My friend Amanda posted some of the random search phrases people had used to find her blog, and I found it greatly amusing. So I decided to dust off the forgotten analytics stuff I'd installed for this site and check out who'd been here, and how they got here. It's wierd who's out there watching. And reading. I need to quickly banish it from my mind, or I'll never post like my normal self again. Even stranger is the number of hits I get from search engines... and how people land at my little piece of cyberspace. Here's some of my favorite random searches people that caused them to land here...
"a hokie is not a mercenary"
"c'mon barbie let's go barbie"
"correct dosage of methadone for fish"
"cow attacks" and "maymont cow news"
"busiest time of day at walmart" (man, did they pick the wrong site!)
"stabbed with an iv needle from cats"
"the hand is quicker than the eye"
"so what is reality, really, at 32,000 feet"
"invite preschool class to party with me"
"curly tail pitbull freak"
Can you imagine their disappointment when they landed here?!
Friday, February 29, 2008
My friend Amanda posted some of the random search phrases people had used to find her blog, and I found it greatly amusing. So I decided to dust off the forgotten analytics stuff I'd installed for this site and check out who'd been here, and how they got here. It's wierd who's out there watching. And reading. I need to quickly banish it from my mind, or I'll never post like my normal self again. Even stranger is the number of hits I get from search engines... and how people land at my little piece of cyberspace. Here's some of my favorite random searches people that caused them to land here...
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!
Thursday, February 28, 2008
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...
Tuesday, February 26, 2008
Need I say more?!
I woke up Saturday morning in Boston with my throat raw at 4:00 a.m. I figured it was from playing outside in the snow the night before with only a light jacket on (totally didn't pack right for Boston), so drugged myself with ibuprofen and coffee and headed to the mall for last minute souvenirs. Shortly thereafter, the rest of the flu bug made itself known.
The flight home was uneventful (thankfully) and the kids and the rest of the zoo at our house were most welcoming. I however, just wanted to curl upstairs for some shuteye. Not happening.
Fast forward to today... been battling a 101 temp all day, chills, angry throat, angrier bowels and a raging headache. Katie was great all day - played on her own often, and tried to entertain Sadie from time to time. Sadie, on the other hand, is a teething banshee who was not having anything to do with anything I wanted her to do today.
Whatever happened to sick days?!
Sunday, February 24, 2008
I have the best reason I've ever had to get my butt back in shape. My friend Christy has a precious little girl named Harlie, who was born with more anomalies than anyone could ever anticipate. As you can imagine, her family faces incredible bills to help Harlie to be able to grow and thrive.
James River Grounds Management has created a fundraiser for Harlie as part of the Monument 10K here in Richmond. If you're willing to walk or run it, or would like to support me to do so (yes, my fat butt is going to do it), let me know or register using this link!! Here is the invitation letter...
January 29, 2008
Dear Valued Partner,
Whether we are ready or not, 2008 is here, and James River Grounds Management has an important New Years resolution that involves your support! On April 5th over 25 of our staff members will be running (or walking) in the Ukrop’s Monument Avenue 10K. In alignment with our resolution of giving more of ourselves to our community, we will be running in honor of a very special little girl.
We would like to tell you about Harlie Caroline Holton. Harlie was born on September 25, 2006. Her parents knew she was going to have challenges, but no one was prepared for the road that lay ahead. Harlie was born with an exhausting list of birth defects. The most emergent being a complicated heart defect called Congenitally Corrected Transposition of the Great Arteries. In basic terms, her heart is backwards. She had her first open heart surgery at just four days old, her second at six months, with a third to be at three years old. In addition, Harlie was born with an underdeveloped lower jaw and missing bones, forward low set ears, a dysmorphic left ear with no canal, left eye defects, vertebral anomalies, missing ribs, misshapen skull, anoperineal fistula and a lung defect that required the removal of most of her right lung. This is just what has been uncovered so far. Harlie has undergone seven surgeries and spent over four months in hospitals. This spring, she will face her eighth and ninth surgeries, as doctors work to stop her chronic vomiting so that her jaw can be reconstructed. The correct jaw construction will allow her to breathe and swallow normally thus eventually eliminating the need for a tracheostomy tube and feeding tube in the future. In spite of everything, she is sweet, happy, smart and beautiful!
