I haven't had a chance to write about Pierson just yet, but I will soon enough.
Most days are easier then what I remember 4 years ago. But even after 4 years their are still hard days. Maybe its because I have not lost just 1 baby but in reality I have lost 2 babies. Addison still sits heavy on my heart. Not sure why her more then Pierson. Maybe its because I was able to love her for 28 weeks, I built a future with her. I wanted her so badly, that to this day it hurts, still.. Drs after drs showing no hope, I was the one that held onto that hope. I wanted so badly to prove those drs wrong.
When I lost Pierson at just 14 weeks to the same thing Addison had, I felt almost like a closure for me. I held on to so much guilt and so many questions that never were answered after Addison died. Even though I knew I didn't do anything to Addison to cause her condition, doesn't mean I never felt like I didn't. I always wondered, was it me? Once we found out Pierson had the same condition, my shoulders relaxed and I realized I truly didn't do anything. I wasn't happy to find out that this was in fact genetic but it answered soooo many questions I had.
Today, is a day where I sit back and wonder what life would have been if Addison was here, and also what it would be like if Pierson was here. Its such a weird thing because I have 2 healthy and 2 in heaven but am I a family of 4? Would I have had 4 kids if Addison was born. Would their ever been a Iva or even Pierson? These are the questions that can torment me. I'm so thankfully for my spunky Iva, but without Addison I don't think I would have ever had a Iva. Without a Iva I would have never had a Pierson..
Life can be confusing, and much more confusing when you have 2 babies in heaven. My heart hurts today, even after 4 years without Addison and 7 months after Pierson.
About Me
- Heather
- Hi my name is Heather. I have been married to my best friend since 11/03/2007. We have a healthy son Brent a angel daughter Addison, healthy rainbow Iva and a angel son Pierson. We are just a family that loves each other and tries to spend as much time together. We have learned from all of our past we appreciate the little things in life.
Thursday, July 21, 2016
Tuesday, June 28, 2016
The visit with my MFM
After we had our 12 week NT scan I knew we had to go see my MFM. She was the same person I transferred my care at 20 weeks with Addison. She knew my story, she knew who Addison was. I made a appt with her for 1 week later. That whole week before seeing my MFM it was a whirlwind of emotions. I was praying it would not be what Addison had because I knew that it would be once again fatal. I was praying it was some kind of mild heart condition or anything that would let this baby come home with me. I didn't care the disability or how many drs appts we had, I just wanted the baby to come home with me eventually.
I remember pulling into the hospital and all I was thinking was I can not believe I am here. I cant believe I am here again with a baby that is not healthy, why me?? Why me, again?
The tech started the exam. And on the big screen with much better technology was my baby. My sweet baby, that I was so excited to hold. My baby that I already made an entire life for in the short 13 weeks if its life.
The tech looked for the nucal fold, the one 1 week prior was a cystic hygroma measuring at 6.2. It was no longer their, it was thick but gone. She informed us if we would have came in today she would have not been worried about it at all, they would have not noticed anything wrong at that point.
Then she started to look for the other deformities that go with arthrogyposis. She started with its legs and feet. Right then an their I could see the legs were crossed and clearly clubbed. I was devastated to say the least. I confirmed with the tech for fact that was it's feet and its legs, and she said "yes". I confirmed with her again that for fact they were clubbed, and they were. Both feet looked like a hook, both very much curved. Then she went to it's hands and just like Addison they were both clubbed as well right over its heart.
At that point I knew this sweet baby I already made a life with would never come home with us. We watched to see if their was any movement, and other trunk with a bounce it did no movement from its hands, feet, arms or legs. She left and my MFM came in
She wanted to make sure that for a fact their was no movement. She wanted to do a ultrasound herself to really watch for movement. She did somekind of vibrating wand and I think this send some kind of waves to the baby to see if it would respond to the movement, and it didn't. But at the same time I could see it 3D on the TV. Their was our baby in 3D, both legs straight out crossed and clubbed and hands holding right over its chest, it looked so sweet. So little and so sweet right their, I wished I could have touched it and hold it.
