Monday, April 30, 2012

new therapy tool?

I realize that to some (my husband) this "tool" could possibly be seen as the unintentional aftermath of this morning's chaos and the housekeeping motivation, or lack thereof, of the inhabitants
upon closer inspection, I would choose to argue that it very clearly is a clever physical therapy tool, used to promote strength and agility, combining a discarded pajama bottom and a haphazardly-strewn blanket, crafted by yours truly.

Check it out.
You decide.

Imagine the theme song from "Rocky" playing in the background if you will..

And the should-really-be-off-limits suction cup arrow at the end was all part of the plan.
It's genius, really.
I should probably look into a patent or something... :)

Saturday, April 28, 2012

Ever had one of those nights?

Ever had one of those nights?

You know... the kind where you crawl into bed way later than you should have and realize for the first time just how freezing cold you really are.

And you try to snuggle your subzero-degree-arctic-like body up next to your full-strength-thermal-heater sleeping husband's for some warmth...and he rolls the other way and remarks you should have run your hands under hot water before you came to bed.

And after about an hour, when you're finally feeling warm enough that sleep is becoming a very real possibility, you realize you have to pee.

And you try to tell your body to shut up.

But it just won't stop taunting you. Visions of gushing waterfalls and drippy faucets play through your mind until you just can't stand it anymore.

You drag yourself out of your (finally) warm spot in bed, down the stairs, and across the entire house, then back again through the house, up the stairs, and into bed.

And even though the trip couldn't have taken more than a minute, you realize that whole first hour's worth of dethawing was in vain and you now have to start the process all over.

And just when you start to feel some sort of tingling sensation in your extremities again, a certain 4-year old boy mysteriously shows up beside your bed wanting to lay next to you.

So you mercifully lift him into your bed.

You feel his snuggly body against yours. Ahhh... you are warm at last.

Your muscles begin to relax.

Then his bright eyes look tenderly into your droopy, half asleep ones and he whispers,

"I want to go back to my bed now."

So you begrudgingly drag yourself out of bed once again, tuck him in under his wonderfully warm flannel quilt and lay next to him, shivering because you have no blanket - once again shattering your difficult defrosting work.

And after trying to escape his bed several times to seek the warmth so sought after in your own bed.. at last you are successful.

You tiptoe cautiously back into your room, with it's long awaited promises of sweet slumber.

You slip the covers back, slide in between the sheets and sigh...

The warmth is finally restored. Your muscles are relaxing. Your eyelids are heavy and your breathing becomes deeper.

You await sleep like Aunt Jemima awaits warm buttered pancakes hot off the griddle.

You close your eyes and there are unicorns flying on marshmallow clouds.

And then the phone rings.

You are once again pulled out of your oh-so-close-to euphoric state and back into the very cold harsh reality.

You rush down the stairs, imagining the worst of this 2:30 am wake up call.

And it turns out to be an old college friend of your husband's who he hasn't seen or spoken to in at least 8 years and has now conveniently managed to get his truck stuck on a gravel road and just so luckily for him remembers you live in the area and even more luckily for him, finds your phone number and decides to call to plea for help.

You sweetly ask demand your husband to call a tow truck and climb back into bed.

Your sweet sweet, oh-so-glorious bed.

You listen as the previously mentioned child awakes again, crying this time, no doubt from the "friend's" phone call.

You lay awake, praying your husband has enough common sense to return to your cozy bed, when you hear the truck engine start and watch the headlights drive slowly down the lane.

You roll over and try desperately to fall asleep.


At long last you feel your body start to sink, deeper and deeper...

This is it. You are so close you can almost taste the sweet nectar of sleep as it rushes upon you.

And then the door creaks open.

Your husband is home. The "friend" had already been pulled out.

Once again you settle in. You shut your eyes. You. Must. Sleep.

Your alarm goes off.

Your loving husband has volunteered to work overtime and is getting up at 4:00.

You lay awake in bed, wondering if this night will ever end.

The dark thoughts rear their ugly head. Sleep! How you long for it!

The sheep have been counted, yet you are eluded. The flock mocks you.

You are curled in the fetal position, willing your regular old cotton blanket to somehow transform into the electric kind.

You contemplate building a fire in your bedroom.

The cold, miserable, exhaustion consumes you.

You dream of the warmth, of the tranquility, and suddenly-- there it is.

You can feel it. It feels heavenly.

Like the first bite of a chocolate chip cookie fresh out of the oven.

