is because I never believed he was worse or as bad as Lua... but I should have known.. should have known this wouldn't be easy. I just honestly thought we would be able to have another child that was healthy. I see all these people having kids after their loss and they all have healthy happy babies. I truly thought that would be us. I thought we deserved that. But that isn't how life works. We have bad genes and that is how it works. I wish I wasn't jealous of every person having their healthy babies right now and everyone who will be having healthy babies, but what are you going to do?
Yet, of course once the baby is here, and if he needs a trach and we have to go down that road again, then we will because we have to and that is all we can do, and just hope something will be different this time.
Anyway, the lady from Madison ended up calling me again and I told her what we were thinking and why we wanted to stay closer to home. I explained that it was very difficult with our previous daughter and it was just so hard watching her pass, we really don't want to have to do this again. She was so understanding and said that is 100% understandable and is my right to feel that way. I told her how our specialist really wants us to get a second opinion though, so we ended up setting a time that we can go there and be evaluated. It has to be pretty quick here so we will be going next week and we will meet with many different doctors and have a few different tests done and then we can talk and discuss a plan that will be best for us. I only feel strongly to do this because it is a different hospital and hopefully they will think, see, or do something differently than milwaukee. She also told me they usually do try to transfer babies to a nicu closer to home if it is possible, when we asked milwaukee this when we were waiting for Lua to either get off the vent or get big enough for a home vent, it was a flat out no because they were the best hospital for us. . . at least madison is willing to consider already.
We were able to get the results of the MRI at the OB appointment as well. It was like looking at the report they must have made when Lua was first born. Almost EVERYTHING on their was identical to what was said about Lua when she was first born. Except on the report almost everything says, possible - could have - strongly feel.. a lot of assuming words, but none the less they say by the looks of him he is pretty bad. Contractures everywhere, club foot, cleft palate, severe kyphosis, cramped and no movement. Yeah Lua had club foot and cleft palate too, and some how those thins disappeared? How does that happen? I didn't know a cleft palate could just go away? I really hate when these doctors are making "educated" guesses. Whatever.
After our OB appointment, like literally 10 minutes I got a call from Madison to schedule a time to go down their for consultation and set up a time for the csection. I had to tell her we changed our mind and wanted to stay at Neenah. She told me that our doctor called and said that wouldn't be possible at all anymore, and it became a rather weird conversation so I told her I would call her back. I made Thiago call our specialist and tell him our thoughts and he was not happy. He was really surprised to hear that we are okay with letting things be if they aren't able to intubate him. He never got that message from us that that would be something we would be okay with. He really wants us to go to madison and get a second opinion if nothing else.
It is really hard to try to explain this, I mean no we are not okay with watching another baby go, but I cannot take another baby home on a trach and have to be responsible to keep them alive again. It didn't work the last time and I cannot go 7 months or under a year and watch another baby die at our home, I don't want to do it. It is way too hard. Possibly losing a child at birth for me, as hard as it will be, feels like it would be easier than to get attached and then have to say goodbye. But what if the child doesn't pass away like last time... yeah well if he can't breathe at birth, if he can't move, his chances for survival are slim, we know this because we were told this over and over and over and over again while we were in the NICU. We were told many times how weak Lua was, oh I just don't see her ever doing anything, she wont live to 6 months, she doesn't have any muscle what-so-ever...
I don't want to hear this crap again. But the reason our specialist never got this vibe from us is because I never believed he was worse or as bad as Lua... but I should have known.. should have known this wouldn't be easy. I just honestly thought we would be able to have another child that was healthy. I see all these people having kids after their loss and they all have healthy happy babies. I truly thought that would be us. I thought we deserved that. But that isn't how life works. We have bad genes and that is how it works. I wish I wasn't jealous of every person having their healthy babies right now and everyone who will be having healthy babies, but what are you going to do?
Yet, of course once the baby is here, and if he needs a trach and we have to go down that road again, then we will because we have to and that is all we can do, and just hope something will be different this time.