What is most moving about Harlie’s situation is that her parents (who don’t ask for anything) have the most amazing attitudes toward these challenges. Their outlook has been absolutely inspirational to all of us here at James River. When reading the above list of challenges they have faced, it would be easy to understand how a parent in this situation could feel a little angry or cheated. But not the Holton’s. Not only is Harlie a blessing to them, but they truly feel honored to have been given the opportunity to raise her. The following is an excerpt from Christy Holton’s blog dated 1/20/08:
“…one thing I’ve started to notice more and more – is that the ones that have been honored to raise these special children feel so lucky, so blessed. How can that be? We deserve to feel cheated and bitter and angry! Well, okay, we do feel those feelings. But, more than that, we feel blessed and grateful. I find that so amazing. Those that have never spent one night in the hospital with a child recovering from life-saving surgery should feel like that. Those that have never had to learn about a rare medical condition, surgery, birth defect, how to be a nurse for their child, etc. should feel like the luckiest people on earth… I am incredibly thankful. Every single day Harlie completely amazes me. Now isn’t that something?”
We think it is. Caring for Harlie is more than a full time job. The equipment and medication necessary to keep her nourished and safe are unbelievably expensive. The surgeries that she has undergone and those that she will continue to face throughout her life will require her parents and older brother Murphy to sacrifice greatly. Furthermore, the family will eventually be required to travel out of state in order to receive the medical care that Harlie will require. In Christy Holton’s own words… ”I fully expected to lose my daughter, but then she was born and she had so many more problems than we ever imagined, yet she was so strong and surprised everyone with her will. I am truly honored to be her Mother. She is worth every ounce of effort we have to give to keep her safe and sound. She has changed our lives forever.”
As a tribute to Harlie and her family’s amazing spirit, we at James River Grounds Management are privileged to run (walk) for her benefit. What we ask of you is to make a donation to the Harlie Fund, a legal trust set up for her ongoing care. For every dollar raised, James River will match the donation.
Please make your check payable to The Harlie Fund.
Mail to: The Harlie Fund c/o James River Grounds Management, Inc.
11008 Washington Highway
Glen Allen, VA 23059
Please try to send your donations by April 3rd. We would like to honor the family with all the donations and a list of donors after the race on April 5th. For more information on Harlie, please check out her website. For more information about the donations or the race please contact Cerise Estep, 804-550-3500. On behalf of the staff at James River, thank you in advance for your generosity in supporting this amazing little girl.
Maria P. Candler
Saturday, February 23, 2008
Friday, February 22, 2008
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.
Thursday, February 21, 2008
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?
Wednesday, February 20, 2008
Tuesday, February 19, 2008
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!
Labels: CHD Awareness
Monday, February 18, 2008
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.
Sunday, February 17, 2008
My sister Kerinda wrote this, and I wanted to share a portion here. Thanks, Kerinda, for sharing the experience from your perspective!
I entered this world as Kim's 9lb 1oz, broken collared, colicky screaming little sister. Life for us began in a very different way, and I’m told that I made it my mission to make sure everyone around me knew that it was different and exactly what I thought about it. We grew and before I could blink, she was getting married and starting a life of her own. I was soon flew the nest and was out on my own when I was 19. At 20, I became an aunt. Being single and very naïve, I was amazed at the miracle of birth, the tiny life that I held in my arms, and the absolute wonder of my infant niece Katie. She was gorgeous. She was so cute, little and incredibly snugly. I blinked again and she was 2, another blink and she was 3. I was so lucky to live near by and hardly miss a day and I didn’t think a more perfect child existed.
Then Sadie arrived. It was the scariest phone call I ever received, fearing for not only my sister- my soul- but more so for her baby. It was so fast, all the phone calls, not being able to leave and go to the hospital when I wanted, updates not soon enough, constantly worried, I couldn’t seem to calm down.
When I finally got to the hospital, my heart sank to the center of the earth at the sight of her. Cords looked to be thrown on top of her like snakes on Medusa’s head; they were everywhere. There wasn’t a spot on her that didn’t have a tube, a band aid or a monitoring patch. My sister looked fatigued but somehow determined; more so than I had ever seen any human being. I felt so angry, scared and mostly confused as to what was actually happening.
Then there was the night I got to stay with her alone. Weeks into this nightmare, my sister and brother-in-law were exhausted and desperately needed a break, and it was their Katie's 4th birthday. I felt my heart leap when they asked ME to stay for the night.
The first few hours were okay. I watched the nurses come in and out, checking monitors, fidgeting with tubes, squeezing bags, and fuss over the amount of hair this baby had. I tried to memorize everything in the room and read each monitor and guess at its function- but I couldn’t keep my eyes off of Sadie too long. Every breath brought hope. Every delayed breath brought irrational fear.
Late into the evening, an IV had slipped out of one of her hair-width veins and formed a huge, fluid-filled blister. God I was mad. How did this happen? It’s not like she’s moving all around to have this “pop” out- she was pretty much comatose. Where’s the nurse!? Where’s the nurse that initially put this in to begin with? Lights flooded the room, machines started beeping louder and louder and there seemed to be a sea of white jackets in a 10x10 foot room. Then came the most terrifying noise I’ve ever heard. A long constant steady beep.