And you can hear it. It sounds like... it sounds like.. little footsteps on the stairs?

Your children are up, running around the house, arguing, whining... You pull the covers over your head and try to find that happy place again.

The said children crawl into your bed and amazingly, for the first time all night/morning, you are still.

You are warm and cozy.

Sleep mercifully finds all three of you.

For two blissful, mostly uninterrupted, hours.

But inevitably you awake and quickly realize you have just 45 minutes to get 3 children up, fed, and clothed before your soccer game.

Those sparse minutes go by in a rush and soon there are shouts of "Get to the car!" and "Stay out of the mud!" ringing through the house.

But you do it.

You make it out the door with just enough time to get to the soccer field.

You have a fully stocked diaper bag, water bottles, snacks, phone...

Wait-is that your phone ringing?

It is. Your husband has already arrived at the soccer fields only to find them deserted.

Not a soul in site.

Since by this time you are already in town you drive straight to the office and sweetly ask demand to know if by chance, the soccer games were cancelled for today.

The receptionist kindly replies, "Why, yes dear they were."

You go on to ask why you were not contacted, what their plan was for such an event.

She assures you that the coaches have been working to let everyone know.

This would be a legitimate answer... except you are the coaches.

And you want to go back to bed.

But after the night you've had.. even that doesn't sound like a good option.


Thankfully this day ends up having two redeeming qualities

1. You visit your parents' house and the boys have a BLAST playing outside with Nana all afternoon while you and the baby take a nap.


2. Tonight while you are flipping through the channels to find the Sunday night shows, you realize it's only Saturday. Ahhhhh...

Thursday, April 26, 2012

The Many Talents of Ella

Thanks everyone for your encouraging comments the last few days.. It's amazing how much better things seem after a good night's rest and a cup (or 6) of warm creamy coffee. What? Coffee isn't creamy? Ok, let me rephrase that. Things seem so much better after a cup of cream with a splash of coffee. :)

And now.. the many talents of Ella!

We'll start with the obvious: Looking adorable 

Trying to put the coin in the piggy bank. Miss Smarty Pants!!

Eating on the roll. She's a busy girl! No time to slow down..

Looking Adorable. Again. I already said that? Too bad.. My blog.

Teething. Ok, that might not be a talent. Again.. my blog 

And.... Playing the piano while texting. She truly is amazing!! 

I am so thankful for my little girl who teaches me so much everyday!

Tuesday, April 24, 2012

my knight

And then her knight in shining armor arrived.. calming the hysterical 4-year old, swooping the 6-year old back to his rightful bed for the night, and leaving her weak in the knees from the smells the bleach wafting out of the freshly cleaned bathroom.

And all was well.

Until the next evening. When almost the exact same thing happened.

*Exasperated sigh...*

Monday, April 23, 2012

Headed for juvee??

What a beautiful, wonderful spring day it was here in Nebraska. 70 degrees, sunny, slight breeze... Ahhhh....

To celebrate this glorious day, the kids and I decided to take a walk to the park. I had visions of us playing together, laughing, making wonderful memories.

It was so gorgeous out, it would have been impossible to imagine anything short of frolicking together through these green fields surrounding us. Very strikingly similar to the Von Trap children on The Sound of Music actually... Doe a deer. A female deer... Anyone??

Anyways, the walk started out great. Nolan was riding his bike, Charlie was in his silly 4-year old mood, and Ella was sitting nicely in her stroller without me having to carry her twisting, squirmy body for 3 sweaty miles like the last time I foolishly attempted a walk...

Unfortunately when we arrived at the park, there were two terribly behaved boys there. They didn't listen, talked back to their mother, joined a park buddy in using mean words, disrespected others' things, and just used plain ol' awful manners.

But the really unfortunate part is.... those boys belonged to me.

It's easy to blame their awful behavior on other things.. The 'park buddy' was actually the one who started using the mean words. My boys were tired. They were hungry. They aren't feeling 100% with their colds/allergies. Blah blah blah...

Bottom line is: My usually well-behaved children seem to have become a thing of the past. And this is my call to action.

I want to raise my boys into Men of honor. Men of character. Men who stand up for what they believe in and do the right thing, even when others aren't.

That's why I am so disappointed in their behavior tonight...

We have invested so much in them. We have spent SO much time and energy teaching them right from wrong, instilling biblical values. We have spent countless hours making them feel loved and secure, spending time with them, playing games and make-believe. We have guided them, taught them, loved them...And it physically hurts to see the little hooligans toss it all aside in one night of utter humiliation.