Anyway, the lady from Madison ended up calling me again and I told her what we were thinking and why we wanted to stay closer to home. I explained that it was very difficult with our previous daughter and it was just so hard watching her pass, we really don't want to have to do this again. She was so understanding and said that is 100% understandable and is my right to feel that way. I told her how our specialist really wants us to get a second opinion though, so we ended up setting a time that we can go there and be evaluated. It has to be pretty quick here so we will be going next week and we will meet with many different doctors and have a few different tests done and then we can talk and discuss a plan that will be best for us. I only feel strongly to do this because it is a different hospital and hopefully they will think, see, or do something differently than milwaukee. She also told me they usually do try to transfer babies to a nicu closer to home if it is possible, when we asked milwaukee this when we were waiting for Lua to either get off the vent or get big enough for a home vent, it was a flat out no because they were the best hospital for us. . . at least madison is willing to consider already.
Thursday, December 10, 2015
MRI
This will be fun to explain....
So, MRI.
We have the results. Basically it comes down to the fact that his airway is open, but it is narrow. They aren't going to say for sure if he will be able to breathe or be intubated easily at birth or not. It is childrens hospital anyway, and they make sure to cover their end as well as possible, so if they can make something sound terribly bad they will do it! That is their motto!
"Childrens, because here we give you only the worst news possible!"
My maternal fetal doctor called today to give me his recommendation. They are very worried he wont be able to breathe and he wont be able to be intubated at the Childrens hospital in Neenah, so he thinks what is best is to do an Exit procedure.
Ever heard of it before? Probably not unless you were to have needed it or watched the documentary on Netflix on how they do surgery on babies inside the womb. Well it is just the most delightful way to deliver, every mothers dream labor and delivery possible...
The EXIT is an extension of a standard classical Caesarean section, where an opening is made on the midline of the anesthetized mother's abdomen and uterus. Then comes the EXIT: the baby is partially delivered through the opening but remains attached by its umbilical cord to the placenta, while a pediatric otolaryngologist-head & neck surgeon establishes an airway so the fetus can breathe. Once the EXIT is complete, the umbilical cord is clamped then cut and the infant is fully delivered. Then the remainder of the C-section proceeds.
So, MRI.
We have the results. Basically it comes down to the fact that his airway is open, but it is narrow. They aren't going to say for sure if he will be able to breathe or be intubated easily at birth or not. It is childrens hospital anyway, and they make sure to cover their end as well as possible, so if they can make something sound terribly bad they will do it! That is their motto!
"Childrens, because here we give you only the worst news possible!"
My maternal fetal doctor called today to give me his recommendation. They are very worried he wont be able to breathe and he wont be able to be intubated at the Childrens hospital in Neenah, so he thinks what is best is to do an Exit procedure.
Ever heard of it before? Probably not unless you were to have needed it or watched the documentary on Netflix on how they do surgery on babies inside the womb. Well it is just the most delightful way to deliver, every mothers dream labor and delivery possible...
The EXIT is an extension of a standard classical Caesarean section, where an opening is made on the midline of the anesthetized mother's abdomen and uterus. Then comes the EXIT: the baby is partially delivered through the opening but remains attached by its umbilical cord to the placenta, while a pediatric otolaryngologist-head & neck surgeon establishes an airway so the fetus can breathe. Once the EXIT is complete, the umbilical cord is clamped then cut and the infant is fully delivered. Then the remainder of the C-section proceeds.
So this is the recommendation that we have from our specialist that we do. If Madison doesn't want to do it, then the only place we could do it at is Milwaukee.
I am struggling with this because everything is based off of a hunch. The problem is they are relying on the ultrasounds 100% and they believe he has a very strong contracture in his neck and his head wont be able to flex when he is born. I cannot believe he is worse than Lua was, and if they could intubate her, I cannot image they really would struggle at intubating him, but by the sounds of it, he sounds like he is equally bad if not worse. Except we don't know. The term, better safe than sorry, floats around every doctors head I suppose.