The dr finished up her exam and led us to another room. I hate this room, this room is where the genetic counselor comes in and gives you this sad look and tries to give you information while trying to consoling at the same time. At this point I knew all the information they would give us, at this point we knew for a fact it was exactly what Addison had and for a fact its genetic. We talked about why doing genetic testing and autopsy would be important after the baby was born, to hopefully give us some more answers. We new that whatever kind this baby had it would be fatal just like Addison, we knew their would be nothing more we could do or try for the baby.
We had chooses again we had to make. Chooses that I hate I had to even think about. To carry the baby for as long as it let me or to medically terminate. Both are very hard chooses. I carried Addison for as long as she let me, and its very very difficult. After I had her I could understand why some people can't handle it. It caused extreme amount of stress before and after. I never knew if Addison was alive or dead, weekly heartbeat checks, late night anxiety attacks, not being able to get out of bed a really hard thing to do.
Let me tell you and to be honest with you, I was thinking to medically terminate. At this point in my life with a full-time job that I see a lot of people, with a very aware 6 year old and a active toddler I don't think I could handle this situation again. Not because it would be an inconvenience but because mentally and physically I don't think I would have handled it well.
We left the drs office just as confused and hurt as when I left with Addison.
That next morning I was getting my rainbow baby Iva her bubba I had a gush of bleeding. The baby in the end choose for me, I did not have to make that decision again.
I remember pulling into the hospital and all I was thinking was I can not believe I am here. I cant believe I am here again with a baby that is not healthy, why me?? Why me, again?
The tech started the exam. And on the big screen with much better technology was my baby. My sweet baby, that I was so excited to hold. My baby that I already made an entire life for in the short 13 weeks if its life.
The tech looked for the nucal fold, the one 1 week prior was a cystic hygroma measuring at 6.2. It was no longer their, it was thick but gone. She informed us if we would have came in today she would have not been worried about it at all, they would have not noticed anything wrong at that point.
Then she started to look for the other deformities that go with arthrogyposis. She started with its legs and feet. Right then an their I could see the legs were crossed and clearly clubbed. I was devastated to say the least. I confirmed with the tech for fact that was it's feet and its legs, and she said "yes". I confirmed with her again that for fact they were clubbed, and they were. Both feet looked like a hook, both very much curved. Then she went to it's hands and just like Addison they were both clubbed as well right over its heart.
At that point I knew this sweet baby I already made a life with would never come home with us. We watched to see if their was any movement, and other trunk with a bounce it did no movement from its hands, feet, arms or legs. She left and my MFM came in
She wanted to make sure that for a fact their was no movement. She wanted to do a ultrasound herself to really watch for movement. She did somekind of vibrating wand and I think this send some kind of waves to the baby to see if it would respond to the movement, and it didn't. But at the same time I could see it 3D on the TV. Their was our baby in 3D, both legs straight out crossed and clubbed and hands holding right over its chest, it looked so sweet. So little and so sweet right their, I wished I could have touched it and hold it.
The dr finished up her exam and led us to another room. I hate this room, this room is where the genetic counselor comes in and gives you this sad look and tries to give you information while trying to consoling at the same time. At this point I knew all the information they would give us, at this point we knew for a fact it was exactly what Addison had and for a fact its genetic. We talked about why doing genetic testing and autopsy would be important after the baby was born, to hopefully give us some more answers. We new that whatever kind this baby had it would be fatal just like Addison, we knew their would be nothing more we could do or try for the baby.
We had chooses again we had to make. Chooses that I hate I had to even think about. To carry the baby for as long as it let me or to medically terminate. Both are very hard chooses. I carried Addison for as long as she let me, and its very very difficult. After I had her I could understand why some people can't handle it. It caused extreme amount of stress before and after. I never knew if Addison was alive or dead, weekly heartbeat checks, late night anxiety attacks, not being able to get out of bed a really hard thing to do.
