Honesty Pays Off!

I'd like to thank both Jade and Elizabeth for giving me the "Honesty Award" at the "Bloggies" (as I am calling them) that are circulating the internet these days. Seriously though, thank you. My goal here is to be as honest as possible about my struggles, my joys, my faith and my family.

And so it continues ...

Here's how the award works:

1. Thank the person who gave you the award and link to their blog.
2. Share 10 honest things about yourself.
3. Present this award to 7 other whose blogs you find brilliant in design or content.
4. Tell those 7 people they have been awarded.

OK, here goes ... 10 honest factoids:

1. I am a complete control freak. I hate when things are outside of my control...I try to pray on it, and the Serenity Prayer is good, but I still struggle with this daily

2. I used to play old musical albums (Sound of Music, West Side Story, etc...) and put on "shows" for no one in our living room. Typically this was done when no one else was home, so sadly after I turned 12 yrs of age. Yes, when I should've been figuring out which outfit I was going to wear to a dance or how to talk to the boy I liked, I was performing as Leisel (my fave song was "Sixteen Going On Seventeen") to our couch. Hey...being the youngest by over 9 yrs kind of makes you like an only child sometimes....hence why I also held "skating parties" in my basement and just skated around to music on my own. (holding an "L" to my forehead)

3. I have recently developed a fear of fun things such as skiing, riding rides at amusement parks, and just generally anything that might cause death by some freak accident. I am no fun anymore!

4. I am going to try and run a 5K in May. I think. I am going to start training in January because if I start now, Christmas and my schedule will derail that. I am looking into programs now...and I am taking suggestions.

5. I love things being neat and organized, but I cannot throw anything out! I am getting better about this, but between Bill and I, our house is full of stuff that has no business being there. Our basement looks like a bomb went off it it. And I have more stuff waiting for me "up north" in storage. *sigh* One day I'll have a clutter free home...I just know it.

6. I am OCD about labeling or organization, however. Everything has to be in alphabetical order, or symmetrical, or centered EXACTLY in the middle of where it should be. My clothes are in order by length of sleeve (or absence of) for shirts and skirts first, then capris, then full length pants, for bottoms.

7. I am slightly overwhelmed by how large of a task bringing awarness to CHD is. It seems almost insurmountable at times...it seems like we will never get there...that it will ever be on the same level as Autism or Breast Cancer. Where is our Jenny McCarthy (only less abrasive)?!?! How can Dr. Oz and The Doctors have shows on accepting hermaphrodites and smelly ear wax, respectively, and NOTHING ON CHD?! Blows my mind.

8. I am still angry about my Mom dying. Always will be. It's not fair that any child should have to grow up without a parent.

9. I am still angry about my niece dying, my cousin's son dying, my friend's children dying, any child dying. Always will be. It's not fair that any parent should have to bury a child.

10. I am thankful everyday for my faith, without which I would've surely lost my sanity by now. It gives me an achor, something to cling to, even in my darkest days. I don't know how people without faith survive hard times.

OK, Elizabeth was right, that was HARD!!!

Here are my 7 "awardees": (you will be receiving your personal notifications ASAP!)

1. Jess (http://themcclenahans.blogspot.com/)

2. Juli (http://babymaverick.blogspot.com/)

3. Andrea (http://redbudcorp.blogspot.com/)

4. Stephanie (http://kammeraadfamily.blogspot.com/)

5. Levi (http://www.babyaidensjourney.com/)

6. Kelly (http://chdbabies.blogspot.com/)

7. Isabelle (http://andreswalkwithchd.blogspot.com/)

More Newborn Screening Information!

This is exciting stuff people! IMPORTANT and exciting. It cannot be stressed enough. Newborn screening measures are SERIOUSLY LACKING in this country. Something as simple as a pulse oximetry test could save many lives, and yet, it's not done as part of a routine screening on a newborn in US hospitals! For those of you not familiar with the pulse ox, they take the measuring "device" and tape it to the infant's toe...it measures oxygen saturation levels. Many murmurs cannot be detected, or the baby is deemed to be bruised when he or she is actually "blue" (cyanotic), but O2 sats don't lie. If that baby isn't getting enough oxygen to his/her body, this will pick it up in under 5 minutes. No lie. And it's not being done. Just mind boggling.

