Wednesday, October 31, 2012

Happy Halloween!

Can't wait until next year when I get to do this with a 2.5 year old and 9 month old!

Monday, October 29, 2012

Failed Glucose Test

I took my one hour glucose test last Friday and got a phone call today saying my levels were slightly elevated. Boo! This means I have to go in and take a 3 hour test. I'm going to be stuck at the doctors office for 3-4 hours. Plus, I have to fast for 12 hours the night before, plus those 3-4 hours. I'm going to be starving! I really hope I don't fail again. I have no symptoms of Gestational Diabetes. I've only gained 13 lbs in 27 weeks. Ada is smaller, 16% at 25 weeks, but Brady was always small and I know she's likely to be even smaller than him. Wish me luck in my next test. I'm going to try and take it on Friday.

Sunday, October 28, 2012

Another Fall Weekend (and a look forward)

I've missed a couple of days, so here's been our wonderful fall weekend.

I went to see the OB on Friday for my glucose test and a normal check-up.  Yuck!  It went alright and I start going every 2 weeks now.  Plus, I'm officially up 13 lbs and she's pretty happy with that.  I just need to keep gaining.

Yesterday, we went to a local parade.  We went last year, but Brady was only about half a year old.  This time, he LOVED it!  He danced to the marching bands, loved looking at the cars drive by (he said "Cah" so many times), pointed obsessively at the balloons and bubbles, and got lots of candy and a sticker from a clown that was a big Tigers fan.  They even had guys in little cars that gave him high-fives as they drove by.  After that, we went to a 50s diner for lunch and he loved that too, especially the strawberry milkshake we all shared.

Our friends/neighbors were there with us and I got to see Kalista, who is almost 2 weeks old.  She makes me so excited for January and getting to dress Ada in all her girly clothes!  I'm looking forward to seeing Brady with his little sister and watching them grow up so close in age.  Brady and Kooper, who is 3.5 months older, play so well together now.  I can remember when they used to play separately, but they've been chasing each other and sharing toys for the past couple of months.  I look forward to seeing Ada do this with Kalista and all her other friends.  These are all things I know I will have with Ada too.  It may be a little different, but I don't feel like I'm giving anything up by having a daughter with Down Syndrome.  If anything, I'll be gaining something.  I'm not sure what yet, but I look forward to finding out.

Thursday, October 25, 2012

Another October Baby!!!

Another one of Brady's buddies became a big brother this morning.  Nicholas was born at 5 lbs 14 oz and 18.75"  Another early baby.  He wasn't due until Nov 3rd, I believe.  This means another friend for Ada!  It will be fun having playdates where every child has at least one other child close in age.  All these babies makes me wish January would hurry up and get here.  It seems so far away when there are so many holidays in between now and then, but at least it will go fast because of all those holidays.

Wednesday, October 24, 2012

Mini Breakdown

Nothing like trying to cook something new when your husband isn't home yet (he worked a little later today) and your 1.5 year old is super fussy and clingy to cause a mental breakdown.  I occasionally freak out about adding another child into this mix.  Sometimes it's hard enough doing it with one, that I am scared about how it will get done with two.  Hopefully, Brady will start to get a little more independent.  In his defense, he was pretty independent all day until I started trying to cook.  No amount of distraction worked either.  I put on his favorite movie. That lasted 5 minutes.  I pulled out a toy that I hide because it's annoying.  That also lasted only 5 minutes.  Even just being in the kitchen with me wasn't enough.  He wanted me to hold him.  So part of dinner did burn a little bit, but in the end it was successful.  It tasted good, at least, and we have tons of leftovers.  I guess I shouldn't freak out too much because no one was hurt, nothing caught on fire and we all still got fed (only 15 minutes later than usual, too).  Just a few tears shed by both Brady and me.  I'll just blame it all on pregnancy hormones.

In other news, I bought nutritional yeast flakes at the Vitamin store nearby and put some of that in our potato cheese soup.  Obviously, we aren't vegans since I definitely used cheese in the soup and half & half, but I got it for a vegan recipe I plan to try.  Plus, I read that it can really boost the nutritional value of your food and it came in a huge container (way more than I need for one recipe).  Either it didn't have enough flavor to overpower the rest of the meal or it just tastes good, but dinner was a huge hit, especially with Brady.  He always makes me feel like a great cook.

