Bonding with Sadie

It's CHD Awareness Week, which I have been actively involved with for the past three years. This year, however, I did nothing to prepare, and I have to admit, I've let the CHD Blog run far behind in posts. But it's for a good reason. I've been bonding with the very reason that brought me into the nightmare world of CHD.

Having a baby you can't hold in the early days has a huge impact on your ability to bond. Ask any parent of a premie who's hospitalized a long time, or anyone who has a child with a chronic, life threatening illness in the early days. Sadie missed out on those early caresses - I couldn't touch her for more than a week beyond brushing a fingertip across her hair without her heart racing. I didn't hold her until she was almost three weeks old. She could not tolerate touch, really, for months, unless she was bundled tightly to minimize it, and bounced to draw her attention away from the fact she was being held. It's difficult to bond under those circumstances.

And that's part of the reason I have been such a 'warrior' about Congenital Heart Defect Awareness. I felt so robbed. If she had been diagnosed, as she SHOULD HAVE been prior to birth, I wouldn't have lost as many days as she stabilized. I have felt that the lack of knowledge, the lack of simple tests, had cost me the bond with my baby. And I was pissed about it. And when I get pissed, I take action to make changes. I don't know what caused this to be my genetic makeup, but it's what happens when I'm faced with something I can't understand, or I think is wrong, or I feel I can make better.

I always felt so awful about not having that special bond with Sadie that I had with Katie in her early years. I craved those moments I'd had with Katie as a newborn - when she'd gaze up from nursing into my eyes and just stare. How she'd snuggle into me and fall fast asleep. How she smiled in those early weeks. With Sadie, it just didn't happen. Every day was a battle. I was, to be honest, disappointed. Let down. Sad.

That's not to say I don't love Sadie more than I can express. I love her so very, very much - coming so close to losing someone makes you realize how much you want them to be in your life. I would content myself with watching her sleep (when she did). Time marched on, and month by month she became a little easier to deal with - allowing me to touch her without crying. Eventually making eye contact. Hugging. Kissing. She became a fairly normal toddler - full of moxy, highly temperamental, but funny and sweet. Still, we didn't have "that" bond.

All of a sudden, three and a half years later, it has finally happened. In fact, I can almost name the moment. We went out on our first mommy-daughter date to the movies a month or two ago, and we sat. We chatted. And the communication began to grow. Now she's attached to my hip (literally, she's sitting her on the couch beside me, on my hip as I type), snuggling constantly and telling me how much she loves me a hundred times a day. And each time I tear up a little bit, so thankful for these moments that were so long in coming.

As for CHD Awareness, I will continue to promote the need for better testing - simple tests can save lives, and maybe even just one mom can have more of a bond with their baby than I was able to have. So I'll champion it. But I won't be putting the hours into it this year. It is time for me to step back and be thankful. To hang up the gloves I've had to keep on to fight for so long for Sadie, and just enjoy her and revel in my new found bond.

CHD Awareness Week Day 2, 2009

I'm totally bummed I can't make it out to CHD Lobby Day tomorrow. Sadie's got something that looks a lot like pneumonia, PLUS my lead teacher is sick at the school. Feeling a bit blue about it.

Check out yesterday's CHD Blog entry if you haven't. It's by a friend, Josie, (5 Minutes is the title) and it's amazing. If you're a parent who's ever been through a life-death situation with a child, you will totally relate.

That's all I've got in me tonight. I've got my mind on lots of people who need support and energy for tomorrow - the Reynolds family (daughter Charlotte, 3, has brain tumor) and my friend Christy and yet another big appointment for Harlie tomorrow. Send some good mojo their way.

Awareness Week

It's CHD Awareness Week again! In the past year I've met many heart patients and parents, medical staff and support groups, many of whom I know will be lifelong friends. I created the CHD Blog (check out today's entry - an amazing post by my friend Josie!) as a neutral information dissemination tool, and it's really taken off. But I wanted to do more.

This time last year I, for the life of me, could not understand why there were such paltry efforts at a national awareness campaign. I didn't get why there were so many groups, with animosity between some.

Well, now I know. I jumped in full steam last year, volunteering with a variety of groups, testing the waters to find out who was out there, what they were doing and how I could help. I worked on national efforts for cohesion and strength within the groups. I spent a lot of time trying to mend fences and bring people together. I spent even more time behind the scenes working on projects that no one else had "time" to address. And in the end, after all the work put in, I threw my hands up in frustration and stepped back away from most of the groups I'd so willingly jumped in to help. Why? What caused me to back away from something I feel so strongly about?