The next sound was silence.Every pore on my body seemed to be on fire. My eyes were dry from not blinking. This was a dream or I, myself, had died and this was hell or purgatory or something worse.
Sadie's screams broke the silence and I realized that no silence had ever taken place and I had unknowingly blocked any noise I heard after that one, steady, long beep. She was breathing. The nurses were still trying to “find a vein.” I got annoyed and wanted to intercept and help so badly. Three of the nurses left and there were three continued to hover.
Getting the nerve to look down- expecting to see something completely alien to my eyes, I saw Sadie was red and blue with rage. She was kicking and fighting them so hard. How this little baby, on all those drugs, was capable of even crying was beyond my knowledge. Two nurses were having to holding her down. It seemed so savage. In shock, I found a pacifier and touched her sweat-soaked head and began to talk to her. I told her how proud I was of her, how I would always look to her as my strength, my hope and would look fear in the face- just as she was then. But I was still getting so upset and I was desperate trying hold back my emotions to keep my voice strong and steady.
Two of the nurses had been switching places from holding to “finding” and both were overcome by this seemingly endless search. They stopped for a second, and I kept talking. She seemed to be calming down. At least she wasn’t purple with rage at the moment.
The IV still had to be put in. The inside of her tiny thighs, the top and bottom of her feet had been stabbed endlessly without luck. It looked like she was getting used to the pain.... and I finally started to freak out a little. The nurses were frantically looking at the monitors and I could see from their expressions that it was crucial to have this needle find a vein.
Then I heard them say that they wanted me to help. ME. I was asked to help hold her down, keeping her pacifier in her mouth and her arm from knocking out a different, perilous looking IV. Having lost track of the number of times they stabbed her before, I started the count again.
Three pokes later, the room began to calm and the drone of the steady beeps were welcomed again.
I felt ill but didn’t allow the thought to remain in my head for long. I had no complaints to bring to the table. In fact, I didn’t have a single thing in my entire life remotely comparable even to the last 30 minutes Sadie had fought through.
The rest of the evening was mostly, thankfully, uneventful. I couldn’t stop staring at her, watching her freshly cut skin beat from the thump of her determined heart.
Days later she went home and the drug withdrawals came along for the ride. The rest of the family was settling in, but exhausted. Screaming filled their heads, their house, their cul-de-sac and what seemed to be all of Central Virginia. Day in and day out there seemed to be no rest for Sadie's family. Swaddling and rocking and bouncing were what occasionally settled the savage beast-child. Dark circles found the best place to reside and quickly settled onto three faces. Katie was tired, somewhat jealous, but mainly the greatest big sister. She’d get close to Sadie in her swing and tell her it’s was ok, and how much she loved her. Kim and Jason were overcome with exhaustion and work-related stress. I tried to offer my help and the one or two nights that I relieved them, I was shocked how Kim, Jason and Katie had adapted and adjusted to that sort of hectic lifestyle. Weeks later the withdrawals subsided and Sadie's personality emerged.
Now Sadie is into EVERYTHING. I my job at an optometrist's office and started work for Kim’s business, and was around the girls every day. Katie is growing like a wild fire and Sadie’s scream has become a well practiced, banshee-like siren noise. It's great. I can’t turn my back for 10 seconds. No- I seriously, literally mean 10 seconds. Crawling was fun... but then the walking thing happened (UGH). And if that wasn’t fun enough, teeth grew into the fun zone. Yea! Of course it couldn’t be one at a time, but 1000 at a time instead!
As they grow, so do their personalities. Goodie for me – I have Katie, who wants constant attention, but even better that I have Sadie biting me and shoving Katie to have me to her self. She makes it very clear that I am her beef jerky and NOT Katie’s. It’s an endless war.
Everyday I spend time with the kids, and everyday I learn something new. Sadie is a spit fire. If I wasn’t in love with her Tin Man “icon,” that we've chosen to represent her, I’d somehow incorporate spit and fire into the next tattoo I get.
Katie is a total mush-ball. It’s hilarious to watch her freak out and “awwww” over a dead moth. But her in-tune nature makes me daydream that she will become a veterinarian. We all have decided that Sadie will be some sort of extreme sport junkie, as she loves to play "stick the hand in the pitbull/German-shepard’s mouth" and stand on chairs. (Wise investment Kim and Jason… “but noooo, Katie wanted a puppy”!!)
It’s a never ending, extravagantly fun, fast paced house hold. Need a heart attack? Come on by for a visit!
