CDH Awareness Day

Today (March 31st) is CDH Awareness Day!

What a difference a year makes and who knew this day would mean so much to our family. We have come from having no idea what CDH was... to having an intimate awareness of its' risks and potential outcomes... to welcoming our superhero Ruby into the world.

Today has been a good yet emotional reminder of how lucky we are. Looking at some of the CDH support group websites and facebook pages, I scrolled through comments from those who are going through or have also gone through this rollercoaster. The sad stories are tough to read, the positive ones- inspiring. This time last year I vividly remember being on a first-name basis with my expanding belly and hoping against all hope that she would be okay.

In the spirit of raising awareness, here are a few facts about CDH:

• CDH affects approximately 1 in 2500 babies
• It occurs when the diaphragm fails to form properly and abdominal organs migrate up into the chest cavity, preventing the lungs from growing properly
  
• It is as common as Spina Bifida or Cystic Fibrosis
• There is no known cause
• The average survival rate is 50%
• Many CDH survivors have problems with breathing, feeding, heart function, hearing, and developmental delays
  

I am excited to say that we have raised almost THREE THOUSAND DOLLARS for CDH research through sales of "Ruby's Recipes"!!! Thank you for supporting the cause. I hope that, through research, we can find a way to prevent and treat CDH so that more babies have "happy beginnings" like Ruby.


It's time to start planning a birthday par-tay!!!! It's gonna be one helluva celebration.

With gratitude,
Adie

Breaking Outta the Bubble

Ruby had her 9 month surgery follow-up last week and, as expected, she ROCKS. If there ever was a poster child for a "CDH A$$ Whooper" (pardon my French), Ruby is IT. Her lungs are looking great, there is no recurrence of herniation, and the doctor couldn't even hear a difference between her lungs when listening with a stethoscope. (insert sigh of happiness and amazement here)

What this good news means for Ruby and for our family is that we are BREAKING OUT OF OUR BUBBLE!!!! We have spent the last 9 months trying to make sure that Ruby didn't get sick so that her lungs had time to heal and expand. That effort has meant that we have had to avoid many public places and some adorable and much-loved babies and toddlers in order to keep the germs at bay. Almost every table or surface in our home has been outfitted with a handy-dandy hand sanitizer dispenser. Clearly someone with OCD has taken over the decorating duties! Although it has been tough in some ways, I wouldn't do it differently given the circumstances. Ruby is now prepared to take on her first cold or virus. I can't believe she's made it 9 months (and counting) with nary a runny nose!

Ruby enjoyed her first visit to the park and first ride in the swing. I think she could get used to this!!

Our first family brunch!

Sampling some toast. mmmmm

Aha! we found a texture she can stomach- bananas!

So, just to be clear- hazmat suits are no longer required to enter our house... it may take a little time to dial down the germ-phobic tendencies we've been honing for that past 9 months but we're ready for play dates and restaurants and all sorts of fun!

Bring it on :)

Furry Baby Turns 4!!!

We would remiss if we didn't let you know that our furry baby and "first born," Mr. Toby Bumbles Ingram McVeigh turned FOUR today. After doing the dog-years conversion I am thrilled to announce that we are the proud parents of a 29 year old!! Who knew we had an adult living under our roof? Time to start paying rent buddy!

I wonder if he shares any similar dreams and anxieties as his human friends of the same age...wondering if he'll meet the right girl (or boy... or eunuch as it may be) and have a house or kids by the time he hits the big 3-0. I guess that little operation he had as a youngster crushed the last dream.

I couldn't help myself with this picture :P

His birthday snuck up on us so the day has passed with little fanfare. He did get a good walk around the block, a photo shoot (as evidenced above), and I might even treat him to a spoonful of peanut butter. mmmmm life is good.

Happy Birthday Toby!!!

Kiss me, I'm "Canerican"

"Canerican" you ask? That's code for: Canadian/American!! :)

Our little leprechaun celebrated her first St. Patty's Day today. We made sure she was properly clothed in green so she wouldn't get pinched.

mmmmm. socks for lunch...

New York Times for dessert!!!

Time for a green beer?

"I may not be able to talk yet, but I can do a mean wolf whistle."

...and just for posterity.. the "barf face." Whenever we see this one we plead in unison "please no, please no." Right now we see this face every time we offer Ruby something to eat that has any sort of texture. I fear she may be eating pureed carrots and peas at her wedding... nobody wants to see a bride make this face!

The latest Ruby Report is:

• She's saying MAMA!!!! (yay, I win!) Just kidding- Scott has been sweetly encouraging her to say mama so I can't rub it in too much. We think she may have me confused for a sweet potato or diaper cream...but it's nice to hear anyway.

Happy St. Patrick's Day everyone!

9 months in, 9 months out!

It's been 9 months since Ruby "sprung" herself from her personal incubator (me). And let's be clear... by "sprung" I am sarcastically referring to the miracle of childbirth that required multiple needles, sweat, and painkillers.

Although I have blocked the gory details of that experience from my memory (as all smart women surely do), I wouldn't change a thing about the sweet little peanut we have as a result. Look at those 2 front teeth! Ahhhhh-dorable.

Here she is "posing" for her 9 month photo shoot. Her agent has told us that she is now refusing to do still photos and prefers action shots only. Apparently they're more flattering?

The plastic hanger wins favorite toy of the day award!

Ruby and Toby watch Dog TV.

"Mom, it's been lovely visiting but if you'll just open this door I'll be on my way..."

Here are some videos of me trying to get Ruby to pose with Horton and of her just being a bouncy baby.

In the past 2 weeks since she started crawling Ruby has been gaining speed and has started pulling up a bit too. I'll try and catch some video of a high speed chase (a.k.a. Ruby pursuing a shoe or other inappropriate chew toy) soon.

Stay tuned and thanks for reading!
Adie