I've been asking myself that very question. And I think I hit upon the answer My efforts last year didn't amount to a hill of beans in the bigger picture. In the process of giving my time and energy, I encountered many negative people who diverted my attention from the reason I'm working so hard at this. And in that, momentum was lost. I wonder how many others have walked that same path - I know I'm not alone.

And so this year, I'm readjusting my focus. My pledge for the next year is to find new and innovative ways to contribute. To surround myself with positive and hopeful heart warriors like myself and to ensure that my efforts are more guided and focused, really targeting and impacting the need for awareness, which in turn will lead to greater advocacy in the health and government systems and stronger research funding. I think I'm on the right path, and feel good about that.

As with last year, I'll be posting an entry every day, CHD related, during CHD Awareness Week. This year will be a bit different from last - no long lists, no big plans. Just open talk and interesting articles about life with CHD. And to kick off the week, I'd like to share a video that's been circulating lately...

Blog Interview...

A week or so ago, I was offered a chance to participate in The Blogger Interview, and took the challenge laid down by Steve (the awesome co-blogger at The CHD Blog) on Adventures of a Funky Heart. Now it's my turn to paste here and offer someone else the chance to get in on the fun! This one is heavy on the CHD side... I'm gearing up for CHD Awareness week (Feb 7-14!). Your interview could be about anything...!

The rules: The interview(er) (me) gets to ask you five questions. You answer, I post it on my blog. You also post on your blog, FaceBook or wherever, and become the interviewee for another friend/colleague. Who wants an interview? I can do some creative questioning!! ;)

Were you a blogger before you created the CHD Blog?

Yes, I have a personal blog, Herding Cats, that I created immediately after my daughter was diagnosed with a CHD. The hospital I was at didn’t tell me about Caring Bridge or CarePages, so I winged it - I created a blog to keep family and friends informed. It was a great way to vent, to organize my thoughts and to share news without having to repeat myself. Since then, it’s grown into a sounding board and a way to stay in touch with friends and family outside my immediate area. I started and just can’t stop! It’s the cheapest form of therapy I’ve found to date.

The CHD Blog was born last year on a whim. I realized only a couple of weeks before February that there was a CHD awareness week. I wanted to do something. When my daughter was diagnosed, I felt alone in a vast sea… even the Internet couldn’t provide the answers I craved. The connections I wanted. Or a quick resource to get the information I needed. I thought that perhaps a portal could be created that was not affiliated with any organization, completely (or mostly) unbiased and for the general public’s consumption. That’s why the CHD Blog was born.

What have you learned from other Heart Moms and Dads?

I’ve learned how to advocate for my child. Coming into the world of acute care for the first time, I still held the ancient belief that the medical community knew much more than I did. While they do know more about specific diseases, organs, etc., they do not know my children. Only I can truly advocate for their needs.

I’ve also gained a support network I never knew I needed. I’m not much one for “support groups.” I don’t like group activities per se. Yet I have met incredible men and women both virtually and in person that have walked down similar paths. It’s hard to relate all of your feelings about “that” road we parents (or you patients) have been down. I didn’t even realize many of the emotions I harbored. Having friends that have walked similar paths in life really does make a difference.

What’s a routine day around your house like?

Honestly? Loosely organized chaos. I own a Montessori preschool, as well as an association management firm. I manage two full time clients (their accounting, marketing, public relations, event planning, administration, etc., etc.). I am married, have two daughters (six and two), two dogs, two guinea pigs and somewhere around 30 fish to care for. My day starts somewhere around 5:30 and ends somewhere around 1-ish. I spend some time in the preschool, a lot of time behind the computer or phone working with scientists and business professionals around the world, try to make sure to have some one-on-one time with my girls, and try to cram some volunteer work (usually CHD related) into the few remaining hours of my day.

Describe the moment that your doctor told you that your daughter had a heart defect?

It was a moment of pure, unadulterated shock. We knew something was wrong, but had thought it was minor at best. As the doctor drew a crude drawing of a heart on a napkin, his hand was shaking. He would not look me in the eye as he discussed her emergency intubation, that she needed to be medivaced out immediately, that surgery was her only option, and it was dire that intervention happened immediately. Until that moment, I had never even fathomed the possibility of a heart defect. I didn’t even know what CHD was.

In that moment, I asked stupid questions. One of the first, which I still cringe at, was if she would have open heart surgery, and if there would be a scar. Well, yes, dummy. What a stupidly naive question, so irrelevant to the life and death situation we were in. But I couldn’t connect the dots. I’d just had my daughter a few hours before, only 7 minutes after flying through the ER doors. And now they were telling me she was struggling for her life. I hadn’t had time to hold her. I hadn’t even really seen her. It was all just too much to take in.

