A Little History of My Pregnancy with Violette...

Fair warning, this is a long and probably quite boring post...unless it is interesting to you. I talk with a lot of pregnant moms over on the Baby Center Down Syndrome Pregnancy Board, and I think this will be a nice resource to point them toward in the future.

I thought it might be good for my brain to write down everything I remember about my pregnancy - might help some other mama's to know where I was as I was going through things. I was given 1 in 16 odds that Violette had DS sitting on an airplane by myself coming home from a big presentation in Washington DC. I had the Ultrascreen test right after Christmas.

When I was on the plane, I had checked everything through and was just planning on reading a book. I had a pen that I think I borrowed, and an envelope from the hotel I stayed in that was the only thing I could write my thoughts out on.

I'm going to transcribe them here...these are just my initial random thoughts processing this news that my world could be DRASTICALLY changing (that's what I thought at the time - now I feel like I totally over responded to the reality of what was going to happen to our lives and our family.)

First a few posts from right after I found out I was pregnant:

January 2 - The first 13 weeks went by pretty quickly. I'm on pins and needles waiting to hear back on my Ultrascreen test (that tells Downs risk and Trisomy risks)...I may post some pics of the ugly alien baby soon!


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January 2 - Let's all pray that this baby gets a lot of charming personality, cause I don't think it is much of a looker, lol...



January 4: here are my Airplane notes in no particular order...

• Love them all
• Joe - advice (this was about my dear friend Joe who grew up with two foster brothers with DS)
• Be ready for the baby)
• I knew/know the risks
• Nothing changes, still a person to love and care for
• School situation?
• Forest Hills is excellent if it is to be. Lili + baby (this was about where to send Lilianne to school - still not decided)
• There?
• Find out sex? (thinking I'd bond better with the baby if I did - I didn't end up finding out)
• Telling Vivianne
• Options
• Amnio ASAP
• Have Steve quit work? (LOL, no one needed to quit work)
• Push forward at my job and work like heck
• Worse things than a DS baby
• Anything else tha could be wrong with the baby
• Pray
• 1-16
• 1111111111111111 (and then I circled one of my 16 hashmarks - each mark was a baby, lol)
• Why would it be me/us?
• Because we can deal with it
• If the screen shows it, and amnio isn't DS, could baby have other undetected problems?
• Telling others at work?
• Face it. Deal with it. Like when my friend Joe was in an accident and lost his teeth, this can't be changed, or undone make the best of it (with a heart drawn at the end of it)
• Take care of me and Steve
• Optimism about this too.
• If all of the people I know that have children with disabilities can deal with it (and if my friend's parents chose to) we can too.
• Not my plans, God's Plans
• Pump the first year if she can't nurse (I pumped 2 years, lol.)
• NO BEING SAD. ACCEPTANCE.

From here, I'm posting all of the things I posted on my October 1999 mom's board (The Best Mom's Ever, in case you were wondering - our nickname for ourselves.)   We have a very tight knit group of about 20 women who have been together since early in 1999 sharing stories and life with our now 10 year old kids. I shared a lot of feelings and things going on with them that very few people in the world knew other than my husband.  I went back this morning and pulled many of the relevant posts to Down syndrome, testing, and Miss Violette.

Pump Up the Prayers - January 4
and I may need to borrow the pink bubble for a few days, Kim...if you don't mind...

The Ultrascreen test came back with a 1 in 16 chance that the baby has downs. YUCK. Ok, enough of that. If the baby does have downs, I figure there are worse things (many, many) worse things that could have happened, so I'll deal with it. And, I'll try to deal with it joyfully. It will still be a beautiful baby (well, hopefully despite it's alien-like features), and just because it isn't "perfect" to the rest of the world won't mean anything to me.

I'm getting an Amnio on Tuesday at 10:00 a.m. to get a final verdict on this.

Factors that go into this stat are my age and Steve's age, as well as the blood work. My friend who is my OB was quick to point out that 15 of the babies who get this reading are fine. I asked her if she looked at the ultrasound pictures and thought "uh-oh" and she said, no, not at all, babies at 12 weeks just aren't that attractive in 3D.

So, the prayers I need are no downs, and if it is downs, that I (and all of us who love the baby) have the strength to deal with it gracefully.

I heard from the Doctor.
Jan 4, 2007

Not mine, but the one who administered the Ultrascreen test. Not sure I exactly feel better, but one thing that would make me feel worse he didn't say.

The Ultrascreen test has two parts. One is the Nuchal Translucency test, and one is the blood test. The Risk Factor is determined by a number of factors. Mother's age, Fathers age, blood test and Translucency test.