I took the Katie and Sadie to the Dollar Store recently to buy a ton of crap that Kim will later scold and swear me for. Then I took them to the park, only for Sadie to immediately pick up handfuls of mulch and offer them to anyone within toddling distance. Katie found a friend in about .00000019 seconds and I had to laugh at them needing to scream- just because. When it was time to leave and I was putting Sadie into her car seat when she decided that “anytime’s a great time to throw a fit.” Full-fledged, screaming tantrum. Not being the Mom, I don’t smack, but often have a little “Kerinda-devil” pop onto my left shoulder and say “Go ahead, one little POP on the butt would do her good. I won’t tell!” Instead I simply smile and look at her and say “Aren’t you glad that you’re not MY kid?”
I got them home and made a bottle for Sadie to go down for a nap. She threw herself on the floor beside me, screaming, then pulled at my jeans and found the right spot to bite as she decided that I wasn’t paying enough attention to her. *Ouch.* I finally got her into the rocking chair with a bottle. Katie ran into Sadie’s room just to tell me that she loved me. She left the room and Sadie and I settled again.
Before Sadie took the bottle, she looked at me and said “Ni-nah,” her name for me. I thought to my self that I was so lucky to live near by and hardly miss a day and I didn’t think a more perfect child existed.
Saturday, February 16, 2008
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.
Friday, February 15, 2008
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.
Thursday, February 14, 2008
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:
- 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!
- 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.
- 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.
- 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!!
- Lists of 7 are NOT the way to go next year. Too much work. But I did like the shiny logo. Sparkly.
- 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.
- 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.
Wednesday, February 13, 2008
Taken from a fact sheet provided by
American Heart Association
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).
- 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.
- 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.
- 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?
- 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.
- 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.
- 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.
- 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!
Tuesday, February 12, 2008
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...
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.
Monday, February 11, 2008
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.
- I don't sweat the small stuff any more (or as much)
- I snuggle a little longer at night when I tuck my kids in
- I have met some WONDERFUL people
- I have a stronger faith and better relationship with God
- I am more thankful for what I have and have found that I want less
- I have found strength that I never knew I had
- I appreciate life so much more
Sunday, February 10, 2008
Today's 7 For 7, features just a few of the stories that have been shared with me by my newfound CHD friends, through this blog, or online. You will not stand up from reading this post without your heart feeling lighter!
Throughout my life, I've always worked to overcome shortness of breath, becoming tired, and all of the other symptoms that go along with this defect. I realize that I push myself further than anyone else pushes me.
Christy H's Story. At 16 weeks pregnant we learned through an ultrasound that our daughter had lung issues. At 23 weeks, we were shocked and devastated to learn of her heart defects. Between the two, she was given a 5% chance of survival. Despite the odds, my daughter, Harlie, was born on September 25, 2006.
Harlie has a CHD called Congenitally Corrected TGA and three other heart defects that complicated matters and forced the surgeon to do a three operation “repair” to re-plumb her circulation. I have been told that her heart will last her about 30+ years and that after that we will be looking at a transplant.
In addition to her heart defects, Harlie also has Goldenhar Syndrome (an asymmetrical craniofacial syndrome). She has an underdeveloped jaw and missing bones, low forward set ears, with a dysmorphic left ear and no canal, many vertebral anomalies, left eye anomalies, misshapen skull, anoperineal fistula, and a lung malformation that required the removal of most of her right lung.
Harlie is now 16 months old and has just started to crawl. She has a 20-word vocabulary in sign language. She breathes through a tube in her throat, called a trach. She eats through a tube that was surgically placed in her stomach. She’s had seven surgeries and has spent over four months in hospitals and she’s just getting started.
Despite all of this, Harlie is amazing! She’s smart and happy and we think that she’s quite cute. She has such an agreeable personality and just seems to go with the flow, whether she’s at home or in the hospital. We are very thankful that we have her.
Harlie's heart, lung, airway and feeding issues are pretty overwhelming. But I try to focus on what’s good and be thankful for those things. I try very hard not to think too much about her heart or her lungs. I see children running and playing everyday and wonder if Harlie will be able to do that. I try very hard not to think about what it will be like when she realizes that she looks different. Or the first time she comes home crying because someone made fun of her. We are a very vain society, and that will make parenting her much more challenging.
