Arthrogryposis

Arthrogryposis is the name given to a group of disorders characterized by multiple joint contractures throughout the body present at birth. In the U.S., it occurs about once per every 3,000 live births, and affects both males and females of all ethnic backgrounds.

Causes
Arthrogryposis is usually caused by decreased fetal movements in the womb. The fetus needs to move his/her limbs to develop muscle and joints. If the joints don't move, extra connective tissue develops around the joint and fixes it in place.

Treatment
There is no cure for arthrogryposis, but early vigorous physical therapy can help stretch out the contracted joints and develop the weak muscles. Splints can also help stretch joints, especially at night. Orthopedic surgery may also be able to relieve or correct joint problems.

So this is a very brief overview of what we may be looking at. I had my ultrasound on Tuesday evening at the University Hospital Fetal Diagnostic Center. The baby wasn't sitting on his head, so we got a good look at his feet, which were concluded to be club feet. Instead of being on his feet, he was upside down on his head. Seriously. It's either one extreme or another. :) The nurse tried to push him around, but as we already know, he is stubborn.

His overall position (physical, not position in the uterus) hasn't changed much. He still has his ankles crossed with his legs slightly bent and his hands in fists up by his face ready to box whoever wants to fight. :) Dr. Burne came in and tried to get him to move his arms and legs to see how progressive the arthrogryposis might be..

She wanted to check at which joints he is able to move. So she took a hold of my stomach and shook him pretty hard and we watched on the screen to see if he would move around. It took a couple of tries, but we did see him moving at his hips and his knees. Then after a few more tries he did flex and open one of his elbows, but because of the way he was basically standing on his head and wouldn't move, we only saw one arm. We weren't able to see everything that we wanted to, but I was proud of him moving as much as he did. I was laughing and saying "GOOD BOY!" Dr. Burne and the nurse were laughing at me. There was of course no movement at his ankles and wrists, and he still hasn't opened his hands. I haven't seen his fingers overlap, and I'm hoping that they don't.

Bleu and I had decided that we didn't want to do any more testing. Dr. Burne told me that there are a few different kinds of Arthrogryposis. One type is pretty mild where the only things effected are the feet (club feet) and hands. Another is more severe where all of the arm and leg joints are effected either permanently extended or bent. There is a type that is progressive and is where all of the joints are effected, and the tissues preventing the joint movement build and swell also effecting organs such as the heart, lungs, and can move into the back. With this particular type, the baby sometimes won't carry full term, or die within the first year of life.

Dr. Burne suggested that I come two weeks later to see if there is any progression in the limit of movement. I told her about mine and Bleu's decision, and we talked about the advantages or disadvantages of doing routine ultrasounds. I told her that it might worry me to have appointments so often. So she suggested that maybe we could do a monthly ultrasound and check his growth as well as his movement. I told her that I would be having a check up with Dr. Luikenaar on Monday and discuss what might be the best thing to consider.

I talked to Bleu and he still doesn't want any more testing or extra ultrasounds. I think that if there is a progression, it would be a good thing for us to know, see how much progression there is, and then we can be mentally prepared for what is to come.

Bleu and I have both been praying about our situation and we are both comforted by the Spirit that everything is going to be alright. And it will be, but in my mind, that doesn't mean that I should sit back and watch life go by. I am going to play a part in this-I'm not going to just let it roll. Just because everything's going to be fine doesn't mean that my work is done for this assignment. It means that we are going to make it through, but what we do with it and how we handle it is the question. I will admit - I am scared. But I can face my fears better if I have been prepared. In D&C it says "But if ye are prepared ye shall not fear." I've made my mind up that there is nothing that can keep me from loving my son, and I know that Bleu feels the same way.

