Monday, November 30, 2009
the baby is fine.
And she is indeed Julia and not Hambone - which is what the husband decided we would name a boy. (Dear Lord).
I don't really know what to say. The relief is so complete, so overwhelming.
I called my OB and asked if there is even any reason for me to RETURN to the perinatologist. Apparently no one ever asked that before, because the nurse didn't know what to say and they are going to call me to tomorrow to let me know what HE says.
Life is good. It really really is.
Sunday, November 29, 2009
I don't care about the presents
Underneath the Christmas tree.
I just want you for my own
More than you could even know
All I want for Chrismas........
Amnio Results tomorrow. We'll let you know.
Saturday, November 28, 2009
Just a little boy who simply COULD NOT WAIT I suppose.
After brunch though, it was time to get cookin'!
To launch the process the boy did his "shaking of the spices" dance.
Then we assembled the items to go inside the bird! Oranges and sage are delish!
And then they start working the bird!
It's such a weird holiday at our house. We don't have people over, it's just us hanging out doing our thing, but still - even with just US it's a wonderful family day. We just do our thing and I enjoy the day so much. I'm not sure it would be so special with a crowd.
Home-made whipped cream anyone?
And as you can see, the boy has made us all placemats and is wearing a lovely salute to Native American which he made at school.
Native Americans were well known for their macaroni necklaces I think.
I hope your feast was happy and joyous. I know ours was.
Thursday, November 26, 2009
Being Hoosier........we're rather......well.
Plain. We don't like a lot of wild or fancy things and we're all mostly German Irish but somehow washed most of that out of ourselves except during Oktoberfest when of course we're all German even the Irish.
So you can imagine my joy when I realized that we did indeed have something PURELY HOOSIER that I could make for Thanksgiving. My favorite pie in the world, that I have sought in every grocery store at every holiday since we moved away from Indiana in 1999.
THE SUGAR CREAM PIE.
It's ridiculously simple to make, and now after reading about it I realize it's the pie you make when you only have a few things around on the farm and WANT a pie.
Waddya know, we've GOT A TRADITION!
We choose the first recipe from a list we found - from someone whose Grandmother's recipe it was, as it said her grandmother was Quaker and that rhymes with Shaker so I figure we'd go for it. If it's not exactly the way we want it, we'll go to the next one on the list.
While it baked, the big boy did another one of our traditions that is a new one - started by his teacher last year, he made place mats for the Holiday. He actually had one at school to bring home but he had to leave school early because of my amnio appt and didn't get to bring it home. But he's such a cheery boy, he didn't care and excited made new ones.
We're ready for Thanksgiving with our Hoosier Pie and our home made place mats! Now- BRING ON THE TURKEY!
Wednesday, November 25, 2009
Tuesday, November 24, 2009
And BLOOD DRAWS WITH LOTS AND LOTS OF VIALS!
AND AMNIOCENTESIS! Can I get a WOOT WOOT?
Ok ok ok. lots of people want to know what all went on and what all happened so lemme recap.
First we met with the genetic counselor, who was actually quite nice and very not-scary and she took our family histories for bad DNA, explained the amnio again and then offered us the opportunity to participate in two different studies. One will use our chromosomes to help determine if they can link specific chromosome abnormality to diseases (outside of the big ones they already know about). They're talking about super super small defects or irregularities that have to be seen with the microscope. Of course, I'd be a dick if I said NO to that - it could provide SERIOUS help to people in the future.
The second study is one where they are trying to be able to detect Down's Syndrome via blood draw AS ACCURATELY as they do with amnio. I had to donate extra blood and extra fluid to BOTH of these studies. But again....especially after HAVING the amnio - I'd do anything to help someone NOT have to go through that.
The blood draws sucked as blood draws do. I'm no hero. I'm not tough. People will say "But you've had three kids!" and I'll respond that YEAH, and I'm a total fucking whiny baby throughout the entire childbirth process too. You don't want any part of me during labor until I'm properly drugged up because I am NOT a trooper. WHY? Because there are no REWARDS for being a trooper. So I'm going to be exactly as big of a baby as I feel like being.
But the amnio-ack. Ok I admit I went in terrified and then they TOOK so FUCKING LONG to get to it (we were there like 4 hours) that my husband had to LEAVE because our kids would be getting off the bus. So then I'm on my own. The doctor that we don't like much (not the one from the phone call) was actually really sweet and realized I was scared and did her best to be super kind and supportive.
Here is what it is like. When the needle goes into your skin, it's like a blood draw, kind of like damn that sucks. When the needle goes into your uterus.....it feels like a hot metal rod. I can't explain it any other way. It feels huge. It's not a damn pinch like they said. It's unimaginable and it feels exactly like what it is. A piece of metal inside you.