Monday, October 22, 2012

To Buddy Walk or not to Buddy Walk?

I've been back and forth on this.  At first, I really wanted to go.  Mainly to get information.  I figured there would be lots of information and there probably is.  However, now I'm starting to feel less excited to go because (a) it doesn't look like the Early Intervention program will be out there and (b) I'm not sure if I'm ready just yet.  Well, I do feel ready, but I feel kind of weird about going without Ada there.  I think in the future the main point will be for it to be a fun event for her to meet other children in the Down syndrome community in our area.

Another reason I'm weary of going is just exhaustion.  It's fall here and fall means weekends packed with things.  We have not had a weekend or even one day on the weekend free all month and I don't think we have any weekends free until after Thanksgiving.  I'm sure December weekends will start filling up too.  I have a long doctor's appointment (doing the standard Gestational Diabetes test) this Friday.  This Saturday, we are planning to go to a local parade and maybe our neighborhood's Night Out.  The buddy walk is this Sunday.  I get so tired after these weekends and it takes almost the whole next week for me to recover.  That's one of the joys of being pregnant and also of it still being so hot here.  I really hope the heat wave breaks before November.

Feel free to offer me advice, especially if you went to a Buddy Walk during your pregnancy.

Saturday, October 20, 2012

Still Hot!

Man, at this rate I'll be lucky to get 21 for 21, but 21 is a pretty good number anyway.

We didn't even do anything that exciting yesterday.  I just forgot to blog.  I did go to Michael's to get some supplies for my next big craft project.  I'm going to make Kalista a nameplate/hairbow board.  If it goes well, then I'll make one for Ada too.  All the supplies are ready; I just need the motivation to actually start the project.  I still have a lot of scrapbooking to do for Brady's scrapbook, also.

I wish it would just cool off down here.  It's been a high of 90s all week.  We went to a pumpkin patch today and that was fun, but still too hot!  Brady loves being outside and that's when he's on his best behavior.  Pictures!!!

Farmer Brady!

I guess this is Happy Brady!

Sweet Brady (giving the pumpkin kisses)!

Thursday, October 18, 2012

Our Mannerisms and Our Kids

Funny how there are many times that I don't realize I do something until I see Brady do it.  Last night, we were getting him ready for bed and he was getting kind of giggly.  I also do this, but I'm aware of that one.  He starts laughing and he puts his hand over his mouth.  It cracked me up so much that I started laughing and, you guessed it, put my hand over my mouth by instinct.  When I realized that he must have picked it up from me I started laughing harder.  We were all cracking up and I really wish I had caught that moment on camera.

Brady is at the mimicking stage big time.  He loves to blow on his food, including goldfish or cheerios, to cool it off.  He loves mimicking the motions in signing time or at least trying to mimick them.  It's so cute to see him do so many silly things.  He's developing such a cute and sweet little personality.  He loves shoes and hats (or things that resembles a hat).  Beware leaving shoes out around him because he will put them on, mostly my flip flops.

Today, we went to visit his buddy, Kooper, and little sister, Kalista.  I was getting Brady ready to head out and he insisted on wearing this "hat."  He wore it the whole walk over (two doors down), but took it off as soon as we rang the doorbell.  I still caught a picture of him and his "hat."  Sorry that it's blurry and he sneezed right as I took it.

Also, here's just another shot of him being silly and flexible.  Sometimes on car trips, he likes to put his foot in his mouth.

Wednesday, October 17, 2012

Comparing Milestones Will Always be a Temptation

Sometimes it is nice just to get out of the house.  Although, I always feel like it's a bit at Brady's expense.  I decided to skip his first nap today and take him to a play class in our area.  Brady was actually one of the older ones because the group has age ranges from 12-18 months.  He was probably pretty tired, but woke up a lot with all the running, jumping, crawling, and dancing.  I always chuckle a bit to myself when people marvel at how well he is doing.  "Wow!  He walks so well and runs so well!"  "Wow, he really knows how to bounce on a trampoline!"  I think they assume he is several months younger than he actually is and hasn't been walking long.  He actually started walking on Easter when he was not quite 11 months old, so he's had over half a year of practice now.  Now, he's getting good at climbing too, which he demonstrated at the library after class.  He climbed all over the chairs and couches and then finally settled down enough to pick out a book.  First time he got to pick out his own book!

