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.
Monday, December 14, 2015
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?"
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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!
Monday, November 30, 2015
a riddle wrapped in a mystery
Today is a little blue feeling kind of day. Probably most of my posts are depressing though, I feel that it is important to share, because these must be the feelings of anyone who goes through any type of grief. The roller coaster ride. The never ending, roller coaster ride.
I am getting very anxious for the birth of our son. I know it will be nothing like I have already experienced, although he will be similar to Lua, hopefully we will be in a controlled environment and it won't be so traumatic for him as it was for Lua. I'm still very nervous of what the outcome will be, will we hear that cry that every parent longs to hear when their child is born? Or will it be silent in that room when he is born?
When Lua was born and we had a thousand and more questions going through our brains, I have one memory from that time that keeps popping up constantly lately. It was the time that I felt the most scared and yet hopeful at the same time. That was when we just arrived to milwaukee childrens hospital. Hah, me and my husband are so cute, we talked the whole drive on how we will probably be in the NICU a month and how will we ever manage that month, but hopefully we could condense it down to just a couple weeks instead (3 months later....). Anyway, we were sitting in the waiting room right out side the NICU, Lua hadn't arrived yet and once she was there all the specialist would come in to see her and analyze her first before they brought us in. So we sat in that very blue waiting room. Ugh, that waiting room is so very blue. I was so nervous, it was taking forever, I couldn't imagine what was going on that was taking them so long to come get us, I didn't like not being able to just go to her, she was my baby after all and they were keeping us apart so they could 'analyze her' away from us. Bothered me so much. But my husband was on his phone, after we had a name for her contractures, arthrogryposis, he was online finding a support group and posting questions. He had just gotten a response from someone on the question he asked. I remember he told me to read it, as we sat there in that very blue, uncomfortable, waiting room. Everyone on the AMC support group website were very uplifting and supportive. A few others had responded about how their babies were born with very little movement too but once they got bigger and the contractures were not as tight, the kiddos started moving more.
I write this now and it all makes sense... but when I was in that room waiting for Lua reading these things I couldn't understand any of it! I was so overwhelmed, I couldn't understand the simplest of words, I couldn't understand what anyone was saying. I had no clue what was going on. I think that is why this memory keeps showing up, the overwhelming amount of uncertainty that I had with Lua and what would happen, I think it is the same now. I have an overwhelming amount of uncertainty of what will happen with our baby. And I still cannot understand why it happened again, so easily.
I also think that memory, I can see me sitting in that waiting room as clear as day right now! but that memory was the calm before the storm. We left Neenah childrens hospital believing we went to Milwaukee to help her and her contractures. Once the contractures were corrected she would be fine and start moving. We had no clue that the contractures were just a symptom of something much worse. I didn't know muscle weakness was the cause of her joints stuck into position. When we were finally able to go in and see our baby, we were surrounded by doctors. All I wanted to do was hold my baby, but they all wanted to talk.
"Three things have to happen for you to take her home...." one doctor said and he listed what those were.
"Your baby is suffering from a disease that will only make her worse...." the geneticist said.
"Look how weak she is...."
I shut down so fast, I wanted to cry so badly, their words were so not what I was expecting. I stayed quiet and wished they would all shut up. But not my husband, he asked question after question, I wanted to hit him so badly! They didn't care! Didn't you hear them? They are telling us our baby is going to die, they don't care what you ask them.... I was really bitter, but I'm glad he was able to ask question after question.
He asked them... "But she is improving every day."
"No she is only improving from the birth trauma, she will never recover from her disease."
"We have a guess as to what it is, I will have someone come in and give you paper work on them"
I didn't even know she had a disease! No one told us this before this moment right now!
I left the room almost bursting in tears, we had to go check in at the ronald house, but before we left our nurse then asked me, have you held her yet? I could only shake my head no. She tells me, well we will make that happen when you come back... and then I lost it and started sobbing as we walked to our car. Thiago asked me why I was so upset. Really?! He didn't even catch that they were telling us she was going to die! I can't even know what he remembers from this moment, or what he understood from what the doctors said, or what he was thinking... all I could do was die inside.