I feel like the best way for me to take this assignment is to have an understanding and to be prepared. I have done some research, and I'm more familiar with Arthrogryposis now than I was when I first heard Dr. Burne telling us about it. I feel like that knowledge can prepare me to make important decisions that I feel are right instead of going in blind and relying on what the Doctors tell me. I have someone right beside me leading me that knows a whole lot more than any doctor. But this is a joint effort. If I don't do my part, He can't do His part. I need to be prepared and know what's going on so we can work through this together.

I also know that another part of this is that Heavenly Father is teaching me that I can't do some things on my own and that I need to learn how to ask for help. Thank you everyone for all of the support that you are to us and the understanding, patience and prayers. Mom, thanks for being my shoulder to cry on (again and again and again) and being there to pick up the phone every time I call. Torrie, thanks for being my personal drill sergeant and encouraging me to be my best. Cheena, thanks for listening to my mindlessness and making me laugh.

I love you all, thanks again for everything you do.

Crazy Chromosome Lady

I was on my way home from work last night, and my clock said something like 5:03 or something like just after five. My phone starts ringing, and it's a number that I don't know. I answer it saying
"hello,"
And a strangely familiar voice on the other end replies, "Hello, is this Mickaela?"
"yes, this is she.."
"Hi, Mickaela, this is Dr. Suchandsuch, Genetic Counselor from University Hospital.."(I still have no idea what her name is because Bleu and I call her the Crazy Chromosome Lady.)
Somehow that rang a bell and the realization of exactly what call this was came to me just as she said, "I'm calling about your test results."
"Oh" I said. Looking around frantically for a place to pull over during 5 o'clock traffic down 39th South. No Luck. I would just have to control myself till I got home. "okay..."
"Well I do have some good news about your amniocentesis, but first, were you wanting to know the sex of your baby?"
"We were guessing it was a boy from the ultrasound......"
"Well the chromosome confirms that it is a boy."
"Okay..........."
"And we tested his chromosomes, and he has a total of 46 chromosomes, which is normal."

I felt ten pounds lighter. It's a darn good thing that I was at a red light, too. She went on, as I made the last turn for home.
"I do have some questions for you, however.... have you been feeling your baby moving at all?" (Here she is trying to rule out arthrogryposis, where the joints are stiff and sometimes contorted.)
I explained that I know I had felt him a few times for sure, and other times maybe and that I was still trying to distinguish baby moving from digestion (or indigestion :).
She agreed that it is a little early for me to be sure of what I'm feeling.
She made sure that I was still planning on having a follow-up ultrasound, which I had it scheduled at Greenwood Healthcare, my regular office on Tuesday the 27th. Because there is not a specifically trained nurse or doctor in Greenwood on Tuesdays, we rescheduled the ultrasound at the University Hospital so that I can have the right people doing the ultrasounds and getting immediate feedback.
She went on and said that after we check up on him and see if anything has changed, there are other tests that she might recommend..... "if that's what you want."

I took a breath, and the Spirit whispered that what I was about to say was true. I said,

"You know, I think that I'm done with tests. It just seems like too much of a worry. You know.. a lot of the tests are so 'maybe this and maybe that' and there's no way of knowing for sure right now and if there's nothing I can do to fix it, or to change it, than there's no point in putting him through all of this. I think I'll just go to the follow-up ultrasound and check up on him, and if his feet are perfect and his hands are open that's great. If nothing has changed then I will just wait till he's born and see how it goes. I have absolutely no problem with having a disabled child. If there's anything wrong I would just rather have a doctor physically look at him when that time comes."

She didn't interrupt me or say anything and there was a pause..... and she said, "Okay..." like 'If you say so.....' and said that she would see me in a few weeks at the ultrasound.

I've done research on Edward's Syndrome and Arthrogryposis. And I've almost memorized the ultrasound pictures and videos. I know I have never taken a medical class in my life. But I think that my son is perfectly fine. I know what I see when I watch the video of his hands and just half of a second before the end, he moves his fingers, and I've watched him move his legs and arms and head so many times that I can play it in my head. His wrists are straight-arthrogryposis contorts the joints and ligaments. He may have club feet.....possible. But we can only wait and pray for the next ultrasound to go well! I hope this video works on other computers, cause it doesn't work on mine. :) But watch the top hand just before the video's over! Ha! he moves his fingers! Doctors. What do they know.