All this thinking gets me wanting to talk about comparing milestones.  Plus, it's the optional prompt for blog hop this weekend, so it's good timing anyway.

I know it will be hard not to compare Ada to Brady.  Fortunately, I was a bad mommy when it came to keeping track of exactly when Brady did everything.  I only remember the walking specifically because it was Easter and all of our friends (and my camera) were there to see it.  I did keep track of a few things in a little board book for him, but I didn't do anything extra.  As parents, I think it's always hard not compare our children to other children.  This is the case with any child.  I just hope that I won't let it stress me out too much because we will definitely be surrounded by many other babies Ada's age.  Kalista was just born, another friend is on baby watch as we speak, one is due 2 weeks before I am, one due in March, and just found out there is another one due in May.  I'm sure there are more, but this is in my immediate group of friends.  All but one of these women have toddlers near Brady's age, so we like to have them all together I guess.

There will always be the comparing in the back of my mind, even now.  It's amazing to see how different they all can be.  Brady focused a lot on the motor skills and he just recently started talking.  He still mostly babbles, but he has a few key words.  He signs more than he talks, though.  He loves watching Baby Signing Time!  One of his buddies just started walking at 18 months old, but she can talk up a storm!  In the end, there is just no point in comparing.

I feel like we're due for a picture:

Tuesday, October 16, 2012

Doctors, Nurses, and Such...

Hooray for no need to search for a new pediatrician.  I spoke with Brady's yesterday and he was very knowledgeable about Down Syndrome, about Early Intervention, what tests would be necessary, what specialists would be necessary, and it was the best conversation I've ever had with him.  We don't usually chat much because we really haven't had much to chat about.  Brady has really only been to see him for normal appointments and a couple of extra things, mostly paranoid mommy things.  I'm happy to get to stay with him because I feel like he is very down to earth.  This is important because he has not been concerned about Brady's size at all.  He says he is growing, just on his own chart mostly (he's actually in 1% on the growth chart, but he fell below in height at one point).  He acknowledges that Brady is just going to be smaller, naturally, because his parents are small people too.

I'm also happy with the pediatric cardiologist we saw at Ada's fetal echo.  Not that I would actually want to see him a lot, but he still seemed great.  I was not so happy with the nurse (or ultrasound tech) who performed Ada's fetal echo.  She performed our level II ultrasound at 18 weeks, which was just after we got Ada's diagnosis, and was very reassuring.  This last time, she waited until all the doctors left (there were three) and told us that one measurement was slightly large.  One or both (I can't remember for certain) of her brain ventricles measured 11mm.  The limit for "normal" is 10mm.  I asked the nurse what this meant and she stated, "Well, she's not going to go to Harvard." Yes, she said that.  I then asked her what it meant about Ada's health because that's what I really wanted to know and she said that it's just a measurement.  I did look it up later and, as it turns out, it's just a possible marker for chromosomal abnormalities and doesn't always or even often mean anything.  Apparently, about 20% of "typical" babies with this "issue" will have a mild developmental delay. Usually it will resolve itself.  Really, I don't know how she can predict on an ultrasound if my daughter will go to Harvard or not.  Also, most people don't go to Harvard.  Anyway, just wanted to vent about that a bit.

Monday, October 15, 2012

Going Green

I've been cloth diapering Brady for awhile now, except for my mini-hiatus during my nauseous part of pregnancy.  Now it's become my latest obsession.  Not just cloth diapering, but just cloth anything.  It's getting expensive, but I know it will pay out in the end.

I'm finally taking a break from buying Ada a stash of newborn cloth diapers and we already have a sizable collection of one size diapers for when she's hits 10-12 lbs and can start wearing those.  Here's a picture of what I have for Ada's newborn diapers so far.