I so very badly do not want to have another memory like this. I don't want to see doctor after doctor tell us this crap. Things are different now that they believe they know the cause, they know nothing of this disease so they cannot tell us anything of what to expect, which they found out they couldn't tell us about Lua either. She was suppose to NEVER be off the vent. They thought she was brain dead, they never thought she would move a single body part. They eventually just said, well we don't know. Yeah they didn't and they still don't. It is insanely hard to have a child with a disease that people know nothing about. I feel like they don't want to help, and I don't know where or how we will get help for our little boy if there is no one out there that has any idea on his condition.
Anyway, feeling like I got off track. Main point, I'm becoming very nervous and anxious and scared. I'm feeling like the time is getting closer and closer and while I am really anxious to know how strong he will be, what he will look like, who he will be, I am terrified that him being out in the world will slowly start to take him away from us.
I love this line from the book Call the midwife... I could read this over and over, I still don't understand it yet understand it at the same time.
I am getting very anxious for the birth of our son. I know it will be nothing like I have already experienced, although he will be similar to Lua, hopefully we will be in a controlled environment and it won't be so traumatic for him as it was for Lua. I'm still very nervous of what the outcome will be, will we hear that cry that every parent longs to hear when their child is born? Or will it be silent in that room when he is born?
When Lua was born and we had a thousand and more questions going through our brains, I have one memory from that time that keeps popping up constantly lately. It was the time that I felt the most scared and yet hopeful at the same time. That was when we just arrived to milwaukee childrens hospital. Hah, me and my husband are so cute, we talked the whole drive on how we will probably be in the NICU a month and how will we ever manage that month, but hopefully we could condense it down to just a couple weeks instead (3 months later....). Anyway, we were sitting in the waiting room right out side the NICU, Lua hadn't arrived yet and once she was there all the specialist would come in to see her and analyze her first before they brought us in. So we sat in that very blue waiting room. Ugh, that waiting room is so very blue. I was so nervous, it was taking forever, I couldn't imagine what was going on that was taking them so long to come get us, I didn't like not being able to just go to her, she was my baby after all and they were keeping us apart so they could 'analyze her' away from us. Bothered me so much. But my husband was on his phone, after we had a name for her contractures, arthrogryposis, he was online finding a support group and posting questions. He had just gotten a response from someone on the question he asked. I remember he told me to read it, as we sat there in that very blue, uncomfortable, waiting room. Everyone on the AMC support group website were very uplifting and supportive. A few others had responded about how their babies were born with very little movement too but once they got bigger and the contractures were not as tight, the kiddos started moving more.
I write this now and it all makes sense... but when I was in that room waiting for Lua reading these things I couldn't understand any of it! I was so overwhelmed, I couldn't understand the simplest of words, I couldn't understand what anyone was saying. I had no clue what was going on. I think that is why this memory keeps showing up, the overwhelming amount of uncertainty that I had with Lua and what would happen, I think it is the same now. I have an overwhelming amount of uncertainty of what will happen with our baby. And I still cannot understand why it happened again, so easily.
I also think that memory, I can see me sitting in that waiting room as clear as day right now! but that memory was the calm before the storm. We left Neenah childrens hospital believing we went to Milwaukee to help her and her contractures. Once the contractures were corrected she would be fine and start moving. We had no clue that the contractures were just a symptom of something much worse. I didn't know muscle weakness was the cause of her joints stuck into position. When we were finally able to go in and see our baby, we were surrounded by doctors. All I wanted to do was hold my baby, but they all wanted to talk.
"Three things have to happen for you to take her home...." one doctor said and he listed what those were.
"Your baby is suffering from a disease that will only make her worse...." the geneticist said.
"Look how weak she is...."
I shut down so fast, I wanted to cry so badly, their words were so not what I was expecting. I stayed quiet and wished they would all shut up. But not my husband, he asked question after question, I wanted to hit him so badly! They didn't care! Didn't you hear them? They are telling us our baby is going to die, they don't care what you ask them.... I was really bitter, but I'm glad he was able to ask question after question.
He asked them... "But she is improving every day."
"No she is only improving from the birth trauma, she will never recover from her disease."
"We have a guess as to what it is, I will have someone come in and give you paper work on them"
I didn't even know she had a disease! No one told us this before this moment right now!
