Sol arrived safely to Madison hospital, we followed the ambulance the way there. I could have had a ride in the ambulance but I would have had to sit in the front and wouldn't really be able to see sol or anything so I decided to go with the family so it wouldn't be so lonely. I was really scared something would happen anyway and just didn't think I could handle it. But nothing happened, he did great.
We did arrive later in the day in Madison so many of the specialist didn't come to really look at him, just the few normal doctors, neonatologist, respiratory therapist, nurses, that was about it, and they started running a few tests but not many. Today was his big day of meeting specialist after specialist after specialist..... Poor baby... It is so hard to watch so many people pick and poke at him all day long. He is such a trooper for doing as well as he did. He hasn't had any morphine either since Neenah, some Tylenol to get through all the moving and people picking on him, but he has done well.
After everyone was done messing with him, he had ultrasounds done on his head, an echo done, ultrasound on the rest of his body, xrays, physical therapist looked at him, Ortho looked at him, neuromuscular Dr wasted our time looking at him just so she could tell us there is nothing she can do, and genetics! We saw social worker, lactation consultant, and a dietitian because I'm refusing fortifying his breastmilk... They started early with that this time so I wasn't very prepared. After allllll of that, we finally were able to hold him!!!! What a trooper! He was such a nice little bundle and fits so well in your arms. He is such a snuggle bug, I can't wait to snuggle him at home! Both me and daddy got to hold him and he did very well.. And may cried the whole time because it isn't fair that we get to hold him and she can't.... Uuhh kids... I wish I could put pictures up of us holding him but my phone wont let me, ill have to add them later.
So it has been an exhausting day for all of us! Going through all his issues... They said he has fused ribs, they said the same about lua but in the end she didn't, I'm not going to take them too seriously on that. But his brain ultrasound looked good, nothing abnormal. His heart looked good, fluid on his lungs, which we know about, he is still working on clearing that out. His broken arm is healing very nicely. And I had an interesting talk with genetics. He agrees with me that our kiddos dont fit limb girdle muscular dystrophy, they are of course much more severe. I was able to answer a lot of his questions to give him a good direction on where to go from here for diagnosing. He actually told me he was surprised, I gave him so much more information than he usually can get from parents. I guess I have been studying this for a long enough time now.
His thoughts, which I agree on, is that the condition would probably be more of the plectin myopathy. He said looking at sol, and be the same for lua, they had little muscle over all develop. They have muscle but little amount. A myopathy is when the fibers of the muscle didn't form together correctly like they should. So although they are severe, they, well Sol, shouldn't be losing muscle, he will just have to do therapy to develop the muscle he has to its max potential, whatever that may be. And we have learned that colds and sicknesses are very hard for these kids so we will always struggle with that. His heart and lungs will be watched carefully and his lungs will mostly be effected with all of this. But! We will be meeting with the best pulmonary doctor in the state for sure, maybe even the best in the country! And she will guide us and help us decide what will be best for Sol. I seriously can't wait to meet her, we had the worst pulmonary Dr. For lua so I'm hoping this is the game changer, the reason I wanted Madison was for this doctor, and we will be getting to meet her soon!
although this really isn't great news on the diagnosis, I'm glad his muscles wont be wasting away, and the geneticist said he expects Sol to gain more movement with the therapies, like Lua did. His feet are in good shape, not clubbed like they originally thought, but I missed the physical therapist so I didn't hear what they had to say about him. Anyway I am anxious to see what this little boy will be able to accomplish. He amazes me every day.
Wednesday, December 30, 2015
Tuesday, December 29, 2015
moving day
I really haven't been in the mood to make many updates, I haven't had time, or a chance to get to my laptop which I prefer because it really sucks typing on my phone! Also not very much has been going on.
I was discharged from the hospital Dec 26th, 2 days after having Sol. We had our Christmas in the hospital room and then we were able to give Sol his presents too! Anyway, I'm very uncomfortable in hospital beds so since everything was going well with me I decided to go ahead and go home. We are close enough to Neenah to get to the NICU, and we knew we would be transferring to Madison soon, so I wanted to go home and pack and clean up before we leave and not know when we will return.
So that's what we did. I was not prepared for the pain you have after a csection though... I keep trying to act like it was just a vaginal birth and I can get up and go as I please, but really has not been working out.