After a long night of trying to wrap my mind around the situation and my reaction, I decided to change immediately how I was dealing with the trauma. I refused to let myself go down that “shocked” road again. My mode of operation since has been to push all emotions aside and to get analytical and realistic when faced with life-death situations. Of course, there are a lot of drawbacks to ignoring emotions and refusing to allow shock to take over - it only gives them opportunity to fester and grow, and it’s often ugly to deal with their neglected mutations after the emergency has passed. But it has helped me to become a better advocate in traumatic situations. Some people comment on this being a strength, but in fact it is not. It’s a total weakness - I admire other parents and patients that can cope with the emotional aspects of medical trauma while it is in progress.

What is your wish for your daughter?

That technology is always ahead of her in terms of treatment and her medical needs. That she lives a full and happy life. And that she never doubts for a second how much I love her. (Both of them!)

Back on the ground...

I had a whirlwind weekend complete with a very short trip to Chicago to volunteer with the Children's Heart Foundation on working on a national awareness campaign in collaboration with the newly formed National Congenital Heart Coalition. It was exciting to see so many people devoted to this silent epidemic come together, despite diverse agendas, and be able to set the initial stage to begin work on a national awareness campaign, as well as national advocacy efforts. I'm ready to roll up my sleeves and get to work!

On the lighter side of things, the trip was as crazy as any of mine... 3 hour delay on Friday on the way out, landed to find snow on the ground and realized I hadn't brought a coat, stayed in a total roach hotel near the airport (avoid PriceLine!!), drove a Chevy Cobalt (not as bad as I thought it would be) and watched a medical emergency unravel on the plane on the way home when a gentleman went into a severe seizure. Unfortunately, he lost control of all bodily functions, which is quite ummm... gross when canned together for an hour. I can only imagine how embarrassed he must have been when he came to. Thankfully we had a cardiologist on flight (he had severe hypertension which led to the episode), and we didn't have to reroute. We were escorted in once we hit the runway by the police and he was met with 3 ambulances. The end result, however, was that the front of the plane cleared out after his episode, as the stench was overwhelming. This caused problems, however, so some were asked to go up front to balance out the plane. No one wanted to. So, seeing as I am frequently faced with poopy pants, vomit and other such lovely things, I went up there, wrapped my jacket around my face (which I bought while in Chicago) and hoped for the best, not knowing if it was contagious at that time. I was relieved to later find out it was not. Hope the guy feels better and it's nothing serious.

I also had a freak-out moment of my own when faced with the fact that Sadie is a "high risk" cardiac patient that will need follow up and, likely, further treatments as she grows. Realizing that there are not enough experienced people out there who know how to deal with CHDs was a real wake up call. I know, I know, I should realize this, but when faced with it written on paper, I felt my stomach plummet. It's easy for me to think that her case is much less severe than most as I have now found myself deeply entrenched in a large social network of children with heart defects much more severe than hers (so I thought at least), but the reality is that it is still extremely serious. I've always known this, but admitting it is an ENTIRELY different matter. I couldn't sleep a wink last night thinking about it all, and was ready to get home and forget about it. As I rocked Sadie to sleep before her nap, the emotion of it all totally overtook me... I am NOT a cryer, but months and months of bottled up stuff just came pouring out. I think I need a breather from all this this week to recoup. That being said, a friend's daughter is going in for cardiac cath this week, so I know it will never be far from my mind. Please send lots of positive energy and prayers to my friend Karen and her family, but especially to little Jameson, who is one of Sadie's heart friends.

So, that was the weekend's fun for me. I was greeted at the airport 30 minutes late by Jason with an overly excited Katie and extremely exhausted and (ah, the irony) thoroughly poopy panted Sadie. The ride home was complete with high pitched screaming, Katie's exhasperating attempts to shout over her sister and Jason's general grumpy, stressed out self. Ah, home again.

Last Day!!!

It's the last day of my mega-blog-a-thon and I can not be more relieved. I learned a lot through this experience (shared on the learnaboutchd blog if you're interested), but most of all I learned what great family and friends I have that have undertaken this campaign with me. I really appreciate all of you who posted logos, referenced websites, sent encouraging emails, called, etc. I can't tell you how much it means.

This is just the beginning for me, though I won't be quite so intense about the entire effort (I don't have the energy!). I really feel that CHD awareness is vitally important to tomorrow's unborn children, to our children who have CHD and will soon be adults without experienced medical care available for their special hearts and for moms around the world. I hope you'll join me in these efforts!