But worrying about all that is a waste of energy – energy I need to just get through each day. I do my best. I take very good care of her. I make all the necessary appointments with her 14+ doctors, I got numerous opinions until I found the right doctors with the right plans for her. I give her all her medications as prescribed. I’ve learned CPR and she wears an oxygen and heart rate monitor when she sleeps. But, in the end, despite all my efforts, I cannot control how her heart functions. I just hope that it beats like it’s supposed to and that it doesn’t stop. I hope that she never gets a plug in her trach that blocks her ability to breathe. I hope that she never pulls the trach out (again! – yes that was a close call). I hope I never have to call 911 again. I hope that she will know that her care was never too much for me and that she is worth whatever I have to do to keep her safe and sound. I hope that I can continue to be the strong mother I need to be for her. And I hope that she will know that she has made me the happiest mom on the planet.
Today, Sharon is 23, and a marine wife. She leads a normal life with a daughter of her own, who has a clean bill of health. Two adults have told me in the last week that they had never met any one else with CHD. Sharon is one of them!
We were sitting in the doctor’s office and the cardiologist began explaining everything. Our baby has Hypoplastic Left Heart Syndrome. To this day, I don’t remember that doctor giving us much, if any, hope. But I don’t remember much from that conversation. The one thing I do remember was we were told to think about aborting the baby. After many tears and prayers we decided to continue with the pregnancy and do everything we could for our baby.
Jameson was born on October 13, 2006. When she was four (4) days old, she had her first open heart surgery. The next couple of months were extremely difficult. Jameson was stable but, by no means, was she a healthy new born. She struggled to eat and thrive. She had her second open-heart surgery at 4 1/2 months. The recovery was much quicker this time. The best part was she was crying, crying because she was hungry and wanted to eat! Her third, and hopefully final surgery will be in April.
Every month Jameson has grown stronger. She is one now and is such a wonderful baby. She sometimes gets winded when she is crawling or moving around but other than that, the scar that is hidden under her shirt is the only proof of what this little girl has been through.
Parents deserve to believe their child has a chance. Had we followed the doctor’s advice we would not have our beautiful “Little Champion.”
Misty's Story. My CHD story begins on New Year’s Day, 2005 when I found out I was pregnant with my 3rd child. My pregnancy was pretty normal. All of my ultrasounds were fine and there was no cause for concern, so we thought. Sydney was born on August 24, 2005. Her APGAR scores were 9 and 9. Everything looked good until the pediatrician came in and checked her out and heard a murmur that was “slightly louder than what we like to hear” and called in a pediatric cardiologist, Dr. Albrecht.
At 4:30 pm that afternoon, Dr. Albrecht came into my room with a nurse. I was there by myself taking a nap and waiting for my newest little girl to be able to come to my room and get to hold her. I’ll never forget what he said. “Your daughter has a problem with one of the valves in her heart and I have called a transport team from UVA Medical Center to come and pick her up and transport her there. She will have surgery tomorrow morning.” Sydney has Aortic Stenosis (AS). Dr. Albrecht advised me that her Aortic Valve was a bi-cuspid, instead of a tri-cuspid, valve and was barely functioning and letting very little blood out of the valve to the Aorta. After he went over everything, he sent the nurse to bring Sydney to my room so I could say my “hello’s and goodbye’s”. My husband called his parents to go pick up our other 2 children and bring them to the hospital to meet their new little sister before they took her an hour away to prepare her for the surgery the following morning.
The next morning my husband called to let me know that they were getting ready to take her back and that she had so many tubes and wires coming out of her that the only place that you could touch her was on her head. At that point, he started to break down, again, and I began falling apart, again. Two hours into her procedure, we received the news that everything went well, she had had two blood transfusions, and she was going to be ok.
When I was finally released from the hospital and able to go see my daughter two days after her birth, I found her in her little bed with an intubation tube and many tubes and wires attached to her. Since that day was my birthday, Steve’s parents brought our two older children up to the hospital to see their sister. I didn’t want them to see her with all of the tubes and wires, but someone brought them back before I could say anything. What was amazing was that when she heard them start talking, her heart rate stabilized, her respiratory rate normalized and her blood pressure returned to a normal state. It was incredible.
Today my daughter looks like a normal 23 month old, but she is not a normal little girl. There are things that she will have to go through that ‘normal kids’ won’t have to do. Besides the future surgery(ies) to open and eventually replace her aortic valve, she won’t be able to do some sports that she may want to do and she will, most likely, have to take medicine every day of her life. Her heart will never be normal.
Joshua developed severe blood infections after his first surgery, but miraculously pulled through, and his parents were able to bring him home almost two months later. His second open-heart surgery took place when he was 5 ½ months old, and he went home five days afterwards. He had his third surgery, the Fontan, when he was three. This surgery was particularly hard on the family as they had had over two more years to learn to love Joshua, and they knew there was a possibility he might not come home. However, Joshua also made it through this surgery with a few post-surgery complications called pleural effusions. Though it kept him in the hospital longer than anticipated, Joshua did fully recover.