Sol had been doing fine. He is intubated, on and off small amounts of oxygen, lower vent settings, but some of his lung did collapse. Probably because after his arm was broken from them trying to put in a pic line (or IV), he needed to be put on his other side to help the discomfort of his arm. Poor baby was so sore whenever you would touch his arm, I knew something wasn't right. They tried to tell us it was from birth but we saw xrays that were taken a few hours before the pic line was attempted and there was no break.. After they attempted, break, so seems pretty obvious it happened at that time. The neo. Came to me yesterday and said he has fragile bones.. I did correct her and say, since everyone is comparing him to lua, she did not have fragile bones so with out a test being done I wouldn't be so sure that is true. She said that is the only explanation because the nurses put in the lines all the time and they have never broken a babies arm, even in 26 week old babies..... Later she came back to say they were going to test his bone density and should have results today. I haven't heard results yet... But with how badly they want to disprove they caused it, makes me want to look into pressing charges or something, they have become very admit that there is no way this is their fault..... Which this has been a very big set back for us because he was then put on morphine for the pain and now that he had it once, that is a go to thing for him whenever he is in discomfort instead of Tylenol which I have requested over the morphine numerous times. Just a mess... I did spend the day with him yesterday, and he certainly can get in a lot of discomfort. He is disliking his breathing tube, pushing on it with his tongue and creating a ton of secretions in his mouth, which makes him uncomfortable which makes him cry, which makes more secretions... And it goes on! Uuhhhh nothing breaks my heart more than not being able to comfort him. He demanded, I'm serious... Demanded.... Qtip with breastmilk on it... If I took it away he would cup his little tongue and just crrrryyy!!! We had about 3 hours straight of fussing. So I did see why the nurses jumped to morphine, but his crying is good in my opinion.. Just annoying.
today we should be heading to Madison..we have been warned over and over that if his breathing tube comes out during the trip they can not guarantee that he will survive the ride. I personally think he has become easier to intubate so he may surprise them... But I'm insanely worried about the drive for him. I'm hoping they may allow me to go with him incase something were to happen... We will see.
I was discharged from the hospital Dec 26th, 2 days after having Sol. We had our Christmas in the hospital room and then we were able to give Sol his presents too! Anyway, I'm very uncomfortable in hospital beds so since everything was going well with me I decided to go ahead and go home. We are close enough to Neenah to get to the NICU, and we knew we would be transferring to Madison soon, so I wanted to go home and pack and clean up before we leave and not know when we will return.
So that's what we did. I was not prepared for the pain you have after a csection though... I keep trying to act like it was just a vaginal birth and I can get up and go as I please, but really has not been working out.
Sol had been doing fine. He is intubated, on and off small amounts of oxygen, lower vent settings, but some of his lung did collapse. Probably because after his arm was broken from them trying to put in a pic line (or IV), he needed to be put on his other side to help the discomfort of his arm. Poor baby was so sore whenever you would touch his arm, I knew something wasn't right. They tried to tell us it was from birth but we saw xrays that were taken a few hours before the pic line was attempted and there was no break.. After they attempted, break, so seems pretty obvious it happened at that time. The neo. Came to me yesterday and said he has fragile bones.. I did correct her and say, since everyone is comparing him to lua, she did not have fragile bones so with out a test being done I wouldn't be so sure that is true. She said that is the only explanation because the nurses put in the lines all the time and they have never broken a babies arm, even in 26 week old babies..... Later she came back to say they were going to test his bone density and should have results today. I haven't heard results yet... But with how badly they want to disprove they caused it, makes me want to look into pressing charges or something, they have become very admit that there is no way this is their fault..... Which this has been a very big set back for us because he was then put on morphine for the pain and now that he had it once, that is a go to thing for him whenever he is in discomfort instead of Tylenol which I have requested over the morphine numerous times. Just a mess... I did spend the day with him yesterday, and he certainly can get in a lot of discomfort. He is disliking his breathing tube, pushing on it with his tongue and creating a ton of secretions in his mouth, which makes him uncomfortable which makes him cry, which makes more secretions... And it goes on! Uuhhhh nothing breaks my heart more than not being able to comfort him. He demanded, I'm serious... Demanded.... Qtip with breastmilk on it... If I took it away he would cup his little tongue and just crrrryyy!!! We had about 3 hours straight of fussing. So I did see why the nurses jumped to morphine, but his crying is good in my opinion.. Just annoying.
today we should be heading to Madison..we have been warned over and over that if his breathing tube comes out during the trip they can not guarantee that he will survive the ride. I personally think he has become easier to intubate so he may surprise them... But I'm insanely worried about the drive for him. I'm hoping they may allow me to go with him incase something were to happen... We will see.