I left the room almost bursting in tears, we had to go check in at the ronald house, but before we left our nurse then asked me, have you held her yet? I could only shake my head no. She tells me, well we will make that happen when you come back... and then I lost it and started sobbing as we walked to our car. Thiago asked me why I was so upset. Really?! He didn't even catch that they were telling us she was going to die! I can't even know what he remembers from this moment, or what he understood from what the doctors said, or what he was thinking... all I could do was die inside.
I so very badly do not want to have another memory like this. I don't want to see doctor after doctor tell us this crap. Things are different now that they believe they know the cause, they know nothing of this disease so they cannot tell us anything of what to expect, which they found out they couldn't tell us about Lua either. She was suppose to NEVER be off the vent. They thought she was brain dead, they never thought she would move a single body part. They eventually just said, well we don't know. Yeah they didn't and they still don't. It is insanely hard to have a child with a disease that people know nothing about. I feel like they don't want to help, and I don't know where or how we will get help for our little boy if there is no one out there that has any idea on his condition.
Anyway, feeling like I got off track. Main point, I'm becoming very nervous and anxious and scared. I'm feeling like the time is getting closer and closer and while I am really anxious to know how strong he will be, what he will look like, who he will be, I am terrified that him being out in the world will slowly start to take him away from us.
I love this line from the book Call the midwife... I could read this over and over, I still don't understand it yet understand it at the same time.
Sunday, November 29, 2015
Strength & Stability
I am really not looking forward to this upcoming week... this week I will have a doctor appointment every day except for monday. I started doing some aquatic physical therapy, I had to cancel my second one last week though, and I am starting to think I need to cancel this weeks too. It is just so many days of going to the hospital and I'm not really a big fan :-/
I switched to my new OB last week, who I will see again this week. We learned very little from that appointment. He actually started off by saying to me, "Well, you have a very complicated background...." why thank you........................ -_-
He has delivered a ton of babies and said he hasn't once had a case like ours, but promises it will be uneventful. His part maybe. We are still debating on how we want to get little Mr. out of there. Do we go c-section or not? Do they take baby earlier than 39 weeks? And if the heart still stays in issue do we just go to Madison. The ob asked, what does your specialist dr. recommend? My specialist dr. recommends whatever my ob thinks we should do, but my ob disagrees, no no, we need to know the specialist opinion. Back and forth back and forth, I feel like a ping pong ball most of the time here! I think my specialist dr. leans a little more towards doing a natural birth, while my ob leans more towards doing a csection. I'm thinking more of a natural birth if possible, I'm just worried if it is possible for baby to get stuck and then we run into big problems or something. I am hoping that the baby will make the decision for us though. If labor starts naturally and things progress than great! But he will Not stay head down! Every other appointment he is head up, head down, head up, head down, maybe if he stays head up then we will have our answer as to what we are going to do. But this week we have an ob appointment, an appointment with my specialist, and an MRI appointment, Between them all I would hope we would hope we get a better idea of what we will do. It is a little hilarious, few days ago my mom and I ran into one of my sisters old friends and she asked when I was due, "Oh you have a lot of time yet!" Huh????? 6 weeks is a long time for you? Oh that's right you aren't the one getting monitored every single week. Besides Lua came at 38 weeks, so there is potentially less time than 6 weeks left.
I'm thinking I need to make a shirt that I can wear every where that says, If you can't say anything constructive, keep your mouth shut. I don't want your opinion. (maybe that part could go on the back?)
Holidays, oh holidays... I think we overcompensated for our troubles this year during black friday or maybe I should say thursday? Really is there anything better than retail therapy though? Especially when you are being tricked into thinking you are getting things for a way better price than normal.. I mean this works every time on me! But, I found a gold mine this black friday that I am in love with!
http://mylokai.com/shop/lokai-bracelet-clear.html
I saw these at one of our local stores during the summer, I thought they looked cool but I didn't really read into them or anything, just walked by it. But I have been seeing someone on pinterest talk about these a lot and how they have more meaning behind them, yadda yadda, so I have been meaning to go back to that store and look at them but I just have not had time yet. So while black friday shopping I found some! They arent the authentic kind though but the meaning is still the same, the ones I found were actually the link below, but some day I plan on getting one of the lokai ones.
http://www.balanceyourlifebracelet.com/shop/
If you haven't seen them before, they are pretty cool and I found them to be so very fitting for me! I use to be really into wearing those rubber bracelets as a teenager, and that had no meaning at all, so when I read about them I knew I had to get one!