Let me tell you and to be honest with you, I was thinking to medically terminate. At this point in my life with a full-time job that I see a lot of people, with a very aware 6 year old and a active toddler I don't think I could handle this situation again. Not because it would be an inconvenience but because mentally and physically I don't think I would have handled it well.
We left the drs office just as confused and hurt as when I left with Addison.
That next morning I was getting my rainbow baby Iva her bubba I had a gush of bleeding. The baby in the end choose for me, I did not have to make that decision again.
Friday, June 24, 2016
12 Week NT Scan
We got pregnant a little unexpected with this baby. Iva was just over a year and let me tell you all it takes is that ONE time, I mean ONE time, that is it!! But even though we had that ONE time happen we were both so ecstatic about it. We new after Iva our rainbow we would want more, she was the sweetest baby and she brought so much joy into our lives. I new before that positive test popped up that I was pregnant, I just had that feeling. We kept it to ourselves for a couple of weeks. But there were times in the beginning I would have extreme anxiety about it. There were a lot of same things happening at that time that lined up with the timeline of Addison as well.
1 major thing was the due date, Addison's was June 11th and this one was June 9th. I really tried to push that to the side.
Another similarity was when we got pregnant with Addison we needed the basement to get finished so we could get more play area. In the early months we finished our basement with Addison. After Addison was born I needed a change so we sold and built a new house. A couple of weeks before finding out I was pregnant with this baby we hired a contractor to start to finish the new house basement. So another similar thing.
Lastly there was early bleeding, but I also had that with Iva but less. I tried so, so hard to push that anxiety feeling away, but at times I couldn't shake it.
We didn't see my MFM with this baby yet because our rainbow was so easy we figured we would be good. My regular OBGYN gave me a choice between the NT scan or the blood test and essentially we could find out as early as 12 weeks what the sex was. Even though finding out the sex was way more exciting I new I needed to see the baby, I knew that would be the only way to see how the baby was doing.
I had my appt right at 12 weeks, it was a Friday. I was so excited to see my little bean on the big screen. I actually had 3 ultrasounds before this 12 week mark because my obgyn likes to see the heart beat at 8 weeks, I had bleeding so we wanted to make sure everything was fine and the 3rd time just because. But her equipment was horrible, just horrible it was just a blurry blob! I was full anxiety but I tried to pass it off like nothing was wrong. Then the tech came in.. They had no medical history of Addison whatsoever. I noted on the worksheet about Addison and she was stillborn so the tech had some additionally questions for me. I answered and she started the ultrasound. And their baby bean was on the big screen, this little baby that I loved so much already.
I asked her how is the baby laying and she said that it was on his back, and that's when I saw it. I could see the cystic hygroma, my heart sank and tears started to swelter already. All I could think is I can't believe I am here again... The tech wasn't really doing much measuring but kept looking at the head and the profile to see how far the cystic hygroma went down on the babies body. It was not even 5 mins and she was done and sending the dr in. She walked out and I looked at Carl and I said the baby has a cystic hygroma, I think he already new it and could see it as well. We both couldn't believe we were here again, in this sterile room with drs that know nothing praying that what we saw was wrong.
Dr came in and he started his spiel... Once I started talking he knew that I knew a lot more then most other people did. He could tell I have been through this before. So their wasn't really much more information he could give me. I asked him how large it was, they didn't measure because it was big enough. I asked him to measure it and it was the same size Addison's was 6.2. I asked if he saw movement with the baby. Anyone that has had a baby or lost a baby that had arthrogyposis knows you always watch for movement. The tech didn't she saw that pocket of fluid and that was it she was done with that exam. So he response was " ummmm I think I did", seriously its not a think honey its yes or a no. But the dr had the courage to tell me that its most likely not what Addison had. I nodded because now I know this guy is a moron. He asked me what I wanted to do and I said I wanted to see my MFM, he understood gave me paperwork to get bloodwork done so I could find out the sex and that was it!
I left just heartbroken, walking down those long hospital hallways completely and utterly heartbroken all over again. I knew deep down in side it was exactly what Addison had.