Please read and follow this exciting new development for not just CHD, but many other defects, illnesses and syndromes:

http://www.nih.gov/news/health/oct2009/nichd-19.htm


Also, one of my Heart Mom friends is working closely with this type of research for CHD babies. Here is her latest update to our group:

For those who didn't catch it this week, the Nationa Institutes of Health announced its Newborn Screening Research Program named in memory of Hunter Kelly, football player Jim Kelly's son who died from a rare but genetically screenable disorder a few years back. The program offers new funding mechanisms - among other things - to support universal screening initiatives.

This is just one of several windows opened recently to start advancing the use of pulse oximetry to screen babies before discharge for CHD.

I meet tomorrow with an amazing group of people here in Minnesota who have offered their time and professional insights to review the landscape and create a viable opportunity to address newborn screening for CHD here and nationally.

The team includes the top cardiologists, neonatologists, pulmonologists from facilities here and officials from the state department of health. As a reminder, the recent AAP and AHA report stated that in their pulse ox study, false positive rates were just .035 percent in infants screened after 24 hours.

The test potentially can identify significant or life-threatening heart defects that may otherwise go unnoticed or at least unnoticed before a newborn is released from the hospital.

Early identification of certain defects is important, and can allow doctors to begin appropriate treatment or transfer to a specialty hospital.

The benefits of the oxygen screening test clearly outweigh the risks.

The overall cost of the test is reasonable, and is about the same or less than the cost of other newborn screening tests.

The need for additional study has been supported by a recent joint statement from the American Heart Association and the American Academy of Pediatrics, which also calls for more research to determine whether the test should become part of the routine assessment of all newborns in the United States. (Source: American Heart Association, 07-07-09)
This is what we are doing - and the path has presented itself to possibly run the pilot program inin tandem with a national pilot to screen for hyperbilirubinemia (sever, life-threatening jaundice). This could create efficiencies in cost, training and reporting for the nursing staff, while also putting both initiatives on a faster track for adoption. The doctor at Mayo who serves on the national newborn screening board has offered to be of assistance in any way.
I am excited beyond description about all of this.

I meet again next week with congressional members to tout the value of this initiative - and of course to support the Congenital Heart Futures Act. Keep you all posted. As always, PM me if you need to get in touch...

And of course - love and prayers to our families going through challenges right now.

Angel Aiden

Please pray for the family of Aiden Matthew Beers. After battling through an SVT episode that nearly took his life a few days prior to his surgery, then making an astonishing recovery from that, Aiden was called home to Jesus Friday evening. Levi and Tracy are questioning their faith right now, and rightly so. They are angry, they are grieving, they are feeling the ultimate hurt one can feel...to lose his or her own child. It isn't right. The good news is: God can handle it. He can handle our anger, our sadness, our venom. We must try to cling to Him in times such as these, but if we can't, He understands. And when we're ready, there He is, to welcome us back into His embrace. God's ways are not our own, that has been said to death...and is annoying when one is grieving, as I can attest to. Unfortunately for us humans, it is the truth.

I leave this post with some words of love for Aiden and comfort for Levi and Tracy. They are songs that I love and that I hope bring you some comfort during this time.

Godspeed (Dixie Chicks) ... you can hear this on my page ...