I scheduled the ultrasound today with a nurse at the Diagnostic Center and we decided that I will go at a different time of day so the little twerp isn't sleeping. She told me that if I eat a good lunch that day, my body working to break down the food will make him more active, and also to eat a good snack on the way or just before the appointment. I've also heard that COLD water wakes them up, too. So! He's going to be complaining that we are keeping him awake. Good. Then maybe he'll move around some more and show us his fingers and toes.

I did feel him moving tonight after dinner. It was interesting. I was laying on the couch and felt a slow but firm pressure on the right side moving up, and I put my hand there and it was harder than the left side. Then I felt it sink away from the pressure of my hand. It was so funny! And I just felt one of those "flutters" just now. It's fun to be able to recognize those weird feelings.

OH! I just felt him again.....Maybe he doesn't like Pork Chops.......... Hmmmm..

One Down... Infinity to Go!

Well yesterday was mine and Bleu's anniversary. Can you believe it's already been a year? I asked him if he thought it went by fast and he said that there were some parts that did, and some parts that didn't . I agree. The first 6 months took a long time... between getting used to being married, going back to school, getting pregnant, enlisting in the Army, miscarrying...... that was a full 6 months. :) The summer was nice. We played on the company co-ed softball team and worked the same schedule, ate lunch together, came home at the same time....... The fall was exciting because we had just discovered that we have a little bundle of joy on the way!

Bleu was able to call me last night and we got to talk for a few hours. It was a nice anniversary present. For only being gone just over a week, we sure did have alot to talk about. Plus we knew that he won't have the opportunity to call next week so we will go two weeks without talking to eachother. Bleu leaves for a seven-day camp out this Friday. He said that basically when they get back, they will turn in most of their gear and get ready for graduation. It's exciting that it's coming so quickly.

I have never been anywhere east of Montana or Wyoming- so I am pretty excited to be able to fly to South Carolina for Family day and Graduation day. We will be able to spend some time on and off post before he leaves for AIT.

Bleu said that there will be a lot more freedom at AIT. We are thinking it might be like him going to school away from home, like a study abroad. There is rumor that there might be two to four men in a room, or appartment. He also said they might be able to have computers there. If that's true, he will probably buy a laptop and a web cam so we can talk to eachother more often and see eachother's faces. It sure would be better than just talking on the phone for an hour once a week!! So we are both very excited about seeing eachother at the end of the month.

As for the wee one, we are still waiting on test results. I guess I'm not too worried, because sometimes I forget all about them. Who knows if that's a good sign or not. I have felt him moving and doing summersaults a few times. Sometimes it's exciting, and sometimes it makes my stomach irky... But I love to feel it either way. I'm really really hoping that daddy will have a chance to feel him when I go to graduation, but we'll see. For now we will just take everything one day at a time and enjoy it while we can.

From the mouths of Babes....

This year's theme for Primary is "My Eternal Family" and Sharing time today was about temples.

We talked about why temples are important and why they help us get an eternal family.

The teachers all told the kids which temple was their favorite, and of course all of the women said that the temple that they were married in was their favorite and the two men both said that the temple in their mission was their favorite.


Well we have a new member of the Primary Presidency so she was able to hand out stickers to all of the kids for participating in the lesson. Before she gave them a sticker, each child was asked to tell her their name and which temple was their favorite.

And here are some of the answers that we heard "from the mouths of babes", or our sunbeam class.

• "The one my mom and dad went to."
• "The one up on the hill and it's really big."
• "The Hawaiian Temple"
• "The United States Temple"
  
• "The one that's really tall and it has Jesus' friend on top of it."