We do not know what is in Joshua's future. The doctors cannot "fix" his heart. We are hoping that Joshua will not need any other procedures for a long time. In the meantime, he has fun playing with his brothers and making his parents laugh. Every day with him is a blessing.
Christy D' s Story. My husband were excited when we found out I was pregnant with my second child. Then our world came crumbling down at our 21 week ultrasound; Steve and I were told our little baby girl had a severe and life threatening heart condition. Instead of joy, we were expecting, our hearts were filled with pain, fear and grief. The baby was diagnosed with Tricuspid Valve Atresia (TA)---meaning her tricuspid valve did not form. Without her tricuspid value, her blood was unable to flow into her right ventricle, enabling growth; meaning she has a 3-chambered heart.
Sydney was born on December 4th, 2006 and had surgery 8 days later. Without this surgery, which has its own risks, she would not survive. The recovery was a roller coaster ride. Sydney developed seizures 1-2 days post-op, which is a risk to having open heart surgery. Her O2 sats, heart rates, and blood pressures were all over the place. She had so many tubes and lines in her, that the nurses had run out of places to put them. After many prayers and medical assistance, we got to take Sydney home just 3 weeks later, just in time for Christmas. What a great gift!!!
At 4 months of age, Sydney had her 2nd surgery. Just remembering Sydney going through surgery last time, made us sick with grief. We knew she was in the best hands, but there are never any guarantees when it comes to surgery. Thanks to all the Angels above, the 2nd surgery was a breeze compared to the first surgery. After the surgery, Sydney's life has improved in a dramatic way. At approximately 2 ½ years of age, Sydney will have her 3rd surgery, as long as everything continues to progress as planned.
Sydney, despite her medical problems, amazes me. She is full of love and life. She always has a smile, no matter what is going on. I thank God for her every day, and despite the fact it is hard being a “heart parent”, there is NEVER a day, or a moment, I would change it, if it meant not having Sydney in our lives.
Saturday, February 09, 2008
Before I go into the 7 for 7 for today, please keep up prayers, positive energy, or whatever you can muster for baby Claire, who was sent to the hospital earlier this week with what they thought was RSV. It turns out that it's not RSV, it's much more serious, and she's having a very tough time right now. Please think of their family tonight!!
I can't believe I just posted this on the "public" blog, but I did. After talking to lots of moms all over the country in the last year, I've found out that I'm not alone. In fact, I found out that I'm not unique at all in these 7 things - they are the norm when it comes to coping with a life-threatening illness with your child.
- Realizing What a Gift Life Is. The miracle of life is more poignant than ever before. As an emotionally-reserved kind of person, I'm amazed at the overwhelming emotions I have when it comes to babies. I cry in part out of joy, in part out of longing for those moments that were lost with my daughter, part in sadness over the babies I know that were lost, and mostly over the miracle that I see. Life, simply, has so much more meaning to me.
- My "Uninsurable" One. I've unfortunately learned the hard way what the real status of health care in America is, and it infuriates, sickens and saddens me simultaneously. When Sadie was first born and crisis hit, we were left with several six-digit "balance" billings that took over 213 hours to get down to manageable sums. Sadie has now been deemed "uninsurable" by every health insurance provider in Virginia. We're hoping she can get medicaid since everyone has denied her, despite the fact that we make too much to qualify according to state laws (ironically, we'd be much better off insurance-wise if we were on welfare at the moment).
- Learning to Let it Be. With Katie, I spent hours upon hours in instructive play, devouring educational theory and incorporating it into every day life. When Sadie came along and had a "defect," I was even more determined to do the same to keep her at or ahead of the milestone charts. Instead, Sadie has taught me to step back and enjoy her milestones as she reaches them at her own pace. Her unique personality and the obstacles she's overcome have made me stop and relax and enjoy those moments of play for the sake of play, snuggling without talking, and letting the house go to hell in a handbasket while we chase each other in circles.
- Financial Challenges. I have avoided this post like the plague, but after talking to families of all "status" levels with CHD kids, I feel like I can now share this. Frankly, have felt ashamed at the toll the entire experience has taken upon our family's finances. Like I should have somehow been prepared, or been able to avoid the impact it's had. The co-insurance costs, counter billing, medication, doctor and specialist co-pays, loss of income from extra time off of work, extra child care... the list goes on and on. It's incredibly hard to put myself out there and admit that it's taken a huge toll on our finances. That being said we are lucky - we've taken a hit, but we're surviving. I've met other families have lost everything they own in their fight for their child's life. It's enough to make me run to Canada and wave the socialist flag.