You can't see everything in this picture and I actually do have a few more items on the way.  I think I'm at around 12 All-In-One/Pocket Diapers, 2 fitted diapers, 5 contours, 3 diaper covers, and I have 10 prefolds on the way.  I will need more diaper covers and a few more prefolds, but I'll worry about that later.  We'll definitely be set after that.  Plus, more cloth wipes because I just started using cloth wipes on Brady too.  They're super easy because we already use the diapers and they all get washed together.  Most of these items I've gotten used or discounted new, so I've saved a lot of money.  I figure I'll get 3-4 months of use out of all the newborn stuff.

Anyway, I'm also starting to green up our kitchen.  I've bought some handmade unpaper towels (still to be delivered), some reusable bags to replace our plastic sandwich/snack bags, and some flour sack towels that are supposed to be great for cleaning up any big spills.

I'm pretty obsessed with it.  I think it's nice because it's not only saving us money, but it's good for the environment too.  I'm also big into buying used lately, for the same reasons.  Used toys, used furniture, used etc.  This new world of being able to shop local yard sales on facebook is making it almost too easy, so... maybe I'm not really saving money because I keep wanting to spend when you can window shop from your computer.  I keep telling myself, I'm done, but we're also prepping Brady's toddler room.  At least I know I was going to buy a toy box and stuff anyway.

Sunday, October 14, 2012

Ada's Future Best Friend

Today, Ada's future best friend was born.  She was born at 4:42am this morning and was 4 weeks early.  The reason I call her Ada's future best friend is because we are close friends and neighbors with her parents. Plus, their son is 3.5 months older than Brady and they're best friends because we go over there to play a lot.  She is beautiful and it's so exciting to hold a tiny (she's 5 lbs 12 oz) newborn again!  I am very excited for January when I can hold my own baby girl!

I feel like I'm not talking a lot about down syndrome and this is Down Syndrome Awareness Month, but, honestly, it's not in my mind a lot anymore.  Maybe it will be a little rough when Ada gets here, but I doubt it.  I'm nothing, but excited to meet her!  My only concerns are that she will be in the NICU or something will go wrong during birth, but those are normal concerns.

I am going to prepare some questions for our pediatrician.  I'm taking Brady to an appointment tomorrow and figured I would see if he's the right pediatrician to keep once Ada is born.  He's not always the easiest to talk to and get information from, but we've never had any issues with Brady and I haven't had a lot of questions or needed a lot of information.  I'm sure I will when Ada is here, but I also know we'll be seeing lots of specialists and therapists who will have answers for us.

Saturday, October 13, 2012

Fall in Southern AZ

Well, another day of nice weather.  I told Brian that we should do something outside in between Brady's naps.  He suggests a hike, so we busted out the Kelty and enjoyed our first fall hike.

Later, we went to a birthday party and Brady got to enjoy his first bounce house experience.  He had a lot of fun.  All the kids were under the age of 4, so he was safe and got to bounce a lot.  Hoping the weather stays cool enough to enjoy many more hikes and days outdoors.

Friday, October 12, 2012

Zoo Trip!

Finally, we're using our zoo membership again.  We bought it back in April for Brady's birthday.  Just a membership for me, actually, because Brady gets in free.  We only used it 4-5 times in April and May, then it was too hot.  Today, the high dropped below 90!  It was actually around 77.  I took Brady to the zoo and he is so much more interested now than he was 5 months ago!  He loved the elephants, giraffes, and all the peacocks/peahens (those are loose all over the zoo).  I did find that 1-1.5 hours is definitely a limit for a toddler being interested in the zoo.  Hopefully this weather will come back soon because the forecast for all next week is 90+ again and even 70s was getting kind of hot for us.

After that, we went to ToysRUs for a couple of birthday presents for his friends.  There are so many October birthdays!  He had fun because I took him out of the cart and let him play with the train tables. I figured we should take our time because he was going to fall asleep on the way home no matter when we headed back home.  He can't stay awake in the car for more than 15 minutes and it's 45 minutes home.  All in all, a wonderful day out of the house.

In other news, I recently found and that's bad news.  Last night I bought some cute jeans that are supposed to be very adjustable, so they will fit over cloth diapers and they will last almost a year!  Plus, they're cute.  Today, they had a deal on Petunia Pickle Bottom.  I was considering they're backpack diaper bag for awhile, but couldn't justify spending that much.  At half off, however, I jumped on it super fast.  Hey, I need organization when I have two in diapers and need multiple sippy cups/bottles.  I'll take lots of pictures when everything gets here!