Here at home, I'm finally starting to recover. I ate solids and kept them down! Hooray. It's the little things, right?!

Sadie has been in rare form all day. She's learned to climb on top of the coffee table, on the backs of the couches, throwing fits, biting the heck out of me (anyone have suggestions on that particularly lovely behavioral issue?), tore open a package of pretzels stolen from the cabinet, crunching them and spreading them into the carpet, pulled the cat's tail (multiple times), sat on Carly Sparkles (clucking like she was riding a horse) and that's just what happened before noon... she wears me out.

Thank God for her mended heart. How boring and pale life would be without her!

Darn.

So close to my goal of a blog a day, but didn't quite make it. I did put up a post yesterday on learnaboutchd, so I guess that counts, right?

Flu is still raging. I thought I was better this morning, and headed out to work in the office a bit, only to be promptly reminded about 45 minutes later that the flu had not had enough of me yet.

I am dying to get out of this house! Katie doesn't seem to have the flu. Just sore throat and slight fever. Thank goodness. Sadie's still ok. Guess I'm just the lucky one!

I promise to be back to my blogging self soon...

CHD Awareness

Sick today. Please see post on learnaboutchd.blogspot.com.

Four days to go on this silly blog-a-thon idea I had. Ugh.

Some Insurance Humor

I said I don't like to do politics. I guess I lied. Today I heard a Hucakbee speech that just plain pissed me off. So, in retaliation, I'm sharing my viewpoints in comedic formats.

When I grow up...

I found my dream job. As a kid I dreamed of being a veterinarian. Then the reality of chemistry kicked in and I lost that dream. Today I rediscovered that sky's-the-limit, starry-eyed desire again.

Pamela Divinsky, VP at Ethos JWT, (yes, part of the HUGE advertising firm JWT) provided an outstanding lesson on tapping into social responsibility to increase profits of corporations. The part that I'll take away (aside from my child-like admiration of the job she has) is that companies can no longer sit aside without taking on a socially responsible campaign, and when they do one, they must do it well. Otherwise they'll get called out. Or discredited.

Divinsky came in as an unassuming, almost mousy person at the conference. She muttered under her breath that she was surprised anyone was staying, that she'd be happy to skip her talk if we wanted her to (it's snowing buckets in Boston and everyone was taking off early trying to get out), and professed several times she wasn't very experienced with public speaking.

Then she got up on stage and POW, BANG, BOOM. Talk about an awesome presentation, an outstanding delivery and inspiration. I'm so enamored with what I heard, and the possibilities this branch of work holds for my future that I don't know what to do with myself.

This video is just one of the examples that she used in her presentation yesterday, a spot they created for a local (she's in Toronto) hospital. Check this out...




Um.... wow?! Interesting trivia on this spot... they shot that in 48 hours, and everyone except for the kids listening to the lecture were real patients, families doctors and staff at that hospital.

Sidebar for my CHD awareness friends still following along on the month-long blog-a-thon, 6 days left, hooray! Also, can you imagine what we can do if we can get our message as part of a corporations national campaign? Screw the PSAs, let's dig in to our employers (or our husbands or whoever) and get them onto our campaign. Kids causes are the #1 "seller" cause, so we should be a shoe in.

Moms Will Cure CHD

Today, I've been inspired and revitalized on the whole CHD front. My day was full of outstanding presentations at the Consumer Trends Forum here in Boston. I've learned a ton, and will have more take-homes than I think I've ever had from a conference. But this is CHD month, and I'm on this mission to promote awareness, and thus one thing is stuck out in my head.

These past few weeks I've been mulling over the whole CHD awareness thing. Why don't people know about it? Why is it a "silent" epedemic? Why can't we get more research dollars?

You know why? Our children do not have a vote. Most CHD survivors don't realize they are part of an overall picture. And MOMS are not strong enough advocates. Sure, we tell our close friends and family, maybe even a congress member, but we aren't using our greatest strengths to change the face of this daunting task.

Don't get me wrong. As parents of children with CHDs, there is nothing more we want than to find treatments, answers, cures. There is nothing more we want than to save another mother from the pain we have seen ourselves and watched our children endure. But we are discounting ourselves.

One of the speakers at today's meeting was Maria Bailey, founder of a mom-based marketing group called BSM Media. A lot of things she talked about struck a chord with me (e.g. finding out I'm a mompreneur, how moms will decide who the next president is and how much major brands want to woo us). I left with the new reality that more moms are coming who are connected, who share my values, and who work in a similar manner that I do, yet share my family-first values. We, the mompreneurs, soccer moms and SAHMS, have more power than I ever imagined.