- Learning How Tough Marriage Can Be. I can't even begin to describe to you what it's been like for Jason and I this past year. Some of you know about it, some of you don't, but let's suffice it to say we've definitely had our ups and downs in our 12 years of marriage. But nothing can put a strain on a relationship like having a child in critical condition. You feel closer, yet more alienated from eachother. Your full attention goes to your child's survival (and, in our case, in worrying about the impact on Katie as well), and you lose a lot of yourself and almost all of your relationship in it. Having a partner beside you going through the same thing, but with differing ways of handling things (because none of us are truly alike in how we deal with stress and grief!) is both wonderful and incredibly hard.
- Smiling at Tantrums. I used to roll my eyes at parents in stores that had tantruming children, thinking how my child would never behave that way thanks to my parenting prowess. Someone upstairs wanted to take me off my high-horse, and did so with my second child, who has CHD. As I've mentioned once or twice, Sadie has some insanely intense tantrums, which worry me (developmentally) but also reassure me. I'm thankful her heart is strong enough to support them. I'm thankful I get to hear her voice. Most of all, I am thankful for her life. Now I'm the one being glared at, and though I'm embarrassed and ready to run from the store, I can always find a smile at the know-it-all, because he or she has no idea that this screaming banshee in my grocery cart is the ultimate survivor.
- A New Perspective. My friend Christy, mom to Sydney (see the 7 faces entry 2 days earlier), wrote, "Having a child with CHD had totally changed my prespective in life. I do not sweat the small stuff like I used to. I have learned to cherish the moments with my children. For the smiles...drools....tears....temper tantrums....arguments....laughs....for their strength....courage.... and most of all, for how much they teach me about life and unconditional love." Well said, Christy, and ditto to that!!
Friday, February 08, 2008
OMG. Remember when I blogged about everything breaking in November/December? Well it wasn't everything. Yet another breakage - this time the hot water heater. Can a girl get a break, please?!?!
CHD blogging daily is MUCH harder than I thought. Hours a day are being devoted to it. So you better be reading it!! :)
I miss my normal blog, so had to throw in a complaint so that you know I'm still here, and still me.
Now that we have some people interested in this site and in creating CHD awareness, I'm getting lots of questions on how to help the campaign for awareness, where to make donations, and what else can be done. For today's list of 7, here are some suggestions of how you can help.
Give Blood. Before, during and after surgery, our children have multiple transfusions. Sometimes these can come from family members, but many times, if the surgery is not pre-planned, this blood comes from strangers like you. Your gift of blood goes a LONG way for a child with CHD!
Vote on Health Care Issues. In future blog entries, we'll start to delve into the problems that our current health care systems leave families of CHD facing - things like bankruptcy, suggestions for divorce (to qualify for aid), unsurmountable medical bills and general agitation and frustration over the hours that must be spent fighting first for our children's lives, then for the insurance to cover the costs. Don't worry, we'll offer some loopholes and promising information we've found as well. When you see a bill come through that promotes options for "uninsurable" patients (as many CHD patients have been deemed), VOTE, contact your legislator and talk to your community about it.
Support your local group. There are a large number of CHD-related groups out there, each offering services to families... from support to financial aid, medical guidance to research. We have not yet been able to verify the best source to donate funds directly to research of CHD, so I instead encourage you to participate in a fundraiser for a group in your community, such as local chapters of Mended Little Hearts or Its My Heart, make a donation and get involved.
Become an organ donor. Today I read wonderful, yet heart-breaking news that a little girl received her much-needed heart transplant this morning. She had been on the waiting list for over 60 days, and is just over 9 lbs. Through someone else's tragedy, her life has been saved. It's hard to even fathom, but the donation of you or your loved ones body can save one or more lives.
Advocate. You're likely reading this because you, a friend, or a loved one has been affected by CHD. If so, get out there and talk about it. Talk to your doctors, OBs, ultrasound technicians, social workers - anyone who may come across CHD. It's surprising how little they know
Join Forces. If you already belong to a CHD-related group, encourage them to join in first on the Awareness Week campaign, but secondly in finding ways to unite our community. We need to find a common ground that all of our groups can participate in - a way to advocate to the masses and find new sources of revenue for research. Whether it's through an existing organization (I don't know which one to point to at this point, sorry!) or something we need to create, a concerted effort is beyond overdue and necessary.
Support a CHD Family. If you are a friend or loved one of someone who has CHD, simply being a listening ear, taking over meals during the "trying times," sending messages of support, prayers and positive energy all make big differences to a family with CHD. Offer to assist with child care for siblings, to stay and let the parents rest, to mow the lawn, to clean the house, to work overtime so they can have more time off, whatever will assist them. Most won't come out and say they need help, but we all enjoy the help we do receive.