I might have done better, and be less whiny but the baby kept moving, stretching up into the empty pocket where the needle was.
And she kept having to withdraw "slightly". Just enough to repeat the most painful part of the procedure over and over and over.
But suddenly I felt a much sharper and WORSE version of the same pain and then she says "OK we're done."
I had been gripped the sides of the table so hard, and clenching so hard, I could barely stand up. They tell me THEN that I can't go to work tomorrow (WTF?) and that I'm supposed to take it easy and lay around like a slug for 24 hours.
I came home and had peanut butter, cheese, crackers, chocolate covered cherry and a glass of wine and slept. I am not sure if I am physically hurt or just emotionally scarred.
I could have results as early as tomorrow for the "fast screen" or it could be Monday due to the holiday.
So there you go. You are all caught up.
Sunday, November 22, 2009
He was the only "Tiger Cub" present. I am sure that this is because the other boy has ALSO dropped out now.
He lost both of his races, but won 1st prize for best design. Oh what was the prize? Oh there wasn't one. Apparently it didn't occur to anyone that there should BE prizes.
So I am now going to help you out, Boy Scouts of America. I am going to help you with some words of wisdom from someone WITH a clue.
- Everyone has to know what is going on. This means you have to speak loudly, and clearly and concisely. I know you're very worried about some prayer you wrote - but Jesus wants you to SHARE information, not just mumble prayers that no one can hear.
- Have a plan. I cannot stand to watch 5 adults in the front of a room and none of you know what you are doing, reading from papers you haven't looked at before THAT moment in time. Seriously, it's cool if just ONE of you does it all - as long as that one is prepared. Jesus wants it that way also. He likes it when you don't look stupid.
- Initiate and instill camaraderie. See - the biggest thing that children, especially young children, learn in scouting is camaraderie. It's the forging of friendships that isn't built around television and video games. You would think, if nothing else, that experienced leaders would be prepared to pick up one extra den meeting a month VS. sacrificing two entire dens. Some of you people live and breathe this stuff-I know you do, I can tell by how well pressed your uniform is. You are failing. Spend less time ironing, more time figuring out how to include EVERYONE.
My little boy has been told by the BSA that he is unimportant to them. He is only 7 so he doesn't perceive this. But I do. It's even been suggested that we just "go through his handbook with him". Wow, cuz that's fun.
I loved Scouting. But this is nothing like Scouting. Maybe I should put him in the Girl Scouts.......
Saturday, November 21, 2009
Thursday, November 19, 2009
I went last Friday for my next round of sequential screening - and they RAVED about the baby on ultrasound. She looks great, everything looks great, and I quote "WE HAVE NO CONCERNS".
Then I get the call from Mr. Bedside Manner. Oh excuse me, DOCTOR Bedside Manner.
I hold my breathe while he talks. "Well all of your risk factors have shot way up, we're especially concerned about your trisomy 18 risk factor which has shot to 1:85. We are going to need you to come in next week for more ultrasound and additional screening tests."
And I sob.
Trisomy 18, if you don't want to click on the link, means death for your baby. It's an extra chromosome on pair #18 and it includes horrendous birth defects and odds so bad - I'm amazed everyone doesn't terminate on the spot. It is a cruelty that I didn't even know existed and now they're telling me Julia could have it.
Oh and don't forget DOWNS. Like, Downs figures aren't as good as they were either - but hell, I'm barely even PHASED by that in the face of the other.
So I got off the phone and I sobbed and sobbed and I called my husband hysterical and I sobbed some more and I just sat there.....I felt adrift. Like I'd been cast out of the lifeboat and no one else was in sight.
And then I got mad.
If this was so fucking dangerous WHY didn't Dr Bedside Manner suggest amniocentesis immediately? I called their office back, still hysterical, and DEMANDED an amnio. I wanted it YESTERDAY. They put me through to a genetic counselor who I was probably not that nice to but I was fairly busy sobbing and screeching and telling her I HAVE TO KNOW I WANT AN AMNIO RIGHT NOW.
So they made it happen, for Monday.
And I was still hysterical. I couldn't think all day yesterday, I was in a blind panic and felt like everything was just over. Done. I didn't sleep right, I had nightmares all night and I frankly faced today fairly numbly.
So today I called my regular OB and told them I was cancelling my appt for next week, and that I'd reschedule after I got the results of my amnio. I just couldn't take going to that office, seeing all those big bellies and smiling faces........and knowing that my baby might never breathe. Of course, in the course of that conversation I again began sobbing and hitching in what I can best describe as an undignified pregnant woman with raging hormones trying to sound rational and in control.
It SO did not work. They immediately put me through to my nurse, who told me my OB was in surgery but he'll call me tomorrow. And to calm down. Duh.