My translucency test was in the normal range, but high - 2.9 (http://www.babycentre.co.uk/pregnancy/antenatalhealth/scans/nuchalscan/) and my blood tests was good, though one was slightly low. So, I think the one slightly low reading, and the one slightly high combined with my advanced maternal age gave me this 1 in 16 reading. Everything else about the test (the freaky looking baby, etc.) looked normal for this age. The other thing that makes me feel good is the technician said that 2.9 was a normal reading - but she probably didn't realize I was 40. Oh, they also saw a nasal bone, which indicates no down...

My brother's 3rd little guy had a 6 on the NT test - WAY out of normal range. They (the doctors) thought for sure he'd have problems, but he turned out just fine.

I'm still going to go ahead with the amnio. I don't think I can stand NOT knowing if everything is right if I can know. I'm scheduled for Tuesday at 10:00 a.m. My girlfriend is doing the test. From what I've read, I should have the initial results on Thursday. My gut tells me everything is ok - and the tears I've cried every time I've seen an ultrasound of the baby tells me I'm going to love it no matter what.

Thank you all so much for your prayers. You have no idea how much I appreciate them!

Need an opinion about AB and amnio

« Thread Started on Jan 5, 2007, 4:16pm »

(that's Alien Baby for those of you who haven't read my most recent post).

I'm having second thoughts about the amnio. Here's my logic. They are going to wait till I'm 15 weeks along to do it. Odds are 1 in 16 the baby has Down Syndrome. My being 40 is one of the big factors. The neck thing was the biggest second factor, and it is within a "normal" range if you took the me being 40 out of the equation. Also, in reading stuff, DS babies are small for their age, and my baby is big for the gestational age, and in many babies the hands are stubby with a pinky finger that curves in, and my baby is all hands in almost every image we've seen of it.

I could instead wait 3 more weeks and do a level 2 ultrasound. That would look at all the markers for downs (I've got a bit more about that below). If the baby looks good on all the key markers I'm worried about (which is mainly it's heart which has been beating like a drum every time we've looked at it), I'll just proceed on. If any (or several) of the markers are there, I'll either assume the baby has Down Syndrome and move on, or have an amnio at that point.

You hear about perfectly healthy babies who die during amnio...not that there is any reason that that would be me, but there's no reason that my baby would have Down Syndrome either. And since terminating is out of the question for me, I'm thinking that I should be a big patient girl and wait for the level 2 ultrasound.

Any opinions one way or another???

Markers: Such indications of Down syndrome would be foreshortened thigh and upper arm bones, echogenic bowel, nuchal (or neck) thickening, kidney abnormalities, choroid plexus cysts and structural fetal abnormalities, such as a heart defect.

Later on January 5 - I don't know, we still call lilianne baby schmaby...Alien Baby has a nice ring to it. Of course, everyone will think I'm at terrible mother if I have a child with Down Syndrome and call it "Alien Baby", lol...but then again they just probably won't understand my sense of humor and know i was calling it that before i found out...lol...

Reply #9 on Jan 6, 2007, 12:47am

Here's my latest thinking on this subject:

I'm keeping the pregnancy...no desire to terminate. I feel pretty comfortable that we have the emotional and financial means to care for a child with special needs. In thinking about it, the chances are 93% that this baby is fine. I don't really care much for invasive practices, and if I did an amnio in a few weeks, I would be doing it for ME and MY peace of mind (and believe me, I don't have any problem with anyone who chooses an aminio). I guess my feelings are that my tests were ALMOST normal, but when they factor in my age, that jumps my odds (I asked the doctor what my results would have been if I were 30, and he didn't make a guess). It is so funny to me - I'm in much much much better health than I was 2 years ago when I had DD #2 (and I know that doesn't really impact my old lady eggs, but honestly, my overall health is excellent now). I've been eating right and exercising since March and lost 42 pounds in anticipation of getting pregnant. I wonder somewhat if that weight loss couldn't have screwed up the bloodwork a bit.

My other option is to wait 3 more weeks for the Level 2 ultrasound (at 18 weeks), and if that looks off, then I can still have the amnio after I do it. I'm getting no pressure at all to have the amnio - one of my dear friends is my OB, and she knows how I feel about all this and will 100% support whatever I decide. And I totally trust her to do the amnio - more than I trust almost anyone in the world (I've known her since she was 12 for goodness sake, lol, she's always been one of the most careful people I know!) I just don't like the idea of subjecting the baby to that if there is another way. I don't think any of these tests are perfect, and the good things that we saw (active baby, large for it's EDD, nasal bone, bladder, normal but high range for the nuchal fold test, "slightly" low on one of the blood tests) combined with the fact that DH and I won't terminate makes me think we ought to be more conservative and assume things are ok unless we see something wrong on the Level 2 ultrasound. Does that make sense?

