Gabriel's Heart

Little Ra

2008-05-21T10:50:00.000-07:00

Last week we celebrated the one year anniversary of Gabriel's second open heart surgery to repair the supravalvular pulmonary stenosis he developed as a result of the Arterial Switch. I wish I knew the words to describe what a significant moment this is for myself, my family, and of course, WonderGabe. At 22 months old, this is the longest my babe has gone without surgical intervention and that realization is a bittersweet one, but one that gives more sugar, much like Gabe himself, with each passing day.

The miracles of modern medicine have saved Gabe's life twice.

The first time I could tell that Gabe was at the mercy of science. His skin was pale and slightly blue; his breathing became fast and labored; he stopped nursing and lay beside me utterly exhausted as oxygen began to escape him. I had no doubt that he needed a savior. Or a few.

The second time I couldn't believe that my thriving, asymptomatic, pink baby with his wide smile, sparkling eyes, and bubbly laughter was ill...ill in any way. I needed proof before I could let another hand hold his heart again.

And proof I did receive.

This would be Gabe's Pulmonary Artery behaving very badly.

By the time he was admitted for surgery (as asymptomatic as ever), the pressure gradient on the right side of his heart was between 90-100. A normal gradient is 0-10.

He definitely needed a savior again.

And again he found one in his surgeons, who I like to think of as the Dynamic Duo. They will never know just how much I idealize them, but I hope they know, truly understand the enormity of the gift they gave us.

One of our surgeons (whom we happen to share with the Portas) was featured in Michael Ruhlman's Walk on Water: The Miracle of Saving Children's Lives long before our paths crossed. These are his words.

"A surgeon's quest is not for perfection but rather for grace" he said without hesitation.
"Define grace".
"A moment of clarity. You're not yourself, you're an instrument of something else. When I was in thoracic surgery, doing a pneumonectomy, taking out part of a lung, I had to sew the pulmonary artery back together with one hand because I was holding the trunk of it with my other hand. I didn't even think. Forehand, boom, boom, boom, boom, four backhand, and it was done. The guy I was training under said, 'Frank, that was a moment of grace. Never forget it.' I hadn't realized, I was surprised, but he was right, and to this day it delights me to think about it...that's what I strive for.
Larry Bird was once asked about Michael Jordan after a game between Boston and Chicago when Jordan was on--really on, even for Jordan--and Bird replied, 'That wasn't Michael Jordan, that was God.' That's when you know you're there--when it's not even you."

This was who Gabe was then.

And this is whom he has become.

I will never be able to express my grattitude for the grace of the gods, the power of the universe, the strength of my son's little body, the advancements in medicine, the prowess of the hands that held his heart, the randomness of luck or any of the hundreds of moments and actions that have brought us to today. Whether it was fate or a random occurance that allowed my baby to grow into a little boy is regardless because today I have an after picture. Today is after.

There are no words strong enough or big enough to convey the beauty of after...even when the future is unsaid.

And on the day when I woke up knowing it wasn't just another day, but it was the day; on the day that WonderLove called me at work to share stories of Gabe's deft ability to derobe and run amok in his naked, diaperless, glory while coaching tales of his misbehavior in the stern admonishment that this day Gabe would be free from punishment no matter what or who he climbed, however much his long distance calls would cost us; on this day Pinko Grammy, feeling the same tenderness we all felt, sent me this poem about her beloved grandson. The one she calls her Little Ra.

Little RA

Little RA burst into life,
demanding clearly“Fix me first”
and we shall see if you can