So then, I called my high risk OB (yeah I have TWO, don't be jealous.). I explained that I wanted answers, I wanted to understand my scores and if they were integrated scores or individual scores and also - I wanted to know WHY they changed so much.
Dr. Supersweet and Understanding called me back.
The firs thing he said was, "You do realize that your odds, despite having worsened, are still better than double those for your age group?" Which - I swear to you the other doctor told me the OPPOSITE. I began to calm down. Then he walked me through why he's not immediately concerned about Trisomy 18.......he said it's fairly pronounced, and while he can't PROMISE, he sees nothing on ANY of my ultrasounds that indicates she has any of those birth defects - which are physical and just tragic. He said, reiterating what I have already heard, that on ultrasound, she's looking very good.
He also said that he understood that I wanted an amnio, that not knowing is very taxing and hard when you have all these hormones raging - and an amnio can provide reassurance that nothing is wrong or define what IS wrong, if something is.
I got off the phone feeling better.....able to breathe. I made an appointment with a genetic counselor because he asked me to and said he felt it was important so FINE. Then after that we'll do amnio and results will come back within 2 weeks, I guess depends on how long it takes them to match up and count chromosomes. If I remember properly from high school it takes a while to figure out which are exact matches. :)
Yesterday, I thought the world had ended for Julia and that I was going to have to decide to carry her to term just to watch her die, or make the ultimate decision and grieve sooner rather than later.
Today I feel better. I'm still fairly emotionally raw. But I'm better. And my husband made me laugh hysterically several times this evening.....so I think that is a good sign.
I leave you with, something to make you smile.
Tuesday, November 17, 2009
Great big, five year old babies.
We were at the grocery, pushing our two five year old babies around in carts, buying soda pop, and the 7 year old was babbling on about Star Wars and I saw a woman looking at the twins with a doting smile. She catches my eye and says "Oh how old are they?" I answer that they are five.
And then she says "Are they on the Spectrum?"
This is when my heart wrenches out of my body.
Yes, I tell her. They are both autistic. She tells me they are so cute, and we talk about their degree of disability. I learn she also has a son on the spectrum AND she teaches autistic children at a nearby school. She meant no harm or disrespect. She was very kind.
But I hate it that people notice.
I hate it for THEM and for me. I don't want you to see their disability. I want you to see that they hug and kiss and know all their abc's and numbers and that they CAN INDEED talk....they just don't quite understand it. I want you to see them greet me with total enthusiam when I walk in the door and the way they snuggle into my arms if they are sleepy during family time at the end of the night.
I want you to hear them laugh hysterically at Grover and at the Teletubbies.
THEY ARE JUST CHILDREN. They are not their disability.
At a recent meeting of our local support group - a parent described finding out their child was autistic as "losing" that child. At first I felt I understood - but in fact, all we lose is our IDEA of what they will be. When in fact, we never knew to start with what would become of them.
Our children are not who we think they are and will not be who we think they will be whether typical or not. And even though my beautiful twins were diagnosed with Autism this year....I didn't lose them. All this means is that their possibilities shifted - but not dissolved.
I don't see them as disabled. I just see them as who they are. I have to wait to find out who they will be.
Saturday, November 14, 2009
I was going to call her, after my trip to the OBGYN, to tell her I was pregnant.
I had an appt for a 8 week ultrasound and despite the massive amount of hormones I was on due to some earlier bleeding - I was looking forward to giving her a call.
Until I had my appointment.
That was when they told me it wasn't a baby, hadn't ever been one - and that it was time to let it go on it's way. Except that it just led to almost two weeks of one of the worst physical nightmares I've ever had.
Instead of calling my mom to tell her happy news, I called her and cried. And she cried too and it was a fairly miserable present to give her.
So this year, I was scheduled for a visit to the high risk OB - on November 13.
I got a little paranoid right before it - as you might've noticed from an earlier post. I just kept thinking,"This is too normal. This is TOO ok. Something is wrong."
When they started the ultrsound.....I held my breath.
Until she moved.
She is beautiful. And by the little glimpse she gave us of the goodies - she is in fact a she. We'll super double check that in 30 days or so. If she is, in fact, a she - she will be Julia Suzanne. Named after the Beatles Song Julia - and my mother's best friend Susan who is far more family to me than most of the people I'm related to.
Not familiar with the song? Well you should be. I'm going to be singing it a lot from now on.
Thursday, November 12, 2009
I keep forgetting I'm pregnant.
Now, don't get me wrong. My already gigantic G size cup boobs are even bigger and my round ligaments are stretching and hurting.....I've got the pregnant aches and pains.
I can feel the baby moving when it suits her (still saying HER)......but like.......
