Enriched

I was reading about Trisomy 18 (Edwards Syndrome) on Wikipedia and came across this under the heading prognosis:

In 2008/2009, there were 495 diagnoses of Edwards syndrome (Trisomy 18) in England and Wales, 92% of which were made prenatally. There were 339 abortions, 49 stillbirths/miscarriages/fetal deaths, 72 unknown outcomes, and 35 live births. Because approximately 3% of cases with unknown outcomes are likely to result in a live birth, the total number of live births is estimated to be 37 (2008/09 data are provisional).

Major causes of death include apnea and heart abnormalities. It is impossible to predict an exact prognosis during pregnancy or the neonatal period. Half of infants with this condition do not survive beyond the first week of life. The median lifespan is 5–15 days. About 8% of infants survive longer than 1 year. One percent of children live to age 10, typically in less severe cases of the mosaic Edwards syndrome. (edited by Beth:  our little one, unfortunately, does not have mosaic Edwards syndrome.)

Parents with surviving children who take part in support groups report that these children enriched their family and their couple irrespective of the length of their lives.

I already knew the prognosis - that our baby will most likely be stillborn and if she's not, she will most likely live only a few days.  But what struck me as I was reading this was that of the 495 babies in the study that were diagnosed with Trisomy 18, 339 of them were killed through abortion!

What a sad and sobering  statistic.  Because that last sentence in the article stated that every single person in a support group reported that their baby enriched their lives no matter how long they lived!

And just in case you were curious, enriched means:

1. To make rich or richer.

2. To make fuller, more meaningful, or more rewarding.

3. To add fertilizer to.

4. To add nutrients to

5. To add to the beauty or character of; adorn.

And I can tell you right now, this baby has already enriched us even though we have yet to meet her.  Because of her, we have hundreds (or maybe more) people praying for her healing and praying for our peace and comfort!

We don't deserve all of that love and support but we are receiving it anyway and it is all because of our sweet little one.  And if that's not making us richer, making us fuller, making our lives more rewarding, helping us grow or adding to the beauty of our lives - then I don't know what will!

Teacher's Gift Idea for the Busy Room Mom

I am the room parent in Sarah's 4th grade class this year.  I wanted to come up with something cute for Sarah's teacher but I also wanted it to be something useful. (And I didn't have a lot of time to spend putting something together.)

I was an assistant preschool teacher for one year and  realized that year that gift cards are the way to a teacher's heart.  And I've spoken to lots of teachers on this and they all agree.

So I emailed all the parents in the class and told them my plan to make a gift card tree and asked that who ever wanted to participate to send in a gift card (of any amount) and I would take care of the rest.  I asked Sarah's teacher about some of her favorite stores and emailed that to the parents as well.

Sarah's class only has 17 kids in it and a few of them wanted to give their own gifts so they didn't participate in the tree.  (And that was okay.  I just presented the tree to the teacher as a gift from the entire class.)

All in all our little gift card tree had 13 gift cards on it to Barnes and Noble, Starbucks and Panera and the cards ranged in value from $5, $10, $15 and $25.

I think it turned out pretty cute:

(Although, one of the kids did ask me if it was a Charlie Brown Christmas tree!)

I got the tiny tree and the tiny ornament balls from Target.  I got the tiny clothes pins from Michael and I made the star out of construction paper and glued it to one of the clothes pins. 

It may be too late for you to use this idea this year but you can always pin it for next year.  And be on the lookout for sales on tiny trees right after Christmas.  I think I'm going to try to see if I can find one on sale for next year!

Seven Quick Takes

It's been a couple of weeks since I did a Quick Takes.  Let's see if I can come up with seven.

--1--

If you missed yesterday's  update on the baby, please click over.  And let me know if you can see Jesus in her ultrasound picture!

--2--

Peter's in the 5th grade and still wants to believe in Santa.  He will occassionaly tell me that he's worried that Santa isn't real and he asks me if he is or not.  I then use my old standby reply, "Well, what do you think?"  And he usually says, "I think he's real," and goes happily on his way.

I do almost 100% of the kid's Christmas shopping on Amazon and have it delivered to Massachusetts so we don't have to hide it on the trip up. Getting it all home is hard enough but having to hide everything on the way up would be a nightmare.

Peter is on the computer a lot.  One aftenoon, he came running out of the office shouting, "I just saw an email from Amazon that said your order for Guitar Hero just shipped!"  (And yes, I am just now getting around to getting him Guitar Hero.  He's got three real guitars so I figured why would he need to play it on the Wii...)  