Wednesday, October 10, 2012

Fetal Echocardiogram

We had a fetal echocardiogram today. Everything is looking good with Ada's heart and she's perfectly healthy. She weighed in at 1 lb 6 oz, which I think is pretty good. I did get lectured by the nurse about my weight and size. I'm not worried though and neither is my OB, yet. I gained slow during the first half of my pregnancy with Brady too and I still ended up gaining almost 25 lbs total. I'm at 9-10 lbs with Ada and I'm measuring on track. I'll let my regular OB worry about my weight and size. Just super happy that everything is looking good. They want to do another one in 6 weeks, but everyone says that anything major would have shown up by this point.

Tuesday, October 9, 2012

Prenatal Testing

Oops, I missed yesterday.  I figured it would happen eventually.

I wanted to make a post about prenatal testing.  I always feel frustrated when I see so many misconceptions about prenatal testing.  Here are just a few I would like to address:

  • "I would never get the prenatal tests because I would keep my baby either way." - This implies that the only reason to get prenatal testing is because you would consider ending the pregnancy.  This may be one reason, but I think most people just want to know whatever they can about their baby in advance.  Just think about how many people find out the gender before the baby is born now.  I also think most people, myself included, took the test just assuming it was more like a check box in their pregnancy.  I always thought "why not?" and didn't think I would get a phone call saying my baby was at higher risk.  I do see benefits to knowing now rather than at birth.  I'm a planner and I've done tons of reading and research.  I feel like I'm now able to enjoy my pregnancy without any doubts about whether she has T21 or not looming over my head.  I'm also considering switching to a hospital with a higher level NICU, but that all depends on if we see anything at our fetal echocardiogram tomorrow.

  • "There are too many false positives with those tests." - I'm blaming this one on doctors and nurses actually, but the screening tests should not be told as a "positive" or "negative" result.  They are "normal" or "abnormal" and have a risk factor.  I was told a 1:93 chance of having a baby with T21.  My daughter was the 1, but about 92 other women would get the same result and their child would probably not have T21.  That's how statistics work.

  • "You shouldn't worry if your baby has Down Syndrome because all people with Down Syndrome are always happy and healthy." - This one is a misconception for two reasons.  First, T21 is a condition that includes a higher likelihood for health issues including heart problems, bowel obstructions, hearing/sight impairment, among other problems.  Not every person with T21 is completely healthy, but most health issues are easily fixed with surgery or treatment.  That being said, not every baby is born healthy either, but I do still worry that Ada will have a heart problem.  Mainly because I don't want my newborn to go through surgery and I'm pretty sure no one would.  There are health risks with any person or child.  No one is completely healthy all the time, but it's natural for a parent to be concerned about their child's health.  Also, these screening test also check for risk factors associated with Trisomy 18 and Trisomy 13, which commonly have major health issues associated with the condition.  The other reason this statement is wrong is because people with Down Syndrome have the same array of emotions as any 'typical' person.  They can be happy, sad, angry, excited, frustrated, and any of these emotions.  
  I am going to end by saying that these prenatal tests do come with stress.  Women get stressed when their results come back as 1 in 250.  1 in 250 is not a great chance and there is still a chance even when you're told less than 1 in 10,000.  It's all just statistics and there will always be those that fall out of the norm.  In the end, it kind of means nothing.  It's a personal decision if you want to take these tests or not.  Personally, I would do it all over again.  I like being prepared.  I also love this billboard from IDSC for Life and Changing the Face of Beauty.

That is why you shouldn't worry about having a child with Down Syndrome, but, of course, you're going to worry whether your child has a genetic condition or not because it's one thing a mom is pretty good at.

Sunday, October 7, 2012


All the blogs I've been reading for 31 for 21 are very encouraging to me.  Like with any child, it seems to me that just a bit of good parenting is really all you need to help a child with Down syndrome reach their full potential and find happiness.  Although I feel weird saying full potential because I'm not so sure anyone has reached their "full potential" and I'm not sure what I even refer to when I say potential.  I think for me, "full potential" just means being motivated and doing things that make you feel proud and fulfilled.  That's all I can really ask for my children.  I want them to be happy, fulfilled, and proud of their accomplishments.