I can't tell you all how much I appreciate your feedback. What on earth would we all do without each other???

Going to the Baby Doctor this morning.
« Thread Started on Jan 8, 2007, 10:28am »

As you guys know, she's also a good friend. I'm telling her to cancel the Amnio. I'm going to get her to schedule the level 2 ultrasound at 18 weeks. I hope she lets me see the little AB today and not just listen to it's heart beating...

Steve and I were joking around last night about Agamemnon Zeus (that's the working boy name, lol) I was on the couch burping for a change. We always laugh that the diet Pepsi I drank with Lilianne is what caused her to have so many curls on her head. Steve said he figured that the Diet Pepsi would cause a boy to have hair on his back. I told him, if my choices are birthing a boy baby with a hairy back and a sweet little girl with Down Syndrome I know one I'd want, lol. I always found the hair on my girls head felt sort of nasty coming out...the thought of a full hairy body is about enough to send me over the edge.

Needless to say, I think I'm at a much much better place about all of this. Still totally scary, but the optimist in me is at a very happy place. I'm really excited about the baby, totally at peace with the decision not to do the Amnio at this point, and know that I'll be ready for what ever comes my way.

Rant/Vent: Testing Results on PG Woman

« Thread Started on Jan 21, 2007, 8:40am

Ok, so as you can imagine, I've been watching the other moms boards keenly to see how testing issues have played out with other moms, and how they've responded to whatever results they are given...

Which brings me to the point of my post. I see people, like me FREAKING OUT about results, when really they haven't changed so much. For instance, a woman on one board was freaking out because her test showed a 1 in 217 chance for Down Syndrome. Her normal odds were 1 in 1000. So her odds went from 1 in 1000 to slightly less than 5 in 1000. But she's a wreck, and is considering having an amnio to find out, to "know."

In my case, I went from a 10 in 1000 chance for a 40 year old woman to a 63 in 1000 chance for a 40 year old woman.

I also don't think half the women understand that a positive screen means something different than a baby with a problem. That woman, if her baby turns out to be "normal" won't have had a "false positive" because no one ever said that her baby had anything wrong with it. They simply are saying that her screen is showing a tiny bit more of a sign that it has something wrong with it than the next 29 year old woman’s baby has.

But, these tests sure help the doctors and hospitals make more money, don't they?

And, I know too that the risks that there actually are problems are real, even for that 29 year old. But I think all in all it seems like they cause a lot more stress than anything. Even the amnio, the gold standard test can have false negatives...

Last thing...how many of us have known someone who has had an ultrasound, where they have been measured and told "based on your measurements, you'll have a 8 pound baby, and the baby comes out 6 pounds, or the other way? And they are telling me that my baby has higher odds for down syndrome because it's neck measurement was 2.9 mm

I'm in a very good place right now in terms of what ever happens with the baby is what was meant to be. And while I'm quite pleased that on my scan on the 20th, they will be really checking this child out, as I think about all this I'm more and more in an eye roll mode about how this plays out to all woman who bear children and do the testing. Particularly for those of us who aren't math people it seems like they need to come up with a really simple way to explain these numbers so you really feel like you are getting apples to apples (and I'm sorry I'm so dumb when it comes to math, but I am...I hear I go from 1 in 100 to 1 in 50, and I freak out a lot more than if I heard I went from 1 in 100 to 2 in 100).

Ok, I feel better getting that off my chest

Steve felt the baby kick!

« Thread Started on Feb 17, 2007, 1:13pm »

The baby is finally getting strong enough to occasionally be felt outside of my belly, and today, Steve felt it! He laughed and said the first of many times I'll have this child kick me!

My big ultrasound is Tuesday at 1. I'm actually pretty excited for it! A big day for sure. I know I could be wrong, but I really think this baby is developing and doing just the same things the other girls did.

My girlfriend/OB said that generally Down Syndrome babies aren't that active, and that the signs that the baby is strong and active are all good ones. This child sure seems like Lilianne so far...

Oh, name-wise I'm leaning toward Violette. I can't decide if the middle name should be Hope (the initials would be VHS which means something to all of us, but won't to her generation), June if that's when she's born, or Anne. Always open to suggestions, friends!

Prayers for us tomorrow, please
« Thread Started on Feb 19, 2007, 9:54pm »

Well, our big ultrasound is at one pm tomorrow.