Sunday, December 27, 2015
Christmas Eve Baby
Well, Mr. Sol decided that he wanted to open his gifts for christmas, his gifts that were not even that impressive! So... he ended up being born on Christmas eve morning.
At 2:30 that morning, I woke up feeling the need to use the bathroom and when I got there I realized my water had broke, or I seriously peed myself, maybe my bladder exploded? after I stood up, though, more water kept breaking, so I knew this was it. I woke up my husband and told him my water had broken but he wasn't so sure it was actually my water.... men.....
I was so so so nervous, because with the girls, when my water broke they came out VERY quickly after that! I was so scared we were not going to make it to the hospital in time, but I wasn't having many contractions. We headed right for Neenah and made it in time. Started to have some contractions but not too bad or strong or frequent. They started setting up for my csection. I arrived there about 3am and they started to prep me for csection at 6:30 am. My parents had arrived around 5am to help us with May.
They took me back and did all that fun stuff they do to prep for csection... yikes... and after they got the spinal in, I started throwing up, uuuhh... but I felt so much better after that. I was so extremely nervous there was no way I could hold back, but after I threw up I was good for the rest of the csection. Wow is a csection different than a vaginal birth... I know I am too weak to ever do that again! I do remember looking up at my husband and telling him.... for Christmas, I bought you the walking dead comic books......... I just wanted him to know in case of anything.
Soon they said, it wont be long now, and I heard the doctor say, "Happy Birthday baby boy!" and the most wonderful sound, baby cries!!! He cried and cried and cried, it was softer but it was cry after cry! And he was stable! I thought maybe.. maybe he wouldnt need to be intubated. But it wasn't long and he was needing the support. He tolerated everything so well. He didn't have much trauma at all except the normal being pulled out of the belly trauma. They tried to intubate and it failed, they tried a few more times and it was not successful. We had this awesome anesthesiologist, who was so good to me and kept encouraging me when he could see I was really scared. Anyway he jumped in there with a special scope so he could see where the tube needed to go and success! He got it in! Everyone was celebrating! Then the neonatologsit thought the tube was in too deep and pulled and it came out again............... but we got the same guy back in there and the second time it took him a lot longer to get it in but it came in! I was taken out shortly after that so I could start my process of puking for the next 7 hours. But hubby stayed with baby as they got him all settled in. He is so identical to Lua. He didn't suffer as much as she did so he became stable pretty quickly and he has been pretty comfortable. It took me until later that evening before I was well enough to be able to go see him and then I couldn't stay very long before getting sick again.
But he had been doing good, no complaints and for the most part he was being left alone. Until yesterday morning. They were trying to get this line they needed for extra nutrition, not 100% needed. And they ended up breaking his arm. Now he needs morphine, which he doesn't need to be getting! And I feel like this is just a huge set back. I am so worried for him, and how they will handle him from here on out. I really don't want any more set backs, I am just terrified. He is starting out somewhat stronger than Lua, and maybe if we can stay on this path we can have a different outcome. I don't want to lose my baby...it is just difficult.
The up side is he is getting to full feeds pretty quickly here! So hopefully we can fatten him up some and this breastmilk will really help him out!
Anyway this is written very poorly, I am still in a bit of pain, and have too many thoughts going on right now and worries, so hopefully I can make better updates later on. But for now, here is our baby!
At 2:30 that morning, I woke up feeling the need to use the bathroom and when I got there I realized my water had broke, or I seriously peed myself, maybe my bladder exploded? after I stood up, though, more water kept breaking, so I knew this was it. I woke up my husband and told him my water had broken but he wasn't so sure it was actually my water.... men.....
I was so so so nervous, because with the girls, when my water broke they came out VERY quickly after that! I was so scared we were not going to make it to the hospital in time, but I wasn't having many contractions. We headed right for Neenah and made it in time. Started to have some contractions but not too bad or strong or frequent. They started setting up for my csection. I arrived there about 3am and they started to prep me for csection at 6:30 am. My parents had arrived around 5am to help us with May.