Why does this relate to CHD? Because I think we're underselling ourselves as moms. I myself have said, "I'm just a mom" when referring to my role in CHD awareness. I've made a weak attempt at awareness. And I discount my desire for change (I want it, but can't achieve it on my own).

Here's the reality check. I'm part of a $2.1 TRILLION dollar buying power who can influence my favorite brands. My vote will change our future. My voice does matter, because it's not a voice of one, but of thousands. We have POWER, and it's time to tap into it.

Tonight I learned that we have more influence than I ever imagined. Now it's our responsibility to tap into that power to bring attention to the matters we care about most - the health, well-being and future of children and adults with CHD. It's time to erase the "silent" part of the epidemic we face and find answers. I'm fired up and ready for action. Now for the next step...

- How do we come together to accomplish changes in legislation?
- How do we join forces and change the pitiful funding for the research that will change our children's lives?
- And how do we use our buying power and leverage to influence major companies to join our fight for our children and future generations?

Bahston

Still here, still alive and still kicking on less than 3 hours of sleep in 24. I l-o-v-e my job some days.

CHD Awareness - talking about insurance today (health, that is), and trying to find other families that have been deemed "uninsurable."

Still Kickin'

It's been a long day of meetings and drama, but I'm still alive and kicking, though posting late. This blog-a-thon is going to be tough while I'm out of town.

Didn't leave the hotel today, except to go to Kinko's and back. Long day of meetings, mayhem and more meetings. More tomorrow.

CHD Awareness - visit LearnAboutCHD. Thanks!

I Heart Boston

TodayI took off for Boston. Last time I was here, I was 7 months pregnant with Sadie and didn't feel much like sightseeing. Luckily, today was a fluke warm day here in Boston (breezy, in the upper 60s) and we only had a one hour delay, so Kerinda and I had time to hit the Freedom Trail before dark.

I think the thing we both found most fascinating was the cemetery where Paul Revere, Ben F's parents, and lots of other famous dead slumber. The tombstones were crumbling to dust, but some were still intact, and we perused them for quite some time. The graveyard was surrounded closely by buildings, and the buildings themselves had gravestones on them. We were trying to figure out if the buildings were put there after the cemetery, then the gravestones replaced, or if they were crypts in the walls of the buildings.

My favorite cities in America had been San Francisco, Seattle and Vancouver, but I think I need to scratch one of those and put Boston into the top three. It's a surprisingly friendly city, and they have wicked cool accents. I love the ocean breeze flowing up the Charles River and into my hotel room window. I couldn't get enough of the colorful row houses, each one unique and defined. And, because I'm now officially a boring grownup, the history is a lot of fun to walk through.

The girls for the first time really had an issue with my leaving. Katie normally does ok, but this time she cried her eyes out all morning. It's so hard to leave that way. Sadie was a bit upset, but then quickly moved on to breaking new things, as she is prone to do. I'm feeling a bit guilty tonight for enjoying my afternoon so much, and even more guilty for how excited I am to sleep through the night. I wonder if I can make it 8 hours?!

CHD Awareness - see LearnAboutCHD for the latest.

First Sentences!

Katie, who is almost 5 1/2, read her first full sentences without any help yesterday, which included, "The fat cat met the dog" and "No he was not!" from a currently borrowed library favorite, Drat that Fat Cat. Gotta go buy that book now. I can't believe my baby is reading!! God, they grow up fast.

CHD Awareness, check out the Children's Heart Foundation, the only group I know of that puts 100% of their efforts to funding research on congenital heart defects. They've raised 2.3 million since 1996. It seems we should be able to do more.

Social responsibility is a MAJOR marketing tool these days. Next week at the conference I'm running, one of our speakers is from Ethos and will be focusing on this very subject. I can't wait to learn more and see if we can find some ways of enticing some major companies into campaigning for CHD. Big ideas, but worth the thought.

General Update

I'm wiped out from work today... leave for Boston on Monday and have miles to go. So, today's blog is posted on the CHD awareness site. Check out Makenzy's story - she's 8, and has a sister who has CHD. Her story is very touching, and one many kids can relate to. I'll write something soon about Katie's general reactions as well, but don't have the time/desire tonight.