I froze in fear and then sprinted into the office, closed my email and said, "I have no idea what that means." And then I made a hasty retreat from the office.

--3--

A couple of minutes later Peter came out of the office and we had our usual is Santa real conversation.  He ended it with, "I think he's real," and went happily on his way.

A minute later he came out of the office and said, "Mom, if Santa's not real, then could you just stop buying everything from Amazon?  I can see everything you buy and look at on their pop-up ads on other websites!"

Once again, he went happily on his way and I stood there dumbfounded with my mouth hanging open a bit.  So, I guess now he knows for sure!

--4--

Sarah, on the other hand, is still a firm believer in all things Santa, Elf, Fairy, Bunny, etc.  She especially gets very excited to see what Sparkle, our Elf has been up to each morning when she comes down for breakfast.  

I am typically the one in charge of moving him and let me just say that I stick to a very literal Elf on the Shelf.  I am not into those creative antics that I see other people posting on Facebook and Pinterest.  Typically once a year Sparkle will do something wild (last year he toilet papered the mantle) but typically he likes to just move from shelf to shelf.

But this year, Dan has taken over and we've found Sparkle sitting in the candy bowl eating a lolly pop, hiding in a potted plant, hanging on the Advent Calendar, and sitting in a stocking eating a freshly baked gingerbread cookie.  Sarah  noticed one morning and said, "Wow!  Sparkle's been really active this year!"  Ha.  I think this weekend is the time for him to do something mischievous. 

--5--

Peter has a good friend at school named Joe.  Joe is kind, smart, cute and athletic.  And if you ask anyone in the 5th grade or anyone in any of the grades for that matter, who the most popular 5th grader is, I have no doubt they would all say Joe.  And all the girls love Joe.  Even all the 4th grade girls, including my Sarah, have crushes on Joe.

The other day, Peter (who has previously never shown any interest in girls) proudly told me that Joe had told him that Peter was the second most liked boy in the class by all the girls.  And then Peter said, "I sort of knew it because the other day, every time I looked up Jamie was staring at me.  She just wouldn't stop looking at me!"

He's just finally come to terms with no Santa.  I'm really not ready for all this girl business. 

--6--

And while I'm talking about Peter, can I just brag on him for a minute?  We are on a little break between guitar teachers but I think I've found him a new one.  I should have confirmation this week and hopefully we can start lessons again in January.  In the meantime, Peter has been finding instructional videos on YouTube and has been learning some guitar solos.  His latest one is the guitar solo from the middle of Bohemian Rhapsody.  And if I do say so myself, he sounds pretty darn good!

--7--

And I can't brag on Peter without mentioning that Sarah is doing really well with her piano lessons.  2 and a half years ago when they both started taking lessons, I had my doubts that the money and the time invested in them would be wasted.  But I think I can safely say that it has been money and time well spent.

And with that, I'm out.

Head over to Jen's for more 7 Quick Takes.

 

Baby update.

Yesterday was a busy day.  At 11:00 we went to Brenner Children's Hospital for a fetal echocardiogram.  After lots of prodding on my stomach and lots of images of the baby's heart, the cardiologist said with 85% certainty that the baby's heart showed none of the abnormalities they would expect to see with a Trisomy 18 baby!  He said that 80% of Trisomy babies have unformed heart chambers, holes in their hearts, or the aorta is malformed.

This is a HUGE praise!  We are hopeful that this will mean that she will have a little more time with us after she is born.  Even if it just means a few extra hours or a few extra days, we will take it!

After the echo, we went to the Comprehensive Fetal Care Clinic for an ultrasound.  Her feet were still turned in and her fists were still tightly clenched - both common in Trisomy 18 babies - but no other abnormalities were noted.

We go back for another echo and another ultrasound in a month.  The cardiologist said that in another month, he will be able to tell with 95% certainty if she has any heart defects because her heart will be bigger and any abnormalities would show up more clearly.

All in all, we were happy with the results of yesterdays testing.  She still has Trisomy 18 but at least her heart looks good.  We are holding on tightly to any good news and trying to remain focused on that.

Please continue to pray with us for her complete healing.

Here are a few pictures from yesterday's ultrasound.

4D image of our sweet baby girl's profile.  Does anyone else see the image of the face of Jesus on her head???

  

She kept hiding her face in the placenta.  I think she looks like Dan and my father-in-law!

Sweet little feet.

Sweet little hands.

Christmas Concert. (Good concert. Bad photos.)

Last night the kid's school put on their annual Christmas Concert.

And, as is my norm, I took several less than stellar photos and also, as is my norm, I thought I'd share them with you.

Sarah and Brooke before the concert.