1 major thing was the due date, Addison's was June 11th and this one was June 9th. I really tried to push that to the side.
Another similarity was when we got pregnant with Addison we needed the basement to get finished so we could get more play area. In the early months we finished our basement with Addison. After Addison was born I needed a change so we sold and built a new house. A couple of weeks before finding out I was pregnant with this baby we hired a contractor to start to finish the new house basement. So another similar thing.
Lastly there was early bleeding, but I also had that with Iva but less. I tried so, so hard to push that anxiety feeling away, but at times I couldn't shake it.
We didn't see my MFM with this baby yet because our rainbow was so easy we figured we would be good. My regular OBGYN gave me a choice between the NT scan or the blood test and essentially we could find out as early as 12 weeks what the sex was. Even though finding out the sex was way more exciting I new I needed to see the baby, I knew that would be the only way to see how the baby was doing.
I had my appt right at 12 weeks, it was a Friday. I was so excited to see my little bean on the big screen. I actually had 3 ultrasounds before this 12 week mark because my obgyn likes to see the heart beat at 8 weeks, I had bleeding so we wanted to make sure everything was fine and the 3rd time just because. But her equipment was horrible, just horrible it was just a blurry blob! I was full anxiety but I tried to pass it off like nothing was wrong. Then the tech came in.. They had no medical history of Addison whatsoever. I noted on the worksheet about Addison and she was stillborn so the tech had some additionally questions for me. I answered and she started the ultrasound. And their baby bean was on the big screen, this little baby that I loved so much already.
I asked her how is the baby laying and she said that it was on his back, and that's when I saw it. I could see the cystic hygroma, my heart sank and tears started to swelter already. All I could think is I can't believe I am here again... The tech wasn't really doing much measuring but kept looking at the head and the profile to see how far the cystic hygroma went down on the babies body. It was not even 5 mins and she was done and sending the dr in. She walked out and I looked at Carl and I said the baby has a cystic hygroma, I think he already new it and could see it as well. We both couldn't believe we were here again, in this sterile room with drs that know nothing praying that what we saw was wrong.
Dr came in and he started his spiel... Once I started talking he knew that I knew a lot more then most other people did. He could tell I have been through this before. So their wasn't really much more information he could give me. I asked him how large it was, they didn't measure because it was big enough. I asked him to measure it and it was the same size Addison's was 6.2. I asked if he saw movement with the baby. Anyone that has had a baby or lost a baby that had arthrogyposis knows you always watch for movement. The tech didn't she saw that pocket of fluid and that was it she was done with that exam. So he response was " ummmm I think I did", seriously its not a think honey its yes or a no. But the dr had the courage to tell me that its most likely not what Addison had. I nodded because now I know this guy is a moron. He asked me what I wanted to do and I said I wanted to see my MFM, he understood gave me paperwork to get bloodwork done so I could find out the sex and that was it!
I left just heartbroken, walking down those long hospital hallways completely and utterly heartbroken all over again. I knew deep down in side it was exactly what Addison had.
Thursday, June 23, 2016
*Arthrogryposis*
Arthrogryposis is something I have learned and studied a lot about the last 5 years or so.
What is it? Arthrogryposis is a umbrella to 400 different types and conditions. Being diagnosed with Arthroygposis is not actually the diagnosis its just part of something else. Arthroyposis can be caused by many different factors, environmental, maternal disease, pregnancy complications, fluke or genetically inherited. Me, me I carry a mutated gene oh and so does my husband. So when both parents carry the mutated gene and connect together we now have the chance on passing it on to our children. We have now have had 2 affected babies with some kind of genetic type of Arthroyposis. Totally sucks that I have done this to 2 of my babies...
Having a genetic type of this is very very rare, why you ask? Well because I have to find that same exact person with the same exact mutated gene to be able to even pass it to my babies. Well lucky me I have found my exact match, literally... Maybe I should try to play the lottery more often, I have some statistics stacked against me. Anways, so each pregnancy we have a 25% chance of passing it on and having a affected baby, then our current unaffected children Brent and Iva have a 50% chance of being a carrier and then a 25% to not be a carrier at all.