How did this happen???

When they were using means words (ok.. it was 'poopy') I actually felt like I could hear them as surly teenagers, cussing us out in a rage of anger. When they were stomping on a frisbee someone left at the park, in my mind I was actually seeing my future sons, graffiti-ing obscene images on the side of the school building. And when they were disregarding my cries to "use your manners!!" I envisioned them dropping out of school to live in their drug dealer girlfriend's mom's trailer...

Am I overreacting????

I wish I could say I handled the situation with dignity and used the night as a teaching/learning experience.

I wish.

I did stay calm.. until we got home and Nolan threw his dirty shoe right smack on top of Ella's leftover supper. What was that about the straw that broke the camel's back??

Let's just say they are both unable to go to ANYONE'S house (yes, even Grandma and Grandpa's for after church breakfast-harsh I know) until they prove to me that they do, in fact, have ears to listen, mouths to encourage others, (Please-no snarky comments on the quality of my 'encouraging' words) and hands to help others instead of harming.

I wish I could say we turned the night around and went to bed with loving snuggly thoughts.

I wish I could say I was relaxing with a glass of wine right now.

Heck-I just wish I could say the kids are sleeping. Unfortunately, as I currently type, Ella has awakened from what I thought was bedtime (apparently to her it was merely a 1 minute pre-bedtime nap) and is hanging sideways and upside down off my lap. Not to mention, she has been extra gassy tonight (B.A.D. for a CdLS kid). This sweatshirt has seen more pukey spit up tonight than I care to think about... Nolan is 'sleeping' in our room because Charlie woke up screaming (no doubt having nightmares of an ugly monster disguised as his mother threatening to take away Christmas), subsequently waking a crabby Nolan up, who did not take kindly to that. Charlie is STILL screaming and coughing (See-I told you he was sick!!) and will NOT calm down.

Oh-did I mention JJ is gone tonight?

I know they're only 4 and 6. I know they're just kids. I know it's probably "normal".

But I don't want them to be normal, average.

I want them to have big dreams. I know I do.

I dream for them to be bright beaming lights in this dark world. I dream for them to make a difference, to change things for the better. I dream for them to be the kids who stand up and say "Hey-that's not right" when someone is being bullied.

Not frisbee-stomping, poopy-name calling, no-manners boys.

Are we on the path to juvee?

Seriously-this frazzled mama would love some encouraging comments!
Thanks so much!!

Saturday, April 21, 2012

Top 10 (or 2) Reasons My House Is Always a Mess

Warning: May Contain Partial Nudity
Parental Discretion Advised

10. "We're watering the garden!"
Note: See the cute little blue watering can in the background? 
That was how I envisioned them watering the garden

9. Apparently they had different ideas

8. We call him "Pigpen" for a reason. 
This kid could seriously be eating dry noodles 
and STILL somehow end up looking like this.

7. Just a little painting fun. 
Dear boys 10 years from now... so sorry about this

6. Yes, those paint marks do look suspiciously like fly swatters... Don't ask.
and this...hee hee

5. These shorts were actually bright orange at one time...

4. Don't you DARE open that door

3. "We cannot believe you are going to make us clean this window"
Ohhhhh.... believe it.

2. Apparently their shirts need to match their faces (and legs, and hands..)


STYROFOAM!!!! I am seriously still cleaning this stuff up. HA!

Thursday, April 19, 2012


I have a confession to make.

Sometimes... when I see my boys doing something they're not supposed to... I quietly back out of the room and just pretend I didn't see them. I listen to their mischievous giggles from the other room, knowing I should discipline or at least stop them... but I just can't bring myself to do it.


Because I cannot stand whining. And fighting. I would take them being "naughty" any day over fighting and whining, as long as they're working together. (somebody may need to remind me of this in the future...) I actually love to hear them plotting and planning (as long as they're not hurting anyone), not knowing I'm listening from the next room. I love to see them working together, helping each other, and coming up with creative solutions, even if I know we'll have a mess to clean up later. But the whining about who took what toy and who had it first, who said what mean thing or who hit who... I have close to zero tolerance for.

However, yesterday morning after Nolan was off to school and I was getting ready for the day, I heard Charlie whining about something and yelling, "Mom!! Hellllp!!"

I walked into the living room to find this

Charlie: "Mom!!! Ella won't stop taking my cars..."
Ella: obviously thinking "Seriously... What. Is. His. Problem??"