I some what wished that we would have done nothing with this pregnancy. Get a midwife, have the baby at home and whatever will be will be. Instead of getting doctor after doctor involved so they could tell us crap after crap after crap. The interesting thing is they didn't even want me to end the pregnancy. The genetic counselor asked if we had considered and when we said no she said, Oh good because it would be really difficult to do that.. What is the deal? I thought everyone was offered to end pregnancies these days. I mean I wouldn't have done it no matter what, but I find it interesting how much crap news they give us all the time and they never pushed for it. I strongly believe that the more medical attention you get, the more likely it is that you will have things done that are not necessary for you, or whoever else may be involved. So do you stand against every doctor and go with your gut, when you have no medical experience or knowledge? Probably not, you trust doctors to be making the decision that best suits you. I trusted the doctors knew what was best for Lua... the 30 calls I made when she got sick and the 30 times they said do nothing, just watch her, just do nothing, dont give her medicine, dont bring her to the hospital, lets just keep an eye on her. I trusted they were right. So therefore I got to watch my baby die because I thought they knew what was best.
So this decision is a difficult one for me. I do trust our maternal fetal doctor, who I don't trust is milwaukee childrens because they have only shown us over and over again how much they get wrong. I suppose I'll just go with the flow on things, I mean how bad could it end up? Worst cases will end up being for me and not the baby anyway. Say something goes wrong and they have to end up doing a hysterectomy on me or something like that and so I no longer have the option to have any more kids. Which would probably be for the best anyway, I don't think any future kids want to be born from us, we can only provide them with weak muscles and lack the ability to breathe. So are the risks that risky? Probably not. But do I question if it is necessary? 100% I do. I really don't feel like it is necessary to do this procedure. Now we just need to think on how badly we want to go against the doctors recommendations.
I am struggling with this because everything is based off of a hunch. The problem is they are relying on the ultrasounds 100% and they believe he has a very strong contracture in his neck and his head wont be able to flex when he is born. I cannot believe he is worse than Lua was, and if they could intubate her, I cannot image they really would struggle at intubating him, but by the sounds of it, he sounds like he is equally bad if not worse. Except we don't know. The term, better safe than sorry, floats around every doctors head I suppose.
I some what wished that we would have done nothing with this pregnancy. Get a midwife, have the baby at home and whatever will be will be. Instead of getting doctor after doctor involved so they could tell us crap after crap after crap. The interesting thing is they didn't even want me to end the pregnancy. The genetic counselor asked if we had considered and when we said no she said, Oh good because it would be really difficult to do that.. What is the deal? I thought everyone was offered to end pregnancies these days. I mean I wouldn't have done it no matter what, but I find it interesting how much crap news they give us all the time and they never pushed for it. I strongly believe that the more medical attention you get, the more likely it is that you will have things done that are not necessary for you, or whoever else may be involved. So do you stand against every doctor and go with your gut, when you have no medical experience or knowledge? Probably not, you trust doctors to be making the decision that best suits you. I trusted the doctors knew what was best for Lua... the 30 calls I made when she got sick and the 30 times they said do nothing, just watch her, just do nothing, dont give her medicine, dont bring her to the hospital, lets just keep an eye on her. I trusted they were right. So therefore I got to watch my baby die because I thought they knew what was best.
So this decision is a difficult one for me. I do trust our maternal fetal doctor, who I don't trust is milwaukee childrens because they have only shown us over and over again how much they get wrong. I suppose I'll just go with the flow on things, I mean how bad could it end up? Worst cases will end up being for me and not the baby anyway. Say something goes wrong and they have to end up doing a hysterectomy on me or something like that and so I no longer have the option to have any more kids. Which would probably be for the best anyway, I don't think any future kids want to be born from us, we can only provide them with weak muscles and lack the ability to breathe. So are the risks that risky? Probably not. But do I question if it is necessary? 100% I do. I really don't feel like it is necessary to do this procedure. Now we just need to think on how badly we want to go against the doctors recommendations.
Saturday, December 5, 2015
why don't you smile?