Dragon tales and the "water is wide"
Pirate's sail and lost boys fly
Fish bite moonbeams every night
And I love you

Godspeed little man
Sweet Dreams little man
Oh my love will fly to you each night
On angels wings
Godspeed
Sweet Dreams

The rocket racer's all tuckered out
Superman's in pajamas on the couch
Goodnight Moon, we'll find the mouse
And I love you

Godspeed little man
Sweet Dreams little man
Oh my love will fly to you each night
On angels wings
Godspeed
Sweet Dreams

God bless Mommy and matchbox cars
God bless Dad and thanks for the stars
God hears Amen wherever we are
And I love you

Godspeed little man
Sweet Dreams little man
Oh my love will fly to you each night
On angels wings
Godspeed
Godspeed
Godspeed
Sweet Dreams

With Hope (Steven Curtis Chapman)

This is not at all
How we thought it was supposed to be
We had so many plans for you
We had so many dreams
And now you've gone away
And left us with the memories of your smile
And nothing we can say
And nothing we can do
Can take away the pain
The pain of losing you...

(chorus)
But we can cry with hope
We can say goodbye with hope
'Cause we know our goodbye is not the end, oh no
And we can grieve with hope
'Cause we believe with hope
There's a place where we'll see your face again

And never have I known
Anything so hard to understand
And never have I questioned more
The wisdom of God's plan
But through the cloud of tears
I see the Father smile and say well done
And I imagine you
Where you wanted most to be
Seeing all your dreams come true
'Cause now you're home and now you're free

(chorus)

We have this hope as an anchor
'Cause we believe that everything
God promised us is true so...

We wait with hope
And we ache with hope
We hold on with hope
We let go with hope

Thirty-One/First Support Group Meeting

As I've posted under the "my info" section, I recently became a Consultant with Thirty-One (www.thirtyonegifts.com). I am excited about this new opportunity in my life, as it will hopefully give me a way to earn money while staying at home with Drew. We have been very blessed that I have been able to be home with him for nearly one year and I would like to continue to do so. I am also used to paying my own way in life and feel that I need to contribute financially to the family as well. Please consider visiting my website, as the holidays are coming up! There are tons of cute items for little girls and boys, teen girls, ladies of all ages and new Moms!!! My website is located on the right, under my picture. My first party, my launch party, is this Thursday. If you are a FB friend, you should've received an invitation this past week. Even if you're not able to make it in person, I am able to take outside orders via my website. Simply go to Order after selecting your items and it will have you choose your hostess. Select my name and place your order. The order will be submitted on the day on my party and can be shipped directly to you! Happy Shopping!!

It's My Heart - Metro Detroit News ...

Our first support group meeting will be Monday, October 26th, at 7:00pm. We will be meeting at the Plymouth Library in the Storytime Room. Please feel free to come on out, meet us and share in our common bond/lend support to one another. Also, if you simply want to attend because this cause means something to you, but you have not been directly affected by CHD, we would LOVE to have you. This is not just for those of us affected by it. In the months to come, we hope to have Adult Survivors of CHD to speak at our meetings. This first meeting will be more of a "roundtable" format. It will be pretty low key and we will be able to talk about our experience with CHD, or what drew one to the cause if he/she has not been directly affected by it. In addition, we can discuss our concerns, fears, experiences with the local hospitals/surgeons/cardiologists and what we would like to see happen as far as raising awareness about CHD and funding for research are concern.

We hope to see you there!

Fall Festival with CHM and PBS - Detroit (UPDATE!)

We just found out last Friday that Children's Hospital of Michigan (CHM) is having a Fall Festival on Saturday, October 24th at the Etkin Center in Southfield. This event will be held in conjunction with Detroit's PBS station. We are hoping to have a table there, but even if we don't, officers will be on hand with information on It's My Heart. Please come out and learn more about the services offered at the Etkin Center, as well as enjoy fun fall family activities. And, of course, come on over and visit with those of us in white "Artey" polos! (Artey is pictured above)

Details ...

DMC Children's Hospital of Michigan/Detroit Public TV Fall Festival

Date: Saturday, October 24, 2009
Time: 12:00 pm - 3:00 pm
Address:

Alex J. Etkin Specialty Center

29120 Franklin Road

Southfield, Michigan 48034

Map & Directions

An exciting event for families which will include PBS characters, cider and donuts, pediatric experts and fun activities such as a costume contest, crafts, bounce house, petting zoo, dancing and free pumpkins.