On the home front, I took Sadie in for what I thought was a simple ear infection today. It's not. Looks like there's something going on behind the ear drum. We're going to watch it and see what happens over the next week or so, but the dr suspects the ear drum may burst because of the pressure. Basically (gross... weak of stomach skip this), there's a lot of puss built up behind the drum, as well as tissue. The pediatrician thinks it may be another genetic anomaly that is the root of this (the tissue malformation). No one has ever mentioned it before, in the 3 times in the last 4 months we've been treated for ear infections.

Interestingly enough, he said I should sue my OB. I won't be, but it was reassuring for another doctor to tell me that I was neglected, my desire for more information was denied, and that it wasn't right. No other doctor I've talked to will admit that. We had a half hour discussion about the failure to be able to obtain insurance for Sadie, and his comments included how broken our health care system is, and how CHD is so severely overlooked - there's no "money" in it, and the children aren't old enough to vote on issues, parents overwhelmed. It was comforting to find a doctor who feels exactly as I do on the politics of healthcare, the state of the American health system and CHD awareness in general.

Anyway, the Sadie issue is wait and watch. He said tubes are likely, but that they couldn't be done right now based on what he saw. He also said he hopes and doesn't think it will affect her earing. He also mentioned it could have a lot to do with her behavioral issues as well.

Katie had an awesome day. She came home with 40 valentines from her friends, which we had to go through individually tonight. She's bouncing off the walls on a sugar high like I've never seen before. Gotta LOVE it when preschools serve sugar before sending kids home. Thanks.

Happy Heart Day!

Hooray!!! Today is the last day for lists of 7!! Please check out my friend Christy's post on the LearnAboutCHD blog - it was awesome of her to take the time to write it!

I hope everyone had a super Heart Day. I've never been one for the holiday myself, but it took on new meaning this year as I set out on the marathon CHD awareness campaign. So, for my final personal list of 7, I'd like to share what I've learned this past week as I've embarked on this adventure:

1. I'm surrounded by love. Up to my ears in it. And it feels GREAT! I have received so many phone calls, emails, shout outs and woop-woops from friends and fellow CHD parents. Everyone should do this once a year just for the warm fuzzies you get from realizing that other people care!
2. I'm lucky to have a kid with CHD. Don't get me wrong. I hate that Sadie had it, and would not wish it on anyone. But because she did, my eyes have been opened to a need I had no clue existed.
   
3. Any schmo can make a difference. I managed 400 unique hits yesterday on the LearnAboutCHD blog - something I started on a whim because I couldn't really find anything that brought the information together in one place without begging for money. Who'd have thunk it would take off like that. If I can do this little bit, then imagine what a devoted organization or company could do.
   
4. I have awesome family and friends. You know who you are. Jumped right in and started campaigning beside me, whether posting something on your MySpace page or blogging along side, thank you!!
5. Lists of 7 are NOT the way to go next year. Too much work. But I did like the shiny logo. Sparkly.
6. Sharing Sadie's story is OK to do. Honestly, I was a bit ashamed, embarrassed, and emotional about the whole Sadie heart experience. I shouldn't have been. I couldn't do a thing to prevent it. I just didn't want people to see us as "different." I didn't want them to treat her differently. So I simply didn't talk about it much, except with my closest friends and family.But I feel so much better now that I know there are hundreds of other moms out there, just like me, who feel the same way at some point and time.
   
7. Sadie is a rock star. At first I was worried about drawing attention to her. But she loves to check out her newspaper mug we stuck up on the fridge last week, and has proven she's a total diva in progress.

7 For 7: FAQ From the AHA

7 Frequently Asked Questions
Taken from a fact sheet provided by
American Heart Association
www.americanheart.org/children
with my personal comments and reactions

The American Heart Association (AHA) has a love/hate relationship going on with the CHD community. They do provide some research funding for CHD (they're actually the #2 funder in the US according to one of my sources). However, their main focus lies on adult heart health, with campaigns for women's heart health, stroke awareness and childhood obesity taking center stage on their advocacy front. They neglect to even address our children unless we kick and scream to be heard.

Some of the CHD community have given up on them entirely. I have not, because the research they do on a valve in an adult may be applied to a pediatric patient someday. They have the potential and the funds to reach many more people than any of the plethora of CHD support/advocacy groups out there. The next highest contributions to research are from the Children's Heart Foundation, which raised 2.3 million in 2-3 years. In case you're not involved in the research community at all, it's a mere spit in the bucket.

So, I think we have to find ways to work with them. They do have some information worth sharing. They simply need to be educated, just like our obstetricians who keep missing all the warning signs, our technicians who pass over patients in one or two ultrasounds but never really see the heart, and our friends, family and loved ones. That being said, I do have some comments to their "FACT" sheet they posted online. So, I thought I'd share them with you and complete my second-to-last 7 For 7 post for the year (hooray).