They took me back and did all that fun stuff they do to prep for csection... yikes... and after they got the spinal in, I started throwing up, uuuhh... but I felt so much better after that. I was so extremely nervous there was no way I could hold back, but after I threw up I was good for the rest of the csection. Wow is a csection different than a vaginal birth... I know I am too weak to ever do that again! I do remember looking up at my husband and telling him.... for Christmas, I bought you the walking dead comic books......... I just wanted him to know in case of anything.
Soon they said, it wont be long now, and I heard the doctor say, "Happy Birthday baby boy!" and the most wonderful sound, baby cries!!! He cried and cried and cried, it was softer but it was cry after cry! And he was stable! I thought maybe.. maybe he wouldnt need to be intubated. But it wasn't long and he was needing the support. He tolerated everything so well. He didn't have much trauma at all except the normal being pulled out of the belly trauma. They tried to intubate and it failed, they tried a few more times and it was not successful. We had this awesome anesthesiologist, who was so good to me and kept encouraging me when he could see I was really scared. Anyway he jumped in there with a special scope so he could see where the tube needed to go and success! He got it in! Everyone was celebrating! Then the neonatologsit thought the tube was in too deep and pulled and it came out again............... but we got the same guy back in there and the second time it took him a lot longer to get it in but it came in! I was taken out shortly after that so I could start my process of puking for the next 7 hours. But hubby stayed with baby as they got him all settled in. He is so identical to Lua. He didn't suffer as much as she did so he became stable pretty quickly and he has been pretty comfortable. It took me until later that evening before I was well enough to be able to go see him and then I couldn't stay very long before getting sick again.
But he had been doing good, no complaints and for the most part he was being left alone. Until yesterday morning. They were trying to get this line they needed for extra nutrition, not 100% needed. And they ended up breaking his arm. Now he needs morphine, which he doesn't need to be getting! And I feel like this is just a huge set back. I am so worried for him, and how they will handle him from here on out. I really don't want any more set backs, I am just terrified. He is starting out somewhat stronger than Lua, and maybe if we can stay on this path we can have a different outcome. I don't want to lose my baby...it is just difficult.
The up side is he is getting to full feeds pretty quickly here! So hopefully we can fatten him up some and this breastmilk will really help him out!
Anyway this is written very poorly, I am still in a bit of pain, and have too many thoughts going on right now and worries, so hopefully I can make better updates later on. But for now, here is our baby!
Wednesday, December 23, 2015
year in review
We have made a decision on what we will do. We decided to stay with our more local hospital that has the childrens hospital attached to it and do the csection on December 28th. I don't know if this is the best decision, the right decision, if we will regret this decision or what.. but it is the decision I feel the most comfortable with, so we will stick with it and go with it. We will meet with the doctors of the NICU tomorrow and go through everything. I'm hoping they don't change their mind and tell us that we can't go there in the end, because that will become a very awkward conversation with the Madison hospital after I called and cancelled everything this morning.
So I am on pins and needles right now. In just a few days we will know, finally have answers, and see what our future will become. I had been so excited for Christmas but now with the csection date moved to december 28th, I am just terrified, once Christmas is over this little baby will be coming out. It could or will be a very bitter sweet situation. If he comes out doing pretty good or breathing on his own or maybe just being able to eat on his own, or maybe even moving more than Lua did, we could be in a very good situation. If he comes out and they can't intubate and the worst happens, then it will be a very sad and difficult day and right after Christmas to top it off. In that case I would have wished I could have kept him inside for as long as possible. I do not know what to expect, at all! When I was pregnant with Lua and going into labor I assumed it would be so much like how it was with May, and it was sooo different. First I was induced with May, but I got to end up holding her and having this amazing healthy baby. Lua was a much different case. I am thinking I can just assume that this time this baby's birth will be very similar to Lua's but it will be different already because I am having a csection, which I am terrified for! Anyway, that alone will make the delivery much different, so I really have no clue what to expect to happen with this baby. One moment at a time for the next few days.
I can't really believe it is almost the end of the year already... almost doesn't seem possible! As I go through my pictures and see all the things that happened this year, it could almost be 2 years into one. We were mostly still trying to recover from losing Lua, and it seems like our lives went crazy.