A few of the blogs I've been reading have older girls (because I found that I picked all blogs with girls, go figure) that are teenagers or young adults.  These blogs are inspirational because I find that they are accepted for who they are and are doing exactly what every person in that age range does.  They are searching for what makes them happy and accomplished.  From reading a little more, I find that it's the parents that are motivating their daughters, but not trying to force or change their daughters.  I think that's the way it should be done.

Really, I'm starting to realize more and more that it doesn't seem too very different than just parenting any child.  Sure, there are challenges and, sure, there are times when you worry about their futures or worry that you're making mistakes.  That's just the way it seems to go.  Honestly, being a parent is the scariest thing I've ever experienced.  I'm still new to this.  Maybe it gets easier, but I've been told by parents of older children that you never really stop worrying about them.

I'm going to throw this link in here too.

Ten Things I Learned About Down Syndrome - I'm linking you directly to #6 because it relates to the post, but read all of them.  It's titled "Every Child Has Special Needs."  My favorite line is "we celebrate every babies' milestones and we support our children when they need extra help."

Saturday, October 6, 2012

Another Busy Day

Sorry if this post is also super short, but today was busy too.  Took Brian's car to get a tire replaced, got my haircut, and picked up a gift for a friend's first birthday.  I barely made it home before we had to head to the party.  The party was lots of fun and Brady got to play with lots of babies and toddlers around his age.  Tonight, we're off to celebrate our anniversary at the Melting Pot.  YUM!  Our anniversary is actually Wednesday, but that also happens to be the same day as our fetal echocardiogram. We weren't sure if we'd be feeling up to going out afterwards, but we're hoping for good news. Plus, weekdays are usually kind of busy (for Brian at least).

I'm currently thinking a lot about which hospital I would prefer for delivery.  We delivered Brady at a great hospital and I liked it, but the hospital only has a Level II NICU.  After getting Ada's diagnosis, we wanted to deliver at the best hospital possible.  My doctor only delivers at two hospitals.  The other hospital does have a Level III NICU and is known to have a very good cardiology team also.  This is where we are getting our fetal echo because we will also meet with the pediatric cardiologist.  It seems nice, but I'm not sure how I feel about the possibility of sharing a postpartum room with someone, which could happen at this hospital.  I've also heard that they're more likely to take the baby to the nursery, although I'm sure they will do their best to accommodate our wishes to keep Ada with us.  This just makes me worry how much control we will have over birth and whether I'll be able to have another natural childbirth if I have unsupportive staff.  I'm thinking I might just stick with our original hospital, but this all depends on how things go at our appointment on Wednesday.

I submitted my blog post "Where It Starts" to the blog hop.  The optional prompt is "a defining moment" and I feel like that blog defines a very defining moment or moments in our life.  If you are also participating in the 31 for 21 blogging marathon, then you can select your favorite post from the week and hop on.

Friday, October 5, 2012


This is going to be a short post about my day.  I had a dentist appointment, came home for lunch with Brian and Brady, went shopping to get something for a friend's baby shower, and then went to my routine OB appointment.  I showed up there about 20 min early because my shopping didn't take as long as I expected. The doctor was running 45 minutes behind and then ended up heading to the hospital to deliver a baby just before my appointment.  I ended up spending over 2 hours at the doctor just to be measured and hear the heartbeat.  It's nice to hear the heartbeat, of course, but Ada is so active that I've never had a reason to worry about her.  Made it home just in time for dinner and an evening walk.  Now, I'm exhausted!  I'm off to bed at 8:30pm.  I guess that's pregnancy and motherhood.  I hope to make a better post tomorrow, but we'll see.  Grocery shopping and a birthday party tomorrow.

Thursday, October 4, 2012

Touching Story About a Dad

Today, I'm just stealing from someone else's post.  I saw this on a blog yesterday and found it very sweet and touching.

Also, time to post some more pictures of Brady.  Here's a sequence of him brushing his teeth.