1. What is a congenital heart defect?
   Congenital heart defects are structural problems with the heart present at birth. They result when a mishap occurs during heart development soon after conception and often before the mother is aware that she is pregnant. Defects range in severity from simple problems, such as "holes" between chambers of the heart, to very severe malformations, such as complete absence of one or more chambers or valves.
   
   Sadie had one of the more severe defects. The majority of children who have heart defects have narrowing of the arteries or small holes in the heart, which are easily corrected, outgrown or not overly dangerous. It is believed that most defects occur between 6-10 weeks of gestation. This does nothing, however, to assuage a mom's guilt. I'll forever feel like I did something wrong that made Sadie's heart form unnaturally. Was it the fertilizer I used? Was I failing to get the supplementation she needed (folic acid and iron are both suspect in heart defects)? Is there something wrong with me that I passed to her? They're all silly, but all things that I think most mom's think, so that's why I share these über private thoughts.
   
   
2. Who is at risk to have a child with a congenital heart defect?
   Anyone can have a child with a congenital heart defect. Out of 1000 births, 8 babies will have some form of congenital heart disorder, most of which are mild. If you or other family members have already had a baby with a heart defect, your risk of having a baby with heart disease may be higher.
   
   The number is actually (according to the CDC website and based on average births in 2005) 1 in 103 are born with birth defects in the US. It's believed that that rate could actually be higher on an international scale.
   
   One interesting conversation I had in the last week or so was with two other heart moms, during a play date. Somehow the conversation came up that we had all had miscarriages. Does this play into it? We began to wonder how many other CHD moms had also lost children before going full term. I haven't found any research out there that provides any answers.
   
   
3. How many people in the United States have a congenital heart defect?
   Estimates suggest that about 1,000,000 Americans have a congenital heart defect. Approximately 35,000 babies are born with a defect each year.
   
   Ah, the AHA. Wrong numbers again. The CDC says 40,000 are born. It's been interesting these last few weeks as I've come across adult survivors of CHD in my adventures in advocacy. It turns out that adults often end up relying on pediatric cardiologists, because there simply is NOT enough research out there to support care for CHD patients as they mature. It's a whole other CHD battle that I'd never even considered... what sort of care will be provided for Sadie when she grows up?
   
4. Why do congenital heart defects occur?
   Most of the time we do not know. Although the reason defects occur is presumed to be genetic, only a few genes have been discovered that have been linked to the presence of heart defects. Rarely the ingestion of some drugs and the occurrence of some infections during pregnancy can cause defects.
   
   No, I didn't drink while pregnant (well, a half glass of wine twice in the 9th month, weeks apart, if that counts); No, I didn't smokem da peace pipe. Didn't sniff glue. Didn't snort or intake anything. I ate healthier than I normally do (I think all moms do), took all my prenates, followed the doctors orders. But Sadie still came out with her heart plumbed backwards. I may never know why. I hate some of the looks I get sometimes when I talk about her defects. I can see some people judging. Maybe some of the analysis of those looks are in my head, but I don't think it all is. I've even had a few brazen individuals ask what caused it. I DON'T KNOW.
   
   
5. How can I tell if my baby or child has a congenital heart defect?
   Severe heart disease generally becomes evident during the first few months after birth. Some babies are blue or have very low blood pressure shortly after birth. Other defects cause breathing difficulties, feeding problems, or poor weight gain. Minor defects are most often diagnosed on a routine medical check up. Minor defects rarely cause symptoms. While most heart murmurs in children are normal, some may be due to defects.
   
   They seem to miss the story I've heard time and again this week on one of the listserv's I'm on... diagnosis at birth. Many people have "warning signs" during ultrasounds and prenatal visits. Unfortunately, I am not the only mom who was unpleasantly surprised at birth.
   
   One friend I made since Sadie's birth had a daughter with HRHS, or only half of a heart. She was not diagnosed until birth. Her daughter passed away last year, and it was incredibly sad. Part of my sadness stems from the fact that, to this day, I know in my heart that her life could have been saved by that pre-birth diagnosis. This is part of the reason I'm out on the renegade CHD blog-a-thon this month.
   
   
6. How serious is the problem?
   Congenital heart defects are the most common birth defect and are the number one cause of death from birth defects during the first year of life. Nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancers combined. Over 91,000 life years are lost each year in the US due to congenital heart disease. Charges for care exceed 2.2 billion dollars, for inpatient surgery alone.
   