I guess all that constant vomitting was validating the pregnancy to me somehow. And now it's stopped.
I put a rational mind to it earlier, and realized that the last two pair of slacks I can WEAR used to be so BIG on me my husband would say they looked like CLOWN pants, and now they fit. And suddenly - I swear JUST tonight - my jeans are too tight.
I know part of it is anxiety because of the past two miscarriages and I can digest that ok. I can look at it objectively and say "You're looking for something to be wrong." But in fact.....if I'm sitting still like I am now.....
I don't feel pregnant.
Now of course, to make me a liar the little 16 week old human just flooped around but you get what I mean. If I took my bra off - I'd feel it. I'd be wishing I had a midget to walk in front of me to hold up my boobs. A strong midget, might I add.
But there are these weird moments, when I forget - until some ache or pain brings me back to it.
Maybe I felt this way before, but I sure don't remember it. Maybe I'm just worried or nervous because of all this ADVANCED MATERNAL AGE talk.
I go tomorrow for my next visit to the HIGH RISK OB where they are again going to rave about my ADVANCED MATERNAL AGE and then we are going to have one long drawn out ultrasound while they hunt for neural tube defects. Personally I am against these, and have decided we won't have any.
What I am looking for is the wiener. Or lack thereof, more specifically.
This, according to baby center is what my tiny human looks like.
My ass looks really good, don't you think?
I can wait to see her or him tomorrow. And yeah, I'll admit it. I'll feel a twinge of sad if it's a him. But it'll pass - and all I will be is excited about another beautiful boy in my life. All I want is healthy. Healthy will do.
Saturday, November 07, 2009
Apparently people with autism are somewhat offended - however, as a parent of austistic boys - I understand the words - written by the parents of autistic children.
It is a nightmare.
Friday, November 06, 2009
The true measure of a man, I think, is what sort of a Father he is. Does he let you help cook when you are little, so that you feel included?
My children are so lucky. Their father wants them to have the happiest childhood possible, and on a daily basis tries to fill their hours with memories to carry through out their lives. He isn't a father who's absentee all week and then gives them tacit attention on the weekends. He's 100% plugged in all the time.
And I'm lucky, because I chose a man who isn't afraid to make being a Dad a real job. Because of him, we have two autistic twins that we can take everywhere - which never ceases to amaze educators and doctors. They know how to act, and they are well loved.
We have a seven year old who is extraordinary and kind beyond reason some days. Because of the words and lessons he heard from his father every day.
Being a parent isn't easy. Being a parent of special needs children is downright torturous some days. His heart, and his unwillingness to ever give up make him one of the greatest heroes I've ever met.
Today is his birthday. He's 41 and I only wish I had met him sooner - because I am jealous of all the days that came before we met. Since I cannot have those days, my only wish will have to be this - if he lives to be one hundred, I hope I live be be one hundred minus one day.
So that I never have to live one day without him.
I love you Hunny.
Wednesday, November 04, 2009
I was getting dressed innocently enough this morning. Underwear, bra, knee highs, t-shirt and then I pull on my pants.
My pants don't fit.
Now it's not like this event is COMPLETELY unexpected. I know the baby grows and I'll have to get maternity pants but it's like - OVERNIGHT my pants don't fit.
What is she DOING in there?
Luckily I have a couple of pair of pleated pants that are pretty loose in regular, non-preggo times and I slipped a pair of those on before running out the door.
But I'm floored - I have another pair just like the ones I put on this morning and I know they fit like three days ago.
The big belly cometh.
I can hardly wait.
Monday, November 02, 2009
To which I say "Ummm - yes - why?"
"Because," he says,"I wanna listen to something that rocks."
Clearly his current social circle likes to ROCK.
Due to a vicious round of rotovirus or norovirus or whatever it is that SHUT DOWN my kids school on Friday - we were all busy barfing, or laying on the bathroom floor, or pooping, or barfing and pooping, so we didn't get to carving all the rest of our pumpkins. Thus - PAINTING PARTY!
With some help from Daddy with the littlest boy's pumpkin - we were ready for Halloween!
Of course our neighborhood is full of old fogeys who don't turn their lights on or give out candy so we went to a nearby neighborhood to give them a scare!
That's right, a banana, hot dog and a Clone Trooper (Captain REX to be exact) are on the loose. NOW GIVE US SOME CANDY!
You don't think we're scary? OH REALLY? How about NOW........
STILL NOT SCARY? Oh well.......I've got your scary coming then.......hold on.....
Yeah, I thought that would get you.
Silly holidays like Halloween are some of the best parts of being a Mom. Even the twins got it this year and were excited as we went around getting treats.
Next year - NO ROTOVIRUS!