Blurry (cuz that's how I roll apparently) Peter with his friends before the concert.

Sarah and her class sang "Let It Snow" and Sarah got to play the clavs.  They did a great job.  (And no, Sarah isn't really short, the girl on the right is just really tall for her age!)

Don't you just love the face-blocking microphone?

Peter's class performed "Angels We Have Heard On High" and they did a great job!

Don't they look like little cherubs?  

A weekend update: Busy. Merry. Bright.

We've been keeping busy this holiday season.  I'm trying to make this season a happy one for the kids even though it feels like there's a bit of a dark cloud hanging over us.  Or, maybe, it just feels like it's hanging over me and Dan.  Hopefully the kids don't feel it but kids are pretty perceptive so I bet they do.

Anyway.  Busy.  That's what we've been.

Friday night the kid's school hosted a Parent's Night Out.  We dropped the kids off at school where they got to eat pizza, play Bingo and watch movies while Dan and I went out to dinner.

We headed to the District Rooftop Bar and Grill in downtown Winston-Salem.  It's a pretty cool place and the food was pretty good too.  Even though it was in the UPPER 70s (what???) we didn't eat on the roof  - it was pretty windy.  But there were tons of people eating outside.  We opted for a less windy indoor table because I hate to be chilly while I'm heat. Well, I hate to be chili period.

After dinner we headed to the Camino Bakery.  We both had coffee and I had  chocolate mousse cake and Dan had Oreo cookie cheesecake.  Both were really good and I'm glad we went.  I love doing things downtown.  One of my few regrets in life is that I never lived in a busy downtown somewhere.  I have always thought it would be so cool to be able to walk to work, church, shopping, dining, etc.  Although I'm sure there are lots of things that would drive me crazy - like parallel parking! 

We headed back to get the kids and one of the moms asked if Peter could spend the night at her house with her son and another friend from his class.  He was so excited there was no way I could say no.  So I sent him to a sleepover wearing nothing but Crocs, a tee shirt and shorts. No toothbrush.  No pj's.  Nothing.

The next morning we went back to the school where Peter's friends, who are on the basketball team,were playing basketball and we watched the game.  Afterwards, we headed out into the low 50s weather with Peter dressed for summer and the rest of us bundled up. 

Later Saturday night, we headed to a friends house for pizza and gingerbread house decorating.  It was a lot of fun!

On Sunday after Mass and lunch, Dan and Sarah (and Peter joined in for a bit) made gingerbread cookies. It was the perfect weather for it.  Rainy and cold.  Very cool.  It was in the low 30s all day.  Where did my Friday night weather go??

Making Gingerbread cookies is a Daddy and Sarah tradition.  They bake, I watch and Peter joins them for a few minutes of rolling and cutting.

I am not good at any cookie that has to be rolled out.  I just can't do it.  And since Dan loves gingerbread cookies (with birthday cake frosting, he's a little odd that way) he has to bake them himself.

And it only took 4 hours.  Which is another reason why I don't do gingerbread.

Still early in the process - all smiles and Daddy still has his shirt on!

Time to make the frosting!

Even Peter wanted to help!

Cutting them out is the most fun!

Peter has a Gingerdead cookie cutter.  Notice the bones?

Sarah put eyes and a smile on her gingerbread man!

 And this morning, look where we found our elf Sparkle!

He was hanging in a stocking munching on a tiny gingerbread man!

I think we are doing a pretty good job keeping it merry and bright around here!

Thank you for your continued prayers.  Please keep praying for a miracle for our baby!

And she did it her way....

Last week I let Sarah cut up an onion for me.  And she did a great job.  At 9, she's finally possessing enough knife skills that I can trust her with a paring knife.

She saw my large recipe binder and immediately ran to the basement and started digging through an old box of junk that we removed from her room during the Big Room Clean Out of Summer 13.  She pulled out an old purple binder that she had previously used as her recipe binder and then subsequently discarded.

The binder contained one recipe that she created. She named the recipe Tangerine Tango and it consisted of tangerine slices and whipped cream blended together and consumed with a straw.  Yum?

The next day she decided to search the internet for a recipe that she could make all by herself.

She found a recipe for potato pancakes that called for frozen hash browns.  We didn't have any so she took a potato and grated it up herself and cracked and beat an egg.

Then she added the other ingredients and started to fry away.

Then after it got nice and brown, she enjoyed the heck out of that potato pancake!

She made the entire thing herself and every time I tried to offer a suggestion she got mad at me. 