The whining and fighting went on...

and on....

"All right... you wanna play like that? We'll just have a stare down then"

I honestly couldn't have been happier. Charlie continued to complain while I just watched, smiled, and yes, even laughed. I am just so happy that Ella is moving around, knowing what she wants (which just so happens to be whatever Charlie has at the moment) and stubbornly going after it. I LOVE that she is trying to take his toys. I LOVE that she is getting into everything, tearing puzzles apart, making a mess.

For the first time in my life I LOVED hearing whining and fighting.

Monday, April 16, 2012

So Big

This morning our house was a revolving door. First came our Speech Therapist, accompanied by our Special Education Teacher. They are helping teach Ella some sign language and also giving us tips on how to encourage her speech. As they were finishing up, our Physical Therapist(s) came by to watch Ella show off her mad army crawling skills. And that's about all they got done... Ella got a little irritated threw a huge fit, if one of them actually tried to touch her. Right as they walked out the door and Ella thought she might have a chance at a nap, ha!!  The ESU audiologist came by to check Ella's hearing. (She still didn't pass...)

No rest for the weary tomorrow either... We are venturing into Sioux City for a MOPS meeting in the morning, then traveling to Vermillion for Ella and Charlie's 15 month and 4 year check up. I'm sure they will test Ella for RSV and try to coax me into being admitted since she has a tiny sniffly nose... (Love our overly cautious Dr--seriously I do!!!) And if Ella thought she might get some relief after that, just wait... she still has OT to look forward to on Thursday!

I'm not a special needs mama looking for pity. I don't want anyone to feel bad for us. (Although if anyone does and would like to drop by a meal or a bottle of wine we usually eat around 5:30) Kidding!!! Kindof... :)

Life is often hectic. The sheer number of doctor appointments, in-home therapies, phone calls to insurance companies and government agencies, forms to fill out... it's often overwhelming.

Tonight I was feeling exhausted just thinking about our busy week and the things I need to get done. I was playing 'So Big' with Ella and all of a sudden, for the very first time she put her own short little arms up in the air to show me how 'big' she was. I thought my heart would explode with joy...  Ella ran screaming and giggling into the kitchen to show Daddy (Okay, maybe that was me... but she was really proud of herself too!)

The Dr. appointments, all the miles traveled, all the hours on the phone with insurance companies, all the frenzied minutes spent shoving things in the closet cleaning the house before the therapists arrive... They are all worth it. There are so many unknowns with Ella, we never take anything for granted.

Every. single. milestone


"SO BIG!!!!"

Sunday, April 15, 2012

late night rendezvous

This weekend JJ's family was home, so we spent Saturday night hanging out with his brothers, sister, and their wife/girlfriend/husband. It was so much fun and we got home REALLY late. Okay... it was a little after 10. 

Anyways.. Ella had been sleeping/passed out in Jess's arms for awhile, so when we decided we were getting close to too tired to drive the 1/2 mile home, we threw her in her carseat and headed up the road. When we got home, she started to wake up a little, and as it was practically the middle of the night, we did NOT want that. So what did we do? Shut off the lights, tip toed past her, and went upstairs to bed, hoping she would fall back asleep in her (unbuckled) car seat.

We didn't hear a peep out of her all night, so we assumed all was well. Until this morning. JJ woke up and went downstairs to find this.

An empty carseat

Thankfully the baby escape artist hadn't gone too far. 

She was happily munching on a cowboy boot and she looked rather surprised to see us.
"Oh hey dad... Bout time you got up."

I wonder what she was doing all night???

"Anyone else want a snack? I've kindof got the munchies..."

"Wow mom.. Next time we get groceries, I am totally throwing some good stuff in the cart.."

"Oh, how I love you squeaky pop-up toy"

"Ah-HA! I am the new Hunter Hero!!"

"Dress-up time!!"

"You posted WHAT about me on facebook!?!"

I'm sure she had quite the adventurous night, but I'll tell you what she wasn't doing..

Ella was NOT folding this heap of laundry,

putting away dishes,

OR taking the trash out...

The sight of these messes is apparently enough to make Ella cry... 
Guess I better get to work and pick up her slack. :)

Hope everyone had a good weekend!

Friday, April 13, 2012

what is CdLS?

First of all... Wow. Thank you all so much for your kind words and support yesterday! Each message and email really mean the world to me... It's been on my heart for awhile to share this, but for various reasons I've held back. Today I want to answer the question "what is CdLS?" This blog won't just be about Ella and CdLS, but I think some of you might be a little curious about what it is...