I'm pretty much at ease about the whole thing, and Steve and I are really excited to see the baby. I know they'll go over her (or him, lol) with a fine tooth comb, so it will be fun to see the parts. I'm still thinking that everything is fine with the baby, and tend to trust my instincts more than that test. That said, the thought of a little person with any sort of terrible heart problem, etc. is a hard thing to even think about. I'll report in as soon as I can...

Missy

I'm back!!!

« Result #23 on Feb 20, 2007, 2:39pm »

EVERYTHING LOOKED GREAT!!!

Hooray!

They went over the baby with a fine toothed comb, and they found NOTHING that looked abnormal. He did schedule me for an Echocardiogram in 4 more weeks just to double check the heart - he said he didn't see anything abnormal, but they want to take one more look when the baby is a bit better developed.

Got a few pictures where it looks a bit less like an alien and more like a baby I'll post later. The girl doing the ultrasound must have given us about 15 pictures...she's so nice...

Baby's echocardiogram today...

« Result #22 on Mar 21, 2007, 3:57pm »

And everything measured out perfectly! I'll try to post some new scans of the baby later (it is much nicer looking now!)

Birth Story of Sorts...
« Result #88 on Jun 28, 2007, 7:46pm »

Hey gang...in crawling the walls I finally asked if there was computer access anywhere in the hospital, and I found one. Violet and Steve are snoozing in the room...

So, anyway, Monday night, like every other night for a while, I had a bunch of contractions. I said to Steve at about 8 p.m. that I thought I'd go upstairs and see if I could figure out how close they were. Well, at about 9:30 I still couldn't see any rhyme or reason, but thought I'd better pack my bag just in case. At 10 till 12, I said to Steve, let's call mom now - I'm not sure if this is it or not, but it will be easier to call her now. I was just going to go to the hospital to let them check me, but Steve insisted that in addition to that he should call my girlfriend who was going to deliver me. She talked to me and said, yes, I think you ought to get over there and I'll meet you there (she said she though "OH SHIT, I hope she gets there in time.) Mom came over, and I could hardly walk during contractions. Anyway, we headed to the hospital...got in and got to the desk. I had a ton of back labor. We got there around 12:20. They checked me in right away, and my friend showed up. Megan checked me and said "Well, I'd have to call this a good 8 cm. We better get you into the room. We got into the room, and they got cracking on the epidural. I started shaking, so I suspect that I had gotten into transition.

Anyway, then I got the epi and felt a lot better. Megan said she was going to go and catch a nap, that it would be an hour or two. She left, and the girls came about 5 minutes later and checked the machine. Sure enough, it didn't appear to be working and she couldn't find the baby. Well, she told her other nurse to check me, and sure enough, the baby was down in the birth canal. They told me to start pushing - I'm thinking WHAT? Anyway, I pushed two or 3 times (this was at about 2:10) and whoosh, out she came. Steve said "It's a GIRL!" And I said "I KNEW IT" Megan handed her to the nurses. And I immediately said "Is she ok Megan?" And she said she is perfect and beautiful, and I'm very sure she has Down Syndrome. I said "Oh Shoot", and then started calling to Steve, who was busy enjoying the baby and told him. He was so confused at first, I think...I don't think he really prepared himself at all that this could be a real possibility.

She nursed surprisingly well...even compared to Lilianne, I think.

I really was shocked, but what can you do other than be full of joy (and hope) when you see her beautiful little self. They got me stitched up (a few more then with Lilianne, but FAR less than Vivianne), and wheeled us to our room.

Well, we had a good first day. As I said the Gene dude from Children's Hospital was great with us, had very very nice things to say about Violet and how she is and what things she was doing...but realistic about what she is going to be all about.

But then the Jaundice started coming in. We expected that, but it has sure been dragging on. We'll be here again tonight (they checked me out but are letting me stay in the room, which is really nice...but then again they lost her blood last night and had to prick her heel again, and then thought they lost it again today. I was so upset...but they finally found it, and have been really great ever since.) We could go home with the blanket, but I think it is better that we stay cause the girls are WAY into her...

Michelle, that story was so very very nice to read...it really touched us. We have the same optimism for Violet. I think the part I'm most concerned about is the two other girls. I don't want Violet and her extra chromosome to prevent us from giving them the things that we want to give them...things like seeing the world are the things I worry about the most "giving up." I am trying really hard to focus on the hear and now and not the future, but things like only having 2 weddings to pay for instead of 3 also make me sad...

Haven't told Vivianne yet. In her eyes, as she said tonight "Violette is perfect." It makes me sad to think that the world doesn't agree with her (and me, and Steve), and that she will at some point in her life hear ignorant, stupid or rude comments about a person we all love. The good thing is I've told her that people always notice the differences in people (like that she is the biggest in her class) and that the differences are good. I'm still trying to decide when and how to tell her.