   This is the part that annoys me with the AHA. They admit it's the #1 cause of death due to defects in infants (1 in 43 children are born with defects of some sort). They admit that it's a killer. They admit that the cost of care is astronomical. But they ignore our children. Hopefully they will hear the CHD parents and adults of this world and change their minds... our children, our friends and our loved ones deserve the attention and advocacy we so desperately need.
   
   
7. Are things improving?
   Definitely. Overall mortality has significantly declined over the past few decades. For example, in the 1960s and 1970s the risk of dying following congenital heart surgery was about 30% and today it is around 5%.
   
   Sadie is one of those statistics. Her heart surgery was first put into use 25 years ago. Her heart is "fixed" most likely. I can not wait until the day that I read of fixes for HLHS, TA, and all the other life-threatening CHDs out there. It's just around the corner if we can get enough funding and awareness going!
   

7 For 7: Strangers Who Saved Sadie's Life

Today's inspiration came from a phone call I received this afternoon from LifeNet Health, the donor service that provided the tissue that was grafted into Sadie's heart. They wanted to use a thank-you note I'd written in their newsletter - a note that had taken me over a year to gain the courage and strength to write. With that in mind, I wondered, not for the first time, how many strangers have made Sadie's life possible. So, for today's post...

7 Strangers Who Saved Sadie's Life

1. The Unknown Organ Donor. Someone's life was lost, and because of him or her, Sadie's life was saved. A piece of his or her heart is now beating as part of Sadie's heart. It's almost too much to think about.

2. The Ambulance Driver. He was supposed to get off hours before he took Sadie on her life transport from the hospital she was born in to UVA, where she had a atrial septotomy to save her life that night. Before he left, I had to sign papers for him. As I signed them, I asked him to get her there safely. He squeezed my hand, and with tears in his eyes said he would. And he did.

3. The PICU Nurse. Actually, there was a whole parade of nurses that saved Sadie time and again. From the first nurse I met, who had been up all night with her, trying to get her vitals on an even keel, to the last one I said goodbye to, who hugged Sadie and wished us luck. They don't get enough credit for all they do.

4. The Unknown Blood Donors. Sadie had so many transfusions during her stay in the hospital that I lost track of them. I know there were a minimum of six. Because the blood bank requirements would not allow us to donate blood (we would need to have it screened prior to its use, and there was no time for it), we relied on the life that flows through other people.

5. The PICU Residents. Overworked, underpaid and sleep-deprived, they save lives every day in pursuit of their careers. I once watched 6 of them surround Sadie's incubator, trying to determine what cocktails they could concoct to save her life "this time" and was scared that there wasn't an attending present. I did not know a single person's name. I still don't. But they poured their hearts and minds into saving that little girl that night.

6. Dr. Albrecht, our cardiologist. No longer a stranger to us, he was called to our hospital when she would not "pink up." He diagnosed her, and sent her on her way to the life-saving procedure that she needed. It just so happened that his specialty is TGA. It just so happened that he was on call that night for Bon Secours (we didn't have a NICU at the hospital she was born in). Even he is astounded by the way that it turned out that he was the person there, and right in the nick of time. Every time he sees Sadie, and comments on how the stars were aligned that night so that she could be with us today.

7. Jatene and Mustard. In 1975, Dr. Jatene succeeded with the first arterial switch operation for the type of defect Sadie had (Transposition of the Greater Arteries). The Jatene procedure, or arterial switch, was pioneered by Canadian cardiac surgeon William Mustard and it was named for Brazilian cardiac surgeon Adib Jatene, who was the first to use it successfully. Twenty five years later, my daughter is "fixed" because of their research. This is why advocacy is so important - because awareness of heart defects will lead the public, government and corporations to fund research. And research can and does lead to finding ways to repair more hearts.

7 For 7: Why I'm Happy

I hit a brick wall with an overload of work, CHD stuff, kids, colds, etc. today. Luckily my friend Karen has been kind to step up to the plate and take on today's 7 For 7!

7 Reasons I am Happy to be a Mom to a Child with CHD.

No parent is happy to receive a diagnosis of CHD, but CHD is not a death sentence. For today's post, Karen Ward shares 7 reasons she is happy.

1. I don't sweat the small stuff any more (or as much)
2. I snuggle a little longer at night when I tuck my kids in
3. I have met some WONDERFUL people
4. I have a stronger faith and better relationship with God
5. I am more thankful for what I have and have found that I want less
   
6. I have found strength that I never knew I had
7. I appreciate life so much more

Thanks for sharing your 7, Karen!