There's an amazing website with a ton of great info. They also have a wonderful foundation with someone always there to listen to you, answer questions, and find other people in your area to connect with. (Unfortunately for us the closest family to us is by Omaha) They have been really helpful to us as we enter this journey.

Cornelia de Lange Syndrome (CdLS) is a genetic disorder present from birth, but not always diagnosed at birth. It causes a range of physical, cognitive and medical challenges and affects both genders equally. CdLS does not discriminate—it’s seen in all races and ethnic backgrounds. The occurrence of CdLS is estimated to be 1 in 10,000 live births. (I copied that straight from the website)

As with many other syndromes, individuals with CdLS strongly resemble one another. Typical facial features include thin eyebrows that meet in the middle, long eyelashes, a short upturned nose, and thin downturned lips.

Other characteristics include low birth weight (often under five pounds), slow growth, small stature, and small head size. Other features may include excessive body hair and small hands and feet. Common medical issues include gastro- esophageal reflux disease, heart defects, seizures, feeding difficulties, vision problems, and hearing loss. Limb differences, including missing arms, forearms or fingers, are seen in about 25 percent of individuals with CdLS. Behavioral and communication issues and developmental delays often exist. (Ok.. I copied those last 2 paragraphs too...)

Time to stop plagiarizing... What does this mean for Ella? Well, like I said in my last post, we don't know for sure... But the characteristics she does have are:

   1. Small stature. She is 15 months old and weighs about 18 1/2 lbs. My boys weighed that at 6 months. That being said... There is a special growth chart for CdLS kids and she is at the top! She actually even measures in the typical chart-a proud member of the 2nd percentile club! I don't think she's on the typical chart for height, but hey--I barely am... :)

   2. GERD (gastro- esophageal reflux disease) She has some reflux issues that are being pretty controlled by Prevacid. They are not as severe as a lot of kids-no surgeries or g-tubes. No scary choking and gagging episodes, but she sure is a gassy girl!!! She is eating mostly table foods, but we are still careful to give her small, soft bites. She's also a little sensitive to different tastes in her milk.. We've tried switching from her nasty Nutramigen formula to Pediasure and Whole Milk, but she refuses both. Ugh!!

   3. Heart Defect. I addressed that in the last blog, so I won't say much. But she does have a bicusped aortic valve that we get to look at every year as a birthday present to her. (Ella-you can thank us later... It's probably better than going to Chuck E. Cheese)

   4. Vision Problems. We see an opthomologist every 6 months to monitor her vision, but so far everything looks great! She does have a slight ptosis (droopy eyelids) but it is not affecting her vision. If the ptosis isn't affecting her vision, they like to wait until the child is around 4 years old to do surgery to correct it. I get a LOT of "Ohhhh.. she looks so sleepy" And that's ok. It gets old, but it's ok. Really.

   5. Hearing. Ella hasn't passed a hearing test. But I know without a doubt that she can hear. Very well. She startles easily, responds to her name, and gets VERY upset when one of her brothers is crying. (She is a very compassionate soul!) We continue to monitor it and are thinking about looking into tubes. The problem with a lot of CdLS kids is that their ear drums are so little they can't even get tubes in them.. One more thing we get to learn about her!

   6. Developmental Delays. This is a tough one. Before she got sick with salmonella poisoning she was pretty much right on track. She rolled both ways at appropriate times, smiled, laughed, and was SO close to sitting up when she got sick. Obviously that set her behind. (Heck-if that would have been me with the salmonella poisoning I STILL would be flat on my back...) It's hard to know where she would be without that illness, but I guess it doesn't matter. In the last few weeks she has started clapping, waving (even waving when I merely said the words 'bye-bye'--BIG step!) and.... *drumroll.... the other day she started army crawling!! She has been SO close for months now, but she finally just took off one day. Of course me being the extreme procrastinator that I am, looked around in a frenzied panic as to what I all needed to pick up and baby proof. As if I didn't have an extended 15 months to do that....

   7. Microcephaly (Small Head Size) This is perhaps the one that scares me the most. It means that her brain probably isn't as developed as it should be. That being said there ARE cases of people with microcephaly that have normal intelligence. When she has first diagnosed and the Dr. was telling us these things, instead of hearing that my daughter's brain is underdeveloped, I heard "Wow, Maria. You are so fortunate! Ella is most definitely one of the rare cases of people with normal intelligence and will positively be able to live a "normal" life." I'm not sure how that message changed so much in translation... Call it hope. Call if faith. Call it plain ol' flat out denial. Whatever it is, I clung to it. But that being said--no matter what happens or how "developed" her brain in we will love and cherish every second we have with her.