How did we figure out its genetic?
Well with Addison we weren't exactly sure if it was genetic. We never did an autopsy with her because I kinda new if we did it would be a shot in the dark of actually finding the gene. But in the back of my mind I always new, I new it was genetic. I go back when I was pregnant with Addison and Dr. Hall the geneticist that pretty much study her whole career on Arthrogryposis told me over the phone if she dies its most likely genetic. I kept that little side note with me all of these years. When I got pregnant with my rainbow baby my MFM told me it was 6-7% reoccurrence just because we didn't know what happened with Addison. But in the end Iva was a healthy baby, lets say unaffected baby. Well I got pregnant again about a year or so after Iva. I lost that baby at 14 weeks, another post I will write about. But we knew for fact he had the same thing as Addison did. So now we are classified of having a recessive mutated gene. Unfortunately we don't know what gene it is, the 7 we tested all came back negative...
What is it? Arthrogryposis is a umbrella to 400 different types and conditions. Being diagnosed with Arthroygposis is not actually the diagnosis its just part of something else. Arthroyposis can be caused by many different factors, environmental, maternal disease, pregnancy complications, fluke or genetically inherited. Me, me I carry a mutated gene oh and so does my husband. So when both parents carry the mutated gene and connect together we now have the chance on passing it on to our children. We have now have had 2 affected babies with some kind of genetic type of Arthroyposis. Totally sucks that I have done this to 2 of my babies...
Having a genetic type of this is very very rare, why you ask? Well because I have to find that same exact person with the same exact mutated gene to be able to even pass it to my babies. Well lucky me I have found my exact match, literally... Maybe I should try to play the lottery more often, I have some statistics stacked against me. Anways, so each pregnancy we have a 25% chance of passing it on and having a affected baby, then our current unaffected children Brent and Iva have a 50% chance of being a carrier and then a 25% to not be a carrier at all.
How did we figure out its genetic?
Well with Addison we weren't exactly sure if it was genetic. We never did an autopsy with her because I kinda new if we did it would be a shot in the dark of actually finding the gene. But in the back of my mind I always new, I new it was genetic. I go back when I was pregnant with Addison and Dr. Hall the geneticist that pretty much study her whole career on Arthrogryposis told me over the phone if she dies its most likely genetic. I kept that little side note with me all of these years. When I got pregnant with my rainbow baby my MFM told me it was 6-7% reoccurrence just because we didn't know what happened with Addison. But in the end Iva was a healthy baby, lets say unaffected baby. Well I got pregnant again about a year or so after Iva. I lost that baby at 14 weeks, another post I will write about. But we knew for fact he had the same thing as Addison did. So now we are classified of having a recessive mutated gene. Unfortunately we don't know what gene it is, the 7 we tested all came back negative...
Tuesday, June 21, 2016
Wow, its been some time....
Hello everyone!!
It has definitely been some time since I actually blogged. I was reminded just a couple of months ago that I once had a blogged and until today it seemed I did a lot of blogging... I spent most of my day today reading my pasts posts of my sweet Addison. Life has really changed since then and I was reminded how hard it was for me to live back then. Many have said "with time your grief will change" and that is absolutely true! I just celebrated Addison's 4th birthday this year, 4 YEARS have past without her. And again life has really changed!! Between building a house, getting pregnant with a healthy rainbow, getting pregnant again and once again loosing another baby, life has changed. I will try to come back and tell you whets been going on the last couple of years and get you all caught up!
It has definitely been some time since I actually blogged. I was reminded just a couple of months ago that I once had a blogged and until today it seemed I did a lot of blogging... I spent most of my day today reading my pasts posts of my sweet Addison. Life has really changed since then and I was reminded how hard it was for me to live back then. Many have said "with time your grief will change" and that is absolutely true! I just celebrated Addison's 4th birthday this year, 4 YEARS have past without her. And again life has really changed!! Between building a house, getting pregnant with a healthy rainbow, getting pregnant again and once again loosing another baby, life has changed. I will try to come back and tell you whets been going on the last couple of years and get you all caught up!