I was only trying to explain that she needed to decrease the other ingredients in the recipe to make up for the fact that she only used enough potato for one pancake and the recipe was for 4 servings. This is one of the many reasons this girl could never be homeschooled - taking advice from wise old mom is not her favorite thing to do.  Plus this little cutie is stubborn!

So when I noticed that she added the oil directly to the pancake instead of putting it in the frying pan, I kept my mouth shut.  The potato pancake still tasted pretty good if I do say so myself and Santa is starting to feel pretty good about the Look and Cook children's cookbook he is giving her for Christmas. 

And look what I just found. Where did this little one go??

Praying for the best. Planning for the worst.

Last Monday afternoon, we got the call with the test results.  And on Wednesday we were sitting in the genetic counselor's office.

I didn't want to go.  I didn't want to hear said out loud all the things I had been reading on the internet.

But ultimately I'm glad we went.  While we did have to hear all the things I didn't want to hear, the counselor was kind and compassionate and she seemed genuinely sad that she had to tell us all of these horrible things about our baby.

We will go next Wednesday for an echocardiogram at Brenner Children's Hospital.  At the ultrasound that was done a few weeks ago the technician wasn't able to get any good views of the heart.  Trisomy 18 babies typically have heart problems so this echo will help doctor's have a better understanding of what heart problems we can expect her to have.

After the ultrasound, we will go back to the Comprehensive Fetal Care Center (where we had the counseling session) for another ultrasound to see how the baby has grown in the last month and to determine what other problems she may have.

We will have several more ultrasounds up through delivery to give the doctors the best idea of what we can expect at her birth.

The counselor is also going to set up a meeting with a neonatologist so that we can go set up a plan of care for our baby after she's born.  Assuming she isn't stillborn, we need to have a plan as to how much action we want the doctors to take.  Do we want no procedures done and only take care of her pain levels and insure that she is comfortable or do we want them to take every possible measure they can to keep her alive for as long as they can.  Or do we want something in between. This plan is put into place ahead of time based on what is seen in the ultrasounds and other tests and knowing that these change at delivery.  But it's better to have a  well thought-out plan in place before delivery so we aren't faced with as many questions right after delivery.

We talked about a lot of other things.

We talked about her being able to stay in the room with me immediately following delivery if possible while I'm being sewn up from my C-section.  My biggest fear is that she will be born alive and only live for a few minutes and that I won't be able to hold her because I'm still on the operating table.  The counselor assured me that the doctors use different procedures with babies that aren't expected to live long to allow family as much time as possible with them.

We talked about the kids being able to hold her if she's born alive or just being able to see her if she's stillborn.

We talked about the photographers that the hospital have available to take pictures of the baby right after she's born if we want that.

We talked about having a priest in the delivery room.  

We are still praying for a miracle but we are making plans as if we don't expect one.  That feels wrong to me.  Like I don't trust God.  Like I don't have the faith that he will heal her.  And I guess while I know that he can heal her, I'm just not sure if he will heal her.

So we are praying for the best and planning for the worst. 

It's beginning to look and feel a lot like Christmas!

I decided this year we were going to get a real Christmas tree.  Our really nice (12 year old) fake tree was finally starting to look a little thin and I felt like we needed a new tradition so we headed to the mountains of North Carolina to Lil Grandfather Christmas Tree Farm.

We got to select our own tree.

 (It's the one right behind us.) And then we watched as they chopped it down for us!

 

And then they hauled it away. 

It's so nice to have a live tree!  It smells so good and the kids declared it "our best tree ever!"

So I think we started a new tradition!

_______________________________

And then on Saturday Sarah's Girl Scout troop was in the local Christmas Parade.  Sarah did it last year and had such a great time.  She was thrilled when she found out they would be participating again.

Basically the girls decorate a trailer, sit in the back of it, wave to the crowd and throw out candy.  She loves being in the spotlight so this was right up her alley.

And the best part?  She had some leftover candy. And guess who's been eating that?

___________________________________

We got our tree decorated and we got all the decorations up.  Sparkle (our Elf on the Shelf) came back from the North Pole and the kids are elated.  Our Advent Calendar is up and the Advent Candle was lit last night.

I would say we are well on our way!  

(Now I just have to finish all the shopping.)

WIWS: The not half bad edition.

Linking up at FLAP for another edition of What I Wore Sunday.

Here we go!

Sweater:  Kohl's (Non-maternity so I will totally be wearing this one next year!!)
Pants: Motherhood
Boots: Target
Necklace: Target

I had a close up of the necklace but pride has prevented me from posting it.  The neck wrinkles and the chest freckles (old age spots?) were more than I could bear!

Hope you all had a great long weekend.