I think that's about it for characteristics... But another thing I'd like to address quick is what causes CdLS. From what I understand... nothing. It's just one of those things that happens. It wasn't heredity in that one of us carries the gene and we have a very slim chance of having another baby with CdLS.

I wanted to talk about this because... maybe I need to hear it myself. I've spent months agonizing over what I did during my pregnancy to cause this. I went over every detail. "Did I drink too much caffeine?" " Eat too many buttered noodles and not enough fruits and veggies--Hey! I was SICK!" "Use too much mod podge???" Yes, I googled mod podge in pregnancy... I've analyzed everything I ate, my emotional state, activity level, tested our water..

It's hard to accept that there was nothing I could have done differently There is still a certain amount of guilt I deal with. But I know I need to have faith that Ella is exactly the way God planned her to be. And I am so thankful for her. Just the way she is.

Thursday, April 12, 2012

Ella's Story: Part 2

I've been wanting to start a blog... Not because I think my life is so ridiculously interesting you all can't live another day without reading all the details. Or because I want to brag about my unbelieveably adorable children (that's just a great extra perk :)) But because of my daughter Ella. About a year ago I wrote a post on Facebook titled "Ella's Story". It was all about her birth that came a surprising 3 weeks early. Well, there's been another story "Ella's Story Part 2" that's been in the works ever since then. I've just been trying to get the courage up to write it. A lot of our close friends and family know some of this story, but up until now we haven't announced it to the "world". I've tried to come up with ways. Nothing just seemed right. Those of you who know me well know that I can't just tell a simple story. (My husband teases me about this all the time) I have to back up and tell everyone how it REALLY started and all the background information because it just makes the story that much better (I think). Well, I wanted to tell Ella's story, but I just couldn't do it without everyone knowing ALL the background information and how we got here. And for some reason it never occured to me to start a blog. Until now. So I hope you're ready for a "Maria" story! :)

December 2010
We were eagerly expecting our 3rd child in January. I had a fairly easy pregnancy (as much as one can have while chasing around a 2 and 4 year old boys!) We were excited to meet our newest family member and were waiting to find out if it was a 'he' or 'she'. I went in for my last (I thought) ultrasound and it seemed as if everything was fine. Yay! A healthy baby! The next day I got a call. They wanted me to come back in for another ultrasound-the limb length was measuring a little short and they wanted to remeasure. The nurse assured me over and over she was SURE it was nothing and not to worry. She knows my husband and me and we've both *ahem* slightly vertically challenged, so that was probably it. But they were still going to check. Just in case. But try not to worry about it. All weekend. So what did I do? Worried about it. All weekend. And of course scoured the ever reliable and almighty Google on what a short limb length could mean... When I went in for the ultrasound, Eric (the tech guy) said I measured slightly small with the boys too, but this one was just a little smaller. He said it could be nothing. But it could be something. Thanks for clearing that up... When I talked to my Dr. she said the REALLY smart Dr. who actually reads the ultrasounds (I don't know what his title is, so really smart Dr. seems appropriate) said he looked at JJ and I's height and the baby's size and said there's absolutely nothing to worry about. It didn't look like Downs Syndrome, (what I was worried about) and everything else looked great. Unfortunately my Dr. didn't look very convinced as she told me that. I tried to dig deeper and she said "There might be something else going on. We'll just have to wait and see." Talk about a difficult last few weeks of my pregnancy... I tried not to worry. I tried to enjoy it. But it was hard. Really hard.

Fast forward to January 6, 2011
I have Ella's Story posted on Facebook so I will sum it up here. I started having labor pains in the middle of the night, which I ignored and contributed to gas pains (since she wasn't due for 3 weeks and I had a C-section scheduled, they couldn't possible be labor pains!) They were. Ella came into this world at 8:20 am on January 6. She weighed 6 lb 4 oz and was 18 in long. We were so shocked and overjoyed she was here already and she was a GIRL! After almost 6 years of being the only woman in the house, I had no idea what to do with pink! She had a little fluid on her lungs since she was early, but they got it all out she was breathing fine on her own. Everything looked great! She was beautiful and perfect.