Wednesday, February 6, 2013
Will I ever be normal again?
The problem I already the answer to that question, and it's no. I have changed forever and the person that I used to be I will never be again. I will always have a different way of thinking, different way I look at things and who I wanted to be will always be different. I know going back to who I used to be would mean I would have never got pregnant and never would have never experienced the death of my daughter. That part of my life would have never happened. I would do it all over again in a heartbeat just to have her living in me again, but there's days were I just want 1 day that doesn't have heartache. The heartache I live with will never leave, yes not so painful but it will always ache for her. I guess I just want to be somewhat normal again.... The Anxiety about everything that I am unable to control would subside
. When will this happen, a year, five, ten or never??
. When will this happen, a year, five, ten or never??
Tuesday, February 5, 2013
It's been awhile.....
It's been almost 3 months since I have came on here. Life has been busy, so much has happened.
First my sweet 89 year old grandpa died right after Thanksgiving. The thing about my grandpa dying is what he was telling people before he died. He was telling people that my Nana was in his room with him. He would have full conversation with her and she would tell him all about heaven and how he had nothing to be scared. But, she wasn't the only one in the room, often there were children in the room and particular always by his side was a little girl with blonde hair and a white dress with polka dots. She was always by his side and the other children were on the back of the room. The little girl by his bedside he said was my daughter Addison. The newest grandchild that entered into heaven. He would tell everyone she looked just like me.
Obvious reason this was a lot to take in. I was scared to ask him questions about her but I was also in a way angry. Maybe not so much angry but jealous? I never talked to him about Addison, honestly I didn't see him after she was born. I still tried to hide away and honestly a lot of the time I still do. Well I saw him on Thanksgiving and pretty much said goodbye to him because he died the next day. I told him I loved him and to give Addison a hug and kiss for me.
Then came Christmas, we did get Addison a stocking and actually my aunt made a tiny stocking for Addison. It said our little angel Addison. She also lost twins when she was younger but like many she never talks about it. Time has changed so much and I am so thankful for that because it would be so hard for me to never talk about her. Christmas was hard on me. I feel like I relive things a lot still. I kept thinking that this time last year I was pregnant and I didn't know yet Addison was sick. I was so excited to celebrate Christmas the following year because we were going to have 2 children. But, reality sinks in and all I have is a empty stocking, a dream that was ripped out of me.
First my sweet 89 year old grandpa died right after Thanksgiving. The thing about my grandpa dying is what he was telling people before he died. He was telling people that my Nana was in his room with him. He would have full conversation with her and she would tell him all about heaven and how he had nothing to be scared. But, she wasn't the only one in the room, often there were children in the room and particular always by his side was a little girl with blonde hair and a white dress with polka dots. She was always by his side and the other children were on the back of the room. The little girl by his bedside he said was my daughter Addison. The newest grandchild that entered into heaven. He would tell everyone she looked just like me.
Obvious reason this was a lot to take in. I was scared to ask him questions about her but I was also in a way angry. Maybe not so much angry but jealous? I never talked to him about Addison, honestly I didn't see him after she was born. I still tried to hide away and honestly a lot of the time I still do. Well I saw him on Thanksgiving and pretty much said goodbye to him because he died the next day. I told him I loved him and to give Addison a hug and kiss for me.
Then came Christmas, we did get Addison a stocking and actually my aunt made a tiny stocking for Addison. It said our little angel Addison. She also lost twins when she was younger but like many she never talks about it. Time has changed so much and I am so thankful for that because it would be so hard for me to never talk about her. Christmas was hard on me. I feel like I relive things a lot still. I kept thinking that this time last year I was pregnant and I didn't know yet Addison was sick. I was so excited to celebrate Christmas the following year because we were going to have 2 children. But, reality sinks in and all I have is a empty stocking, a dream that was ripped out of me.
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