All of the teachers were getting a big kick out of it. Then one of our oldest kids said his favorite was "The California Temple" and we asked which one, he replied "I don't know but it's in California."

I love Primary.

Mommy's growing

During Christmas Break, Bleu said that my tummy was getting big. I said of course it was.... and he said "no, I mean like since I've been home!" I didn't really notice much till I had Sara take a picture. :)

This is me after a big meal at 13 weeks. When I saw the picture I thought I looked like a mutant because my stomach was so big and I blamed it on the food from the Ward Party.

This is me at 17 weeks. Bleu wants pictures of me while I grow, but they won't let him have any pictures if there is "too much skin." He said that they probably would take my belly pictures away. How dumb is that?? So this is the no-skin picture for Bleu.

And this is my scandalous "too much skin" picture.. Crazy difference, huh? People aren't afraid to ask if I'm pregnant anymore cause I really do look like it now. The funny thing is that there are a few other girls that I know who are further along than I am and you would never guess that they are pregnant. They barely have a pooch at all, and I'm a hippopotamus. But that's okay cause I'm so excited and proud of my big tummy. Bleu loves it, too. And that makes me feel great.

The girl that took our wedding pictures is really excited because I asked her if she wanted to broaden her portfolio with some prego pictures. I think it will be fun. I think I'll take some around the middle of the pregnancy and then right at the end. Then a few of the baby right after he's born. We are both excited about it. It will be a new experience for both of us.

Well Bleu has come and gone. It seems like the two weeks before lasted forever and the two weeks we spent together passed in no time at all. It was a great Christmas Vacation away from 60 smelly guys for him, though. He said a few times that I smelled SO MUCH better than any of them. :)

When I talked to him the Sunday before he came home, he said that he was going to try and change his flight plans when he got to the airport because he would be spending some of the night and most of the day in the airport. So at 6:30 am on Thursday, December 18th, I got a text message from him saying that he got a flight that would get him to Salt Lake by 6:50 that night instead of the original plan of 11:50. I was excited. I planned on working till 5, running some errands, and that would give me just enough time to get to the airport in time to pick him up. So the hours creeped on that day. Then while talking idly with some co-workers about nothing in particular, I heard Jodee, a girl at work just outside the door yelling "oh my gosh! HI! I hardly recognized you!!" and I thought, "geez, who is she talking to?"

And guess who came bursting, and running through the door!? My sweetheart husband, Bleu. I jumped off of my chair and he nearly knocked me over hugging me. After he caught his breath from running, he explained that he'd changed his flight plans again, but didn't tell me because he wanted to surprise me. Boy did he. It was great. But the funny part was how he got to WesTech.

He was sitting next to an older couple on the plane, the man being pretty fragile and on oxygen. He kindly asked if they needed help with their large luggage, and they said, "oh, that would be so nice, thank you!" and he replied with.. "Good, and then can I have a ride?" The couple was from Pleasant Grove, so Murray was not out of the way and they were thrilled to help the handsome soldier. :)

We had a great Christmas and an adventure going up to mom's in the snow storm. Let's just say that Malad Pass upheld it's name in my opinion. I'm glad I was asleep for a lot of it.

One request that Bleu had was that he could come to a doctor's appointment with me.... Specifically an ultrasound. So after talking with Dr. Luikenaar we scheduled one the morning of New Year's Eve.

The appointment was at 8:20 so we were there just after 8 to check in. The Stenographer was really nice and fun to joke with. She said that because I was 16 weeks instead of 18 weeks, there were some things that we won't be able to see because they aren't fully developed yet. But for 16 weeks, the baby was developing at the right pace.




She measured the head, and head to rump and everything was just the right size, the heart was pumping strong and steady, and at the right pace. She said that she was sending all of the pictures to a doctor, and that she would come in soon.




She asked if we wanted to know the gender and I told her that if she's sure, then to tell me, but if there is any "maybe" that I don't want to know. She laughed and said, "Oh, I'm pretty sure." She moved the sensor around a little and announced at the very same time that I saw loud and clear on the screen. "It's a boy." He's not shy about it either.

