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.

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.  

*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...

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!