Then my Dr. came in and told me that when they did the chest x-ray (to check for fluid) it looked like her heart was enlarged, so we needed to do an echocardiogram. A little scary since all we wanted to do was cuddle her and love on her! We were at a small hospital, so thankfully they sent someone down from the big hospital to do to ECG instead of transporting her. The lady doing the ECG told me the heart did not look enlarged (It turned out to be a shadow from the thyroad-whew! coast is clear!) but she did find something else. (wait-forget the 'coast is clear' comment) Ella has a bicusped aortic valve. I didn't really know what that meant at the time. But it sounded scary. We set up an appointment with a Cardiologist. Then my Dr. came in and said through the chest x-ray they found that Ella also has some Hemi-Vertebrae. Basically, she explained, when the cells were coming together, they just came together differently. Like, not lined up right or something. It sounded a little odd, but she said that in itself wasn't really wasn't anything to worry about. It shouldn't affect her. But the fact that she had multiple "abnormalities" was a little concerning. The heart, the vertebrae, the limb length. My Dr. said, "There might be something going on". Again--thanks for clearing that up....

We told our family about these things and everyone seemed reassuring that they were SURE it was nothing. We came up with an explanation for everything. 1. The limb length-Look at my legs. Case closed. 2. The Hemi-Vertebrae-I found out a few years ago I have an extra vertebrae. So apparently random freak vertebrae issues run in our family! 3. The heart-Actually this 'bicusped aortic valve' isn't that uncommon of a heart defect. In fact, my brother-in-law's father actually had one. Obviously no relation to me, but just goes to prove that it's just one of those things that happens.

We came home blissfully enjoying our baby. We chose not to tell many people about these things that were "wrong" because 1. We just wanted to enjoy her and not talk about the "bad" things and 2. We really didn't think they were a big deal. (Sorry-apparently I like lists....)

The weeks went on. We were so in love! Her eyelashes were so long and her hair so beautiful! We saw the Cardiologist and he confirmed that her heart defect wasn't causing any harm right now and it's just something we'll continue to monitor every year. He told us sometimes people have this defect and go their whole entire lives without ever knowing it. Sometimes it does cause problems, but that's why we're monitoring it. The only problem was that Ella didn't seem to be gaining weight as fast as they wanted her to. She was gaining-just slowly. I was driving almost an hour to the Dr. weekly or more just to weigh her. I was breastfeeding, but finally started pumping and feeding her with a bottle just so I could write down and prove exactly how much she was eating.

Then at one of those weight-check appointments she coughed. It didn't sound good. They ran some tests. She had RSV. At 2 1/2 weeks old. Long story short-she was transported (via airplane) to Sioux Falls (the big hospital) for an almost 3 week hospital stay which resulted in her being intubated for 10 days.

Poor baby...

While we were there some Dr.'s came in to talk to us about what could possibly be "going on" with Ella (other than the RSV) One of them was the Genetic Dr. She assessed her, pronounced she had a small head and would have developmental delays and learning disabilities, and was testing for a Syndrome called Smith-Lemli-Opitz. Ok... maybe she was a little less harsh in saying it (didn't seem like it at the time though...) So here I was, in the hospital with my tiny baby girl, who is intubated, hooked up to multiple poles and tubes coming out in every direction. Being told that, even after she recovers from this, my daughter won't ever be "normal". Of course I handled it with strength and determination you all would admire. NOT! I broke down. I was a mess. And I tried to keep it all in.

Fast forward a few months:
The Smith-Lemli-Opitz test came back negative. Yay! Still hope that nothing is wrong. They decided to do a Micro-Array test that tests all your chromosomes to see if there is any abnormalities. That also came back showing nothing. HA! I knew it! They explained that that still doesn't mean there's not something deeper in the DNA that's different, but to me it gave me hope that they were wrong. I was starting to get a little annoyed that everyone wanted to diagnose her with something. Couldn't they see she was perfect?  She was growing, she was developing, she was FINE! We didn't share this with many people, even though on hindsight it would have been nice to have some support... We just didn't think we had much of a reason to worry and we didn't want anyone else to worry. We also didn't want anyone to look at her differently like "She might have some kind of syndrome" or feel sorry for us. We just wanted everyone to enjoy her for being her beautiful little self!