I switched to my new OB last week, who I will see again this week. We learned very little from that appointment. He actually started off by saying to me, "Well, you have a very complicated background...." why thank you........................ -_-
He has delivered a ton of babies and said he hasn't once had a case like ours, but promises it will be uneventful. His part maybe. We are still debating on how we want to get little Mr. out of there. Do we go c-section or not? Do they take baby earlier than 39 weeks? And if the heart still stays in issue do we just go to Madison. The ob asked, what does your specialist dr. recommend? My specialist dr. recommends whatever my ob thinks we should do, but my ob disagrees, no no, we need to know the specialist opinion. Back and forth back and forth, I feel like a ping pong ball most of the time here! I think my specialist dr. leans a little more towards doing a natural birth, while my ob leans more towards doing a csection. I'm thinking more of a natural birth if possible, I'm just worried if it is possible for baby to get stuck and then we run into big problems or something. I am hoping that the baby will make the decision for us though. If labor starts naturally and things progress than great! But he will Not stay head down! Every other appointment he is head up, head down, head up, head down, maybe if he stays head up then we will have our answer as to what we are going to do. But this week we have an ob appointment, an appointment with my specialist, and an MRI appointment, Between them all I would hope we would hope we get a better idea of what we will do. It is a little hilarious, few days ago my mom and I ran into one of my sisters old friends and she asked when I was due, "Oh you have a lot of time yet!" Huh????? 6 weeks is a long time for you? Oh that's right you aren't the one getting monitored every single week. Besides Lua came at 38 weeks, so there is potentially less time than 6 weeks left.
I'm thinking I need to make a shirt that I can wear every where that says, If you can't say anything constructive, keep your mouth shut. I don't want your opinion. (maybe that part could go on the back?)
Holidays, oh holidays... I think we overcompensated for our troubles this year during black friday or maybe I should say thursday? Really is there anything better than retail therapy though? Especially when you are being tricked into thinking you are getting things for a way better price than normal.. I mean this works every time on me! But, I found a gold mine this black friday that I am in love with!
http://mylokai.com/shop/lokai-bracelet-clear.html
I saw these at one of our local stores during the summer, I thought they looked cool but I didn't really read into them or anything, just walked by it. But I have been seeing someone on pinterest talk about these a lot and how they have more meaning behind them, yadda yadda, so I have been meaning to go back to that store and look at them but I just have not had time yet. So while black friday shopping I found some! They arent the authentic kind though but the meaning is still the same, the ones I found were actually the link below, but some day I plan on getting one of the lokai ones.
http://www.balanceyourlifebracelet.com/shop/
If you haven't seen them before, they are pretty cool and I found them to be so very fitting for me! I use to be really into wearing those rubber bracelets as a teenager, and that had no meaning at all, so when I read about them I knew I had to get one!
This is the one I got. I found that it was very fitting for me because it is something I lack. A reminder of strength and stability. I have caught myself glancing down at the bracelet and it continues to remind me of something more. All we have been through, even though all I have felt is weak, there has to be strength in there somewhere or else I wouldn't be at the spot that I am. I really hate when people tell me that I am strong. You don't know, and just because on the outside I seem like I have it all together, I very much so don't. But, it is okay if I tell myself to be strong, and along with this to have stability, I don't think you can get very far if you aren't stable in the current situation you are in. So if you haven't gathered, I love these! I find it so funny how such a little thing can make you feel so many different emotions and feelings. I love it!
My husband came around while I was looking at these and I convinced him to get one too!
My husband came around while I was looking at these and I convinced him to get one too!
I love his as well! It is so so fitting for him too! But I believe this is a hit or miss kind of thing, you either really get it and love it or it is like, eh. load of crap.... which I think is totally fine. Whatever works for you, and after so long being down in the ground, any little thing that helps truly feels amazing! I can see myself wearing this bracelet while we are hoping to bring this little baby into the world and hoping this gives a reminder to what the goal is. No matter what the outcome will be, we need to stay grounded, strong and stable, using our inner energy, and get through the next step of life. Corny, but it will do for now!
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