Wednesday, October 3, 2012

Just an Average Day

Today has been pretty average.  Maybe a little busier than usual, but right now Brady is down for a nap (at least we'll see if he stops talking to himself soon), dinner is cooking in the crockpot, zucchini chips are baking in the oven, and the dishwasher is almost ready to be unloaded.  This means I have a few minutes to blog.

Today, I'm thinking about "normal" and "average" a bit.  It was something that worried me at first.  Will our life ever be easy and normal once Ada is here?  Will we have average days like this?  These were some of my concerns until I met a family that our genetics counselor connected us with.  They live in our area and have a 5 year old son and a daughter who is a few months older than Brady.  She also has Down syndrome.  We actually spent some time with her and her mom today at the local library storytime.  In so many ways, she and her family have shown me that Down syndrome is not in the forefront of their life.  She is just like a "typical" toddler.  Yes, she has extra therapy and doctors appointments, but every day for their family seems to be very similar to what every day is for us.  Spending time with her and her family has really helped us out a lot.  Plus, now we have more friends in the area with children the same age as ours.  Did I mention her mom is due with her third one month after Ada is due?

I've decided I will devote some time this month to reading other blogs for 31 for 21.  I obviously don't have time to read them all because there are over 150 last I saw.  I (somewhat) randomly selected 8 of these blogs and figure I will read at least these blogs throughout this month.  I'm going to create a list on the side of the blogs I selected to read.  It truly helps to read others blogs and feel like I can know (at least a little bit) about what I may be expecting in our future.  I also have added my favorite links to the side bar.  These links are blogs and other resources that I found helpful in the few weeks after my prenatal diagnosis and continue to find helpful now.

Tuesday, October 2, 2012

Where It Starts

I suppose a good place to start would be our diagnosis story.  It's going to start with all the testing we did to get our diagnosis, which is pretty long and detailed so feel free to skip to after we found out our results if you want.

Genetic Screening/Testing

With Brady, we had the first trimester genetic screening. Our risk factor came back as less than than 1 in 10,000 for all three trisomies (13, 18, and 21) and we never really thought of it again.  Honestly, we're the type of people that just like to know all the information we can.  It must come from being engineers and science-types.  We got the same screening this time around.  The screening consists of an ultrasound to measure the nuchal translucency (NT), which is fluid on the back of the baby's neck, and a blood test to measure HCG (pregnancy hormone) and PAPP-A (a protein) levels.  I remember with Brady that his NT measurement was pretty small and hard for the doctor to measure.  This was the same with Ada, so I wasn't really worried.

Three days later, I got a phone call and I was instantly worried.  They didn't call me with Brady, we just went to the next appointment and they told us the results.  The nurse told me that our risk factor came back abnormal and the risk level for T21 was 1 in 93.  I like that the nurse did not say positive because so many women are told positive and this is NOT a positive or negative test.  The words positive has such a definitive meaning.  I still freaked out.  Brian calmed me down by telling me that that's still over a 98% chance of having a baby without Down syndrome, but even then I just had a feeling.  In a way, I just knew, but I wrote it off as being hormonal.

We went to the genetics counselor and she told us our options.  We had already done tons of research and we were pretty set on getting the MaterniT21 test.  Besides, I was not even 13 weeks at this point and wouldn't be able to do any other testing for at least 3 weeks.  We wanted news faster than that.  We did schedule the Level II ultrasound and the amniocentesis anyway.  Then there was the waiting.  After 8 business days, I had to call.  Apparently, the first vial had too much fetal DNA and they had to run the second vial.  On day 10, the genetics counselor called and said the second vial came back "failed." Something about not enough blood in the vial, which doesn't make sense to me.  My test was inconclusive and they would have to redraw blood.  At this point, my amnio was scheduled for one week away.  We decided we didn't want to wait 2 more weeks to hear another "inconclusive" and then have to wait 2 more weeks for the amnio results.  We were at least able to get a refund for our MaterniT21 test.