Children's Hospital in Cincinnati is OUTSTANDING and has a fantastic DS program. The Genetic MD (http://www.cincinnatichildrens.org/svc/find-professional/s/howard-saal.htm) said that they will make everything EASY for us when it comes to managing her health. They will tell us when and what to check for. Everything looks fatastic with her (I swear she is going to be the earliest of my kids to roll over). She seems like she has good muscle tone, she is very cute (looks like a tiny elf, but she's still not all fluffed up yet.) My brother and SIL came to the hospital and said that they did tell their kids that the baby has DS, and that they are around a number of DS kids at school (our school district is OUTSTANDING when it comes to special needs...talk about a blessing - of course I have to resolve some internal issues I have about where to send Lilianne now - keep her with Viv or put her in the public school with Violet) and that wasn't an issue at all for them. The two boys were far more irritated that the girls outnumbered the boys in the family now.

I'm actually feeling like we are going to have a wild ride at our household. I really feel like I've got two kids who are going to be at entirely different ends of the spectrum. Vivianne is so crazy smart in very odd ways that make her difficult, and Violet is going to have issues that will make her difficult in different ways. Lilianne is going to be the social flirt of the world.

I'm very proud of my husband. He's been so great. They took Violet to get blood (from her head!) to test her genetic make up. They wanted to give her sugar water in a pacifier, and he wouldn't let them...he didn't want to screw up our chances breastfeeding!!! I'm determined to give this one breastmilk as long as I can. As I said to Steve, those 4-8 IQ points that BM is said to help boost could be the difference between sorting mail and running the copier!!!!

I'm eager to get back into life at home again. I want to do what my brother and SIL have done, and make sure that her diagnosis is only one element of who she is and what our family is...not the THE element that defines us.

OK, should be off now...I'm certain I've forgotten tons and tons of things that I'll fill in later.

I SO appreciate how supportive you guys have been to me here. All your messages have been so loving and hopeful, and they mean the world to me. I'm certain I'll find some moments that I need to have some self pity here (maybe) and I know you'll probably be the only people who hear it and that you'll know what to say!

Smooch,
M

Violette's DS apt. today...

« Result #75 on Sept 4, 2007, 8:06pm »

Well, since August 2nd she has gone from 7 pounds 9 oz to 10 pounds even today! Little miss scrawny is becoming little miss fatso, thanks 100% to my pumped milk!

We saw a feeding specialist at the hospital today as part of an overall Down syndrome evaluation. They thought she was doing GREAT! The MD who has worked with DS kids in our area for 23 years also said she thought she looked like she was in EXCELLENT shape. I told Dr. Patterson that I've been feeling like the feeling that I had when I was pg with violette is still right - she's in perfect health. Her comment was that she believes mothers have it right 99% of the time, and she's sure I'm right.

She also said that when she started working she didn't believe there would ever be a medical treatment for the cognitive impairments that people with DS have. And she said that she can't believe the advances that have been seen in the last several years. Her feeling now is that in Violette's lifetime - in the next 5-10 years ever - there will be a treatment that will help her cognitive ability. Amazing.

Apparently in the community researching DS, the Doctors are pretty much split between parents of children or brothers and sisters of people with DS and regular old doctors.

BTW, thanks to all of you I really feel like I KNOW so much about DS. The books I ordered have been super - I'm feeling so in the know right now. I also ordered the CD's from the National DS Congress to listen to. They are really interesting - a lot of "self advocates" (adults with DS) give presentations - LONG presentations where they talk about their lives and accomplishments. It is really amazing.

I've also learned that using the word "retarded" out of an appropriate context is perceived by the disabled community akin to using the "N" word - one doesn't do it in polite conversation, one doesn't do it at all. Sharing because pre-Violette I probably violated that out of ignorance, and thought you might want to know and share with your children...this youtube clip is really amazing - long, but an amazing talk about why...

http://www.youtube.com/watch?v=CoqaNG0Ozqc

Fatso update...

« Result #72 on Sept 22, 2007, 9:11pm »

Weighed Miss Violette on the scale at work yesterday. She weighed 11 pounds 13 oz and is just shy of her 3 month mark. That's up from her 2 month mark when she was 9 pounds 6 oz.

At that weight, she is in the 50th% on the people scale, and 95th percentile on the Down syndrome chart!

I'm pumping about 100% for her...ugh. She and my mom and I went to Las Vegas and Denver last week for work. She was wonderful.