In January my dog was put down after he had gotten pretty sick, probably lymes disease. That was hard, but since it was only a few months after losing Lua, there was nothing that could be as painful as that.. but I do miss him.. He was the last dog we got while living at my parents house, so I remember him the most of all our pets. Best thing about that dog, is while I considered him my dog, he was still mostly my parents responsibility. Now having our own dog as grown ups, it really sucks, you realize how much work these stinkin' dogs are!
May ended up staying over night at the hospital when she got a touch of pneumonia... scariest moment in my life, just a few months after Lua passed away, May gets sick and her oxygen level was terrible. That was a really rough night!
We went to Alton Brown's show (?) not even sure what to call that.. but that was a lot of fun! A great valentines gift!
We celebrated Lua's 1st birthday. What a day that was... It could have been so hard, but with all the wonderful friends and family that came to help us celebrate it and remember her on her day, made the day so much better than I ever expected. Obviously it could have only been better if she would have been here with us. I was just remembering last night how we got the balloons to release the day before the celebration and when I woke up the next morning they were all flat! We had to try to get more done in time and the store didn't have the colors we wanted, they only had white and blue which I was afraid wouldn't show up in pictures against the blue and white sky! It started to become a mini disaster but they did end up giving us the balloons for free and the pictures turned out wonderful. Oh and the cupcakes that were brought! We sure are spoiled by our friends and family!
I also received a wonderful gift from a truly great friend, a remembrance blanket made from Lua's things. Such a precious gift to have! Again, we are pretty spoiled!
Our guinea pig passed away this year.... very bitter sweet thing. He was mine and my husbands first pet, we had him for 5 years! Speaking of which, we celebrated our 5 years of marriage this year! But it was sad to see him go, I am glad I don't have to clean up his poop anymore though...
We had a tattoo party!
We went to DISNEY! May's favorite thing ever! What an amazing trip that was!
And found out that I was pregnant while we were there! It is ironic how that happened. After losing Lua I knew I really wanted another child, not just for me, but for May to have a sibling that she deserves. I went a few months really not trying to prevent it from happening, but then the month I decided it would be really good to wait awhile yet, is the month we find out I'm pregnant. Before getting pregnant I was struggling a lot with my blood pressure, for no reason it seemed it would be pretty high. I was doing Yoga and took salt out of my diet and changed my diet to try to help. I started advocare, but nothing was working. I was really stressed from losing Lua. It really took a toll on me. I couldn't sleep at night. I was constantly frustrated and anxious. My first appointment to confirm pregnancy, my blood pressure was already looking better. With this entire pregnancy I haven't had high blood pressure once, which I assumed we could expect it to go through the roof with all the stress we have been having. This little guy has truly blessed me in the end. Even with all this stress, in a way he took off some of the pain I had from losing Lua. He has given me some hope, and I keep hoping that he will continue to do this for us. We will see. I am thankful for this, even if it has come with a lot of pain. In the end though, I only want what is best for him.
We Moved to a new city and a New house!
We had an amazing 4th birthday celebration for May! It truly could not have been a better day, and I feel bad that she won't have a birthday celebration next year because there is no way anything could be better than last years!
May started school and she did gymnastics. So fun watching all the new things she has learned and can do now.
My uncle passed away this year, and a cousin. I know many other people have lost loved ones this year too.
We all have made some new friends this year, and you cannot put a price on that, that is for sure.
So it seems like it is only fair that we end this year with a bang and hope that it is a bang in a good way!
Come on baby boy.. everyone is cheering for you!
Thanks for the insane year everyone.
So I am on pins and needles right now. In just a few days we will know, finally have answers, and see what our future will become. I had been so excited for Christmas but now with the csection date moved to december 28th, I am just terrified, once Christmas is over this little baby will be coming out. It could or will be a very bitter sweet situation. If he comes out doing pretty good or breathing on his own or maybe just being able to eat on his own, or maybe even moving more than Lua did, we could be in a very good situation. If he comes out and they can't intubate and the worst happens, then it will be a very sad and difficult day and right after Christmas to top it off. In that case I would have wished I could have kept him inside for as long as possible. I do not know what to expect, at all! When I was pregnant with Lua and going into labor I assumed it would be so much like how it was with May, and it was sooo different. First I was induced with May, but I got to end up holding her and having this amazing healthy baby. Lua was a much different case. I am thinking I can just assume that this time this baby's birth will be very similar to Lua's but it will be different already because I am having a csection, which I am terrified for! Anyway, that alone will make the delivery much different, so I really have no clue what to expect to happen with this baby. One moment at a time for the next few days.