EDIT: We will not be able to attend this function after all. Etkins Center does not have a Cardiology Center, so CHM feels it's best if we simply wait until they have an event with Cardiology and/or Cardiovascular Surgery. So sorry for the late notice!!!!

A Prayer Request, Something Frivolous and Upcoming Events

First off, the most important item, the prayer request...

Please pray for Aiden B, son of Levi and Tracy. Aiden was born on October 8th with multiple complex CHDs and a slew of other issues. His doctors are not giving Levi and Tracy much good news these days, but we're all praying they're wrong and Aiden will fight through this time and show his strength to everyone. Levi is in touch with Boston (the #1 Cardio center for children) and hopes to hear better news from them soon. Please follow Aiden's story at http://www.babyaidensjourney.com/

Now, the something frivolous...

I have entered Drew in the Gap Casting Call. A new feature this year is the "Fan Favorite." Please vote for Drew to be the fan favorite...you can vote daily! You may check out his page here: http://family.go.com/gapcastingcall/entries/DrewMaggs08/914377281/. You will have to register an account with Disney in order to vote. In my opinion, he's the cutest in his category! The categories are Baby Boy/Baby Girl/Boy/Girl. Baby Boy and Baby Girl are for kids 4 and under. It seems weird to me that you have 4 year olds against infants, but it is what it is. If the judge panel picks Drew, he'll do a test shoot and then, the winners in each category will be determined from those photos. Not looking to have a vain child, but I think it would be a fun experience and, of course, my secret agenda is to bring more awarness to CHD. Oops, did I say that? Guess it's not a secret anymore...

Upcoming Events for It's My Heart - Metro Detroit:

Sunday, October 18th at 11:00am - Please join us at Franklin Cider Mill for a Meet and Greet. Cider and Donuts will be provided, courtesy of It's My Heart - Metro Detroit. There will be a tour of the Cider Mill available to those who are interested. We will be near the river, so feel free to come over and meet us. We will also have information on our organization.

Also, if you're an early riser and listen to radio, please tune in to one of the following stations to hear my segment on the Neighborhood Network Community Affairs Show:

website: Detroitcommunityaffairs.org

Station Air time Website
WDFN-A 1130am 7:00a wdfn.com
WDTW-A 1310am 7:00a 1310wdtw.com
WDTW-F 106.7 fm 7:30a 1067thebeat.com
WNIC 100.3 fm 7:30a wnic.com
WKQI 95.5 7:00a channel955.com

Wednesday, November 4th (all day) - Dining Fundraiser at Max and Erma's in Birmingham. 20% of your bill will go to IMH-Metro Detroit. Please email metrodetroit@itsmyheart.org for tickets!

Support Group Meetings!!!

We are pleased to announce that our Support Group Meetings are starting to take place! Please join us at 7pm at the Plymouth Library on the following days:

Monday, October 26th
Monday, November 30th
Tuesday, December 29th (Monday wasn't open)

We are hopeful that we will have adult survivors of CHD to come speak at one or more of these meetings. The main focus of the meetings are to lend support to those affected by Congenital and Acquired Heart Defects. Please email us at metrodetroit@itsmyheart.org for more information on these meetings. Refreshments will be served.

Thanks!!!

CHD Surgical Info

If you look to the right on my blog, under our pictures, you'll see a "button" that connects you to a site called "CHD Babies." Another CHD Mom set up the site as a source of infomation and hope for CHD families. It's really an excellent site. And I think the following page on surgeries is phenomenal:

http://chdbabies.blogspot.com/2009/08/surgeries.html

It describes all the different surgeries performed for various CHDs. It includes all of Drew's procedures: the balloon valvuloplasty, repair of ASD, and repair of pulmonic artery/valve. Drew's valve was actually left in tact, but just above it, in the main pulmonary artery, was sliced into and opened up with patch material. This is the part that is narrowed (stenotic) again...also, his leaflets are still thick, but function appropriately. We don't go back until May, so just pray that his heart grows appropriately between now and then and the stenosis remains mild. Mild we can live with...