Thursday, February 07, 2008
Today is the first, official day of CHD Awareness Week. This week's blog entries will each feature lists of 7s relating to CHD. We hope you will enjoy it, maybe learn something new and pass it on! Quite a few friends are participating in this effort, and we want to thank them in advance for their stories, photos, shared memories and other information.
This challenge has been more time-consuming than I imagined, so I will be posting these entries this week on both my personal and the LearnAboutCHD blog. Sorry for the cross-posting in advance!
Today's entry features 7 beautiful people who have broken, mending or mended hearts as a result of CHD. Each has a unique story and has faced many challenges of CHD. Some have more challenges to face. No two have the same results from CHD, but all have the same common goal - making the most of the heart they have been given!
Jameson is a 16 month old with Hypoplastic Left Heart Syndrome. She is a loving and happy toddler, full of hugs and kisses, and an absolute joy to be around. Her first open heart surgery took place when she was 4 days old, and her second at 4 ½ months. After her second surgery, Jameson began to grow stronger every day. Lately, though, she sometimes gets easily winded when she is cruising around, and her stats are chronically lower than normal. Other than that, the scar that is hidden under her shirt is the only proof of what this little girl has been through. Her third surgery (the Fontan) will be in April.
Lauren was diagnosed with Tetralogy of Fallot at birth. Her parents were told that she probably wouldn't make it and I was taken by ambulance to UNC Chapel Hill where I had open heart surgery at a week old. There they performed a temporary repair that lasted until she was 17. Lauren then had another surgery to close up the shunt and perform a homograph pulmonary valve replacement. Her family and friends have always been very supportive and treated her as an equal to her sister, who has a healthy heart. She now is the co-coordinator of Mended Little Hearts in Central Virginia, and is grateful to have been given the opportunity to live and help others. At age 36, there is always a probability that she will have to have another surgery, but for now she is able to do anything I want to do (except be a flight attendant - she's not tall enough!).
Gabe was born in July 2006 and surprised his family with the news that along with a full head of hair, he also had a broken heart. He was diagnosed with D-Transposition of the Great Arteries, minimal Pulmonary Stenosis, and a bicuspid valve. He has undergone two open heart surgeries to repair his heart, and now has pulmonary stenosis due to the nature of his second repair. His family has high hopes that he will outgrow it and that if any intervention is needed, it will be in the cath lab. His mom says he disobeys her with glee, and is a "blur these days... ever moving!"
Sydney was diagnosed with Tricuspid Valve Atresia (TA), meaning her tricuspid valve did not form. Without it, her blood was unable to flow into her right ventricle, enabling growth, leaving her with a 3 chambered heart. She had her first surgery when she was 8 days old and her second at4 months. At approximately 2 ½ years of age, Sydney will have her 3rd surgery, as long as everything continues to progress as planned. She will never be “fixed” unless a way of creating a new chamber is discovered through further research.
Harlie has Goldenhar Syndrome, VACTERAL Association, and Congenital Lobar Emphysema. Harlie’s heart defects are: L-TGA, VSD, intermittent 2nd degree heart block, small right ventricle, and 2 small Superior Vena Cava’s. She was also born with a mass in her chest, and a variety of other physical anomalies. To date, she has had 7 surgeries and spent over 4 months total in the hospital. Despite everything, she is one of the sweetest and happiest babies you could ever hope to meet. In the past two months she has learned 21 signs, and loves show off her new communication skills, which include putting two words together. She hardly ever cries and is absolutely beautiful - your heart just melts when you meet her!
Claire is currently in the hospital with RSV - send positive energy and prayers her way! She was born with TGA and VSD, as well as a faulty valve, which resulted in her having to have a Rastelli Repair, which uses artificial material inside and outside the heart to create the figure eight necessary for normal oxygenation of the blood. If all goes as expected, Claire should be able to act like any other child. Though she will have to have at least a couple of conduit replacements as she grows, there is a bright side there as well. The conduit replacements are not quite as "invasive" as they are at the front of the heart, research on expanding the conduits without open heart surgery to prolong the time before replacement is taking place and there is the possibility through stem cell research that a conduit could be grown from Claire's own cells that would grow with her.
Sadie came into the world screaming, but quickly turned blue and was taken from her parents. She was diagnosed six hours later, when she was critically ill, with TGA, ASD and VSD. She received a catheturization that night, and took 11 days to stabilize enough for the surgery that was required for her survival. Though she suffered drastically from drug withdrawals after surgery, she quickly healed. Today she is a strong-willed bundle of energy. She will continue to receive annual cardiology check ups, but there is a very good chance that no further invasive procedures will be necessary in her life time.