I can't really believe it is almost the end of the year already... almost doesn't seem possible! As I go through my pictures and see all the things that happened this year, it could almost be 2 years into one. We were mostly still trying to recover from losing Lua, and it seems like our lives went crazy.
In January my dog was put down after he had gotten pretty sick, probably lymes disease. That was hard, but since it was only a few months after losing Lua, there was nothing that could be as painful as that.. but I do miss him.. He was the last dog we got while living at my parents house, so I remember him the most of all our pets. Best thing about that dog, is while I considered him my dog, he was still mostly my parents responsibility. Now having our own dog as grown ups, it really sucks, you realize how much work these stinkin' dogs are!
May ended up staying over night at the hospital when she got a touch of pneumonia... scariest moment in my life, just a few months after Lua passed away, May gets sick and her oxygen level was terrible. That was a really rough night!
We went to Alton Brown's show (?) not even sure what to call that.. but that was a lot of fun! A great valentines gift!
We celebrated Lua's 1st birthday. What a day that was... It could have been so hard, but with all the wonderful friends and family that came to help us celebrate it and remember her on her day, made the day so much better than I ever expected. Obviously it could have only been better if she would have been here with us. I was just remembering last night how we got the balloons to release the day before the celebration and when I woke up the next morning they were all flat! We had to try to get more done in time and the store didn't have the colors we wanted, they only had white and blue which I was afraid wouldn't show up in pictures against the blue and white sky! It started to become a mini disaster but they did end up giving us the balloons for free and the pictures turned out wonderful. Oh and the cupcakes that were brought! We sure are spoiled by our friends and family!
I also received a wonderful gift from a truly great friend, a remembrance blanket made from Lua's things. Such a precious gift to have! Again, we are pretty spoiled!
Our guinea pig passed away this year.... very bitter sweet thing. He was mine and my husbands first pet, we had him for 5 years! Speaking of which, we celebrated our 5 years of marriage this year! But it was sad to see him go, I am glad I don't have to clean up his poop anymore though...
We had a tattoo party!
We went to DISNEY! May's favorite thing ever! What an amazing trip that was!
And found out that I was pregnant while we were there! It is ironic how that happened. After losing Lua I knew I really wanted another child, not just for me, but for May to have a sibling that she deserves. I went a few months really not trying to prevent it from happening, but then the month I decided it would be really good to wait awhile yet, is the month we find out I'm pregnant. Before getting pregnant I was struggling a lot with my blood pressure, for no reason it seemed it would be pretty high. I was doing Yoga and took salt out of my diet and changed my diet to try to help. I started advocare, but nothing was working. I was really stressed from losing Lua. It really took a toll on me. I couldn't sleep at night. I was constantly frustrated and anxious. My first appointment to confirm pregnancy, my blood pressure was already looking better. With this entire pregnancy I haven't had high blood pressure once, which I assumed we could expect it to go through the roof with all the stress we have been having. This little guy has truly blessed me in the end. Even with all this stress, in a way he took off some of the pain I had from losing Lua. He has given me some hope, and I keep hoping that he will continue to do this for us. We will see. I am thankful for this, even if it has come with a lot of pain. In the end though, I only want what is best for him.
We Moved to a new city and a New house!
We had an amazing 4th birthday celebration for May! It truly could not have been a better day, and I feel bad that she won't have a birthday celebration next year because there is no way anything could be better than last years!
May started school and she did gymnastics. So fun watching all the new things she has learned and can do now.
My uncle passed away this year, and a cousin. I know many other people have lost loved ones this year too.
We all have made some new friends this year, and you cannot put a price on that, that is for sure.
So it seems like it is only fair that we end this year with a bang and hope that it is a bang in a good way!
Come on baby boy.. everyone is cheering for you!
Thanks for the insane year everyone.
Monday, December 21, 2015
decisions, decisions, decisions...
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.
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.
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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