Diagnosis Day
We went in for a check-up at the Genetic Dr. and she waltzed in, threw our delicate baby, that we were always so careful with,  around a few times, went out of the room, came back in with a GIANT book, flipped to a random page and pointed to a random syndrome called "Cornelia DeLange Syndrome" (CdLS for short) and said "this is what she has". Wait--WHAT?? All I remember her talking about were the symptoms Ella DIDN'T have... some things that are typical of this syndrome are missing digits or abnormalities (nope), hairy body (she did have quite a bit of hair on her head, but no where else), eyebrows that are more arched and come together in the middle (not really that I could see...), a cleft palete (again-no), feeding problems and oral aversions requiring a G-Tube (she ate her bottle like a champ!). It seemed like the only thing that Ella did have was some reflux (being controlled by Prevacid). Oh-and the heart problem, freaky vertabrae, and small stature-but I'm pretty sure we already explained all that away, right??...

Turns out there isn't a great test to confirm this diagnosis that is 100% accurate, so for now it is just clinical. Do you think I broke down again? Weeped uncontrollably at the thought of this and googled everything I could find out about it? Nope. I was unbeliebably strong. Because I didn't believe a word of it. It just didn't make sense to me.  I didn't see it. So of course I wasn't going to tell anybody about it! I didn't want anyone else to think anything was wrong with her.  I mean, how in the world could I possible have a baby who was anything less than "perfect"... Self-righteous much??? I think so.

Anyways, the months went by and somewhere along the way I started to see it. I don't know when or how it happened, but I started to realize that my daughter, my precious Ella, was not the baby I thought she was going to be. It was a very slow process, and I'd like to again say that I handled it with dignity and grace, but again... I don't think i did. I know I didn't. I was devastated. I couldn't talk to anybody about it. I couldn't even think about it without crying uncontrollably. Those were a dark few months for me. I just did not understand how or why this could happen to us. It seemed like the absolute worst possible thing in the world. And actually, I still haven't worked through all of it. I'm hoping writing this blog will help me process some feelings I'm having a hard time with. It seemed like ALL around me, people were having "healthy" babies. Every baby I saw was a slap in the face that mine was not "perfect". That something was "wrong" with her. It was absolutely awful. And I'm sure I did the best thing possible for myself by isolating myself from everyone around me... (insert sarcasm here)

Fast forward to now.
We LOVE LOVE LOVE our precious Ella girl-our little love bug. We've been on quite the journey with her... Throw in a 5 week hospital stay with salmonella poisoning of all things... and it really puts things in perspective. I actually really wish I would have started this blog awhile ago. I think it would have helped me process things a little better, but better late than never I guess!! I will post more details on how she is doing now in the days to come (I think this is long enough for today. LoL!) For those of you who are wondering what this CdLS diagnosis means, the fact is-we don't really know. Each child (CdLS or non) is SO unique and special that you can't stereotype her into what she will be like. She seems to have a pretty mild case, but we do know she is facing some developmental delays, especially in speech and communication. We don't know a lot of things, but what we do know is we get the privilege of loving her every single day, encouraging her to be the best she can be, and letting her write her own story. Not really so different from any other child I think...

It is taking a lot of courage for me to post this... Part of me wants to go on "pretending" nothing is wrong, but I know that we won't be able to experience the full blessings Ella is bringing into our lives if we don't open ourselves up to share our story with others. At first I thought this diagnosis was the absolute end of the world, but I am beginning to see it is as just a different path that has and will continue to bring numerous wonderful things into our lives. All I ask is that you continue to see Ella as the beautiful unique girl that she is-please don't label her or any other child with special needs based on what they can't do. There are so many amazing things to see when you take the time to look a little deeper. Thanks for reading! I am excited to share more about Ella and our lives. :)

Wednesday, April 11, 2012

I am officially a blogger!!

I really thought I would never say this, but I am (obviously) officially a blogger!

Welcome to "Life on M Avenue"! I am excited to share our story with you. I hope you endure enjoy it!

Here are a few things you get to look forward to reading about:
   1. Me bragging about my kids
   2. Daily Life in rural Nebraska
   3. My cute kids
   4. Some craft projects
   5. Funny things my kids say
   6. Things I do with my kids
   7. How much I love my kids
   8. My opinions
   9. My kids
   10. Did I mention I might talk about my kids?? :)

Yup, these ones..

Seriously though... The reason I'm starting this blog is because we've been dealing with some more serious issues with Ella than most people know about. This past year has been very difficult for us and there are some things we've I've been struggling with understanding... So I am hoping that maybe putting things down in writing will help us me process some of those issues. But I will talk about that more tomorrow...

How's that for a cliffhanger on my first day on the job???