So the Doctor came in (not mine, but the one on duty at the time) and took over with the ultrasound. She was looking a little more thoroughly, said that she wanted him to open his hands so we can count fingers. So they giggled him around, and the stubborn little rug rat was asleep and wasn't about to perform for anyone.

She was also trying to poke him around to get him to turn over because he was kindof sitting on his feet and they were turned in. So after about 5-10 minutes of using my belly as a trampoline, she said that there is a concern when a baby doesn't open their hands. And also, with his feet turned in they were looking like club feet. So between the two they wanted me to go to the University Hospital to have another ultrasound and hopefully he will have changed positions, maybe woken up by then.


This picture is the hardest one for others to make out. I've looked at it so many times that it's like cake. lol. Okay. So we are looking at him like he's laying sideways with his feet on the right side. The blobs on the left are his belly, and the circle in the middle is one of his knees. The oblong shape under that is his knee and shin, and the little thing at the end is his foot, toes facing the top of the screen, by his kneecap.. See how it turns in?? It's against the wall of the uterus in this picture. If you look close, you can see his other foot in the background going the opposite way.

So we saw Dr. Luikenaar next, and she said that there are a few things that could be happening.
1. He's asleep and curled up and stubborn.
2. he's sitting on his feet
3. there is a chance of a Chromosomal disorder causing the positions
4. there is a neurological disorder

So she said that if not much has changed at our next ultrasound, we may be given the option to have an amniocentesis, where a needle is inserted through the abdomen into the uterus to collect amniotic fluid for hormonal and chromosomal testing. But she wanted me to schedule another ultrasound to check up on him. So I'm having a follow-up ultrasound on the 27th of January.
So we went to the University Hospital and sure enough, after two different ultrasound machines, and shaking and bouncing him around, not much had changed. So a genetic counselor came and spoke with us about all of the possibilities and her "concerns"

She was one of those people that tried to make us feel better by wording things very gently. She was no help. I wanted facts and she spent most of the time trying to comfort me. She gave us a lot of "we don't know"s and worst case scenarios, which made me feel awful. Then talked about all of the different Chromosomal abnormalities and how some parents are "uncomfortable pursuing the pregnancy" in such a case. She was giving us abortion as an option.... I couldn't believe it. So with all of the mixed reviews and everything just being flooded into my brain, she said that they thought it would be a good idea to have an amniocentesis and explained that there is a 1 in 500 chance that it could cause a miscarriage but they believe that the advantages of having the test out way the risks, and if we find that there are these problems then we can go from there, but if we don't then we have some other tests that we can do and what do you think? We can do it right now if you'd like, just sign here stating that you know the chances of miscarriage, and here's your room the doctor will be right in. I felt like it was an avalanche of emotions and information and doubt, and confusion, I didn't know what else to do.

So we had an amniocentesis and I cried the whole time more from not knowing if we were doing the right thing than from the pain (don't get me wrong, the pain was more than enough to make me cry). But I'm done with tests. If we find out that there is a chromosomal problem then we will go from there. If not, then if there are any other problems they can wait till he's born. I won't love him any less no matter what. There are chances that he will be autistic, have edward's syndrome,(please don't look this up, it's not fun.) or even not make it at all. And we love him so much already.

So that's what is on our plate right now. I have had time to think about it and I feel Semi-prepared for anything that happens. I've miscarried once, so I know I can get through that. I know it's going to be quite the experience no matter what happens. I do ask for your prayers for him. I know that Heavenly Father has given us this assignment for a purpose, and I know that I'm stubbornly independent. This must be the only way He can get me to ask for help. I can do this, but I can't do this alone. I know that I will always have Bleu's support, and my family's support. I love you all and again, I ask for your prayers for our little boy. Thank you so much for being the wonderful, loving family that you are.