At 15.5 weeks, we went in for the amnio.  We had an ultrasound before and there were no markers, but the genetics counselor did tell us that a lot of the markers may not show up until around 18 weeks.  The amnio was a little scary, but didn't hurt more than a normal blood draw to me and didn't leave anything except a small dot on my abdomen.  Blood draws usually leave some pretty nasty bruises on me.  Now, time for more waiting.  It was actually just about to come on the second weekend (9 days) and I called the genetics counselor to see if we were going to hear news before the weekend.

The Results

I was just barely 17 weeks and my OB, who is at a different office than where all our testing was performed, called me back rather than the genetics counselor, who I was expecting to call back.  She told us that we're having a girl and that she has Trisomy 21.  She gave me her cell phone number and the genetics counselor's cell number too.  It was 4pm on a Friday.  Brian called me just as I got off the phone and I shouldn't have answered, but I did.  I burst out crying the second I said "hello."  Poor guy had to drive all the way home after just hearing the news.

I started researching, reading.  I was actually less concerned about the younger stages and mostly concerned about adulthood.  I focused on stories about the adults.  I'm going to be honest and say that I was very scared.  Most of the stories talked about adults who had been in and out of hospitals as a child and parents who never knew if their children would live through each hospitalization.  I had to ask myself if I wanted that for my family.  Could I do that to Brady? He's so young and I had to think about his future too.  We spoke with the genetics counselor again and we were told all our options.  To us, none of them sounded so great.  You may disagree with this, but I'm going to be completely honest again and tell you that we truly did consider all of our options.  To us, it was the responsible thing to do. I want to note that we did plan this pregnancy.  Although, we weren't quite expecting it to happen so fast, we wanted another baby and we wanted our children to be close in age.

We couldn't decide.  It was too hard.  I continued reading stories.  I started reading stories about children now.  I realized that these children are not in and out of the hospital and are not fighting to live every second of every day.  They are living!  They are happy and they are healthy.  Sure, they may have needed heart surgery as a baby and may need therapists to come and help them out, but it was nothing compared to the stories that played out in my head.  Most of these children were not going to the hospital every couple of months.  I was confused on how it could be so different.  I read more and realized how much help there is out there now.  Medical advances, Early Childhood Intervention programs, extra doctors visits meant they could fix any problems before they really became problems.  Everywhere I looked I saw stories of ACCEPTANCE, HAPPINESS, and PRIDE.  I started to feel happy and normal again.  I learned to accept the diagnosis and to be happy and proud.  It was no sudden turning point.  It was just a gradual process over 3-4 weeks.  Maybe it did help a little that my nausea had gone away, but most of it was all the stories I read.  Do you know what turned everything around for me?


All of you out there blogging about your babies and children with Down syndrome, THANK YOU!  I read a lot, lot, lot of blogs.  I told Brian everything I read and he liked what he was hearing too.  One day I will have to start putting links up of my favorite blogs, but for now I will just remind everyone about 31 for 21.  This is my second post for 31 for 21 and I really hope that maybe my story can one day help someone get to where I am.  I still have hard days and I still get scared about the future, but isn't that just a normal part of parenting?  Yes, I think it is. Mostly, I'm excited.  I can't wait to hold my little girl in my arms.  I can't wait to introduce her to her family.

I wanted to end my post with a picture of my 16 mo, Brady, feeding himself his yogurt this morning and an ultrasound of Ada at 20 weeks.

Monday, October 1, 2012

Awareness Month - October

Until this point, for me, October has always been Breast Cancer Awareness month.  This is because my sister became a breast cancer survivor when she was 12 years old.  I was only 7 years old at the time and I honestly don't remember a lot about that time frame.  I do know that it has always been something major in my sister's life and it has shaped her into the wonderful woman, sister, friend, mother, and wife that she is today.

Little did I know that October would become such a special month for me too.  October also happens to be Down Syndrome Awareness month and a couple of months ago, we found out that our daughter, due in January, has Down syndrome.  I've been thinking about starting a blog to document our journey for awhile now, but figured I wouldn't start it until next year.  However, I've decided to participate in 31 for 21, which is a blog challenge to create a blog post every day in the month of October for Trisomy 21 in honor of Down Syndrome Awareness Month.  The posts don't have to be Down syndrome related, but I'll try to post a little bit of info about Down Syndrome when I can. So... we'll see how this goes...