My 4 year old asked me today why I don't smile anymore... She has complained about this a few times, I just figured I need to make sure to smile at her more often. She has been a handful lately and needing more structure and discipline lately so I need to make sure to go over board with the smiling to over compensate. Earlier today I was smiling though and she said, "No that isn't how you smile, why don't you smile like you use to?" Then she took the ipad and brought up this picture and said, "See like this! Why don't you have this smile anymore?"
........
........
........
........
........
ouch
ouch
Kids are so insightful. I didn't know that my smile changed, but I remember how I felt in this picture. I know I haven't felt that smile in a long time. I have many things to be happy about, I have many blessings in my life, but I guess when my baby went and when she took part of me, she took part of my smile away with her.
I feel terrible that my 4 year old thinks I don't "smile" anymore, I think she thinks it is her fault. Something she did that made me stop smiling. I don't even know what to tell her so that she would understand? I thought I was doing good at aiming smiles her way but maybe she can see the pain that is still behind the smile. I actually didn't even answer her, the only thing I thought to say is, No I still smile like that, see! I didn't really want to go into how losing Lua makes mommy really sad (and having another baby with the same condition makes mommy equally sad...) I wouldn't want her to think that she isn't good enough to make me smile like that, because she is very much so the reason I smile at all recently. I think I have just lost the innocents that allows one to have a goofy, dorky, uplifting smile. Either way, her question hurt pretty bad, like a knife to the heart.
Yesterday we went to Milwaukee for an MRI of the baby, we didn't get any results yet. I keep a few people that helped us with Lua informed on everything that is going on, and this morning I got a text asking how it went, or if I would rather not say because it is too overwhelming... I didn't even think until that text that we could be getting really terrible news, I thought we would just get the okay of no there is no blockage in the air way, or yes their is. I guess a blockage would be pretty bad news, but I guess they can get a better look at his muscles and give us more information, I'm not sure... but now I am holding my breath for those results.
And my daughter thought my smile was gone before this... hopefully I don't lose whatever I have left.
I feel terrible that my 4 year old thinks I don't "smile" anymore, I think she thinks it is her fault. Something she did that made me stop smiling. I don't even know what to tell her so that she would understand? I thought I was doing good at aiming smiles her way but maybe she can see the pain that is still behind the smile. I actually didn't even answer her, the only thing I thought to say is, No I still smile like that, see! I didn't really want to go into how losing Lua makes mommy really sad (and having another baby with the same condition makes mommy equally sad...) I wouldn't want her to think that she isn't good enough to make me smile like that, because she is very much so the reason I smile at all recently. I think I have just lost the innocents that allows one to have a goofy, dorky, uplifting smile. Either way, her question hurt pretty bad, like a knife to the heart.
Yesterday we went to Milwaukee for an MRI of the baby, we didn't get any results yet. I keep a few people that helped us with Lua informed on everything that is going on, and this morning I got a text asking how it went, or if I would rather not say because it is too overwhelming... I didn't even think until that text that we could be getting really terrible news, I thought we would just get the okay of no there is no blockage in the air way, or yes their is. I guess a blockage would be pretty bad news, but I guess they can get a better look at his muscles and give us more information, I'm not sure... but now I am holding my breath for those results.
And my daughter thought my smile was gone before this... hopefully I don't lose whatever I have left.
I just have to keep telling myself the reasons I am still blessed no matter what, life is what it is. In a jokey kind of way, I think, well 10% of babies go to the NICU or have issues, I'm glad I can be apart of that 10% to knock someone else off the board. Hopefully this means all the upcoming babies in our family will have no issues because we took the brunt of it all!
These are just a few of my blessings...
1. This little girl.
2. This awesome father and husband
3. Christmas cookies! (in no particular order)
4. This devil
5. This amazing, adorable, sweet little boy
6. For every day I got to spend with this precious angel
Thursday, December 3, 2015
December
The other morning I had a dream that I picked up our baby boy and he was able to have some head control and he could move his head around and look one way than the other. I was freaking out in the dream! We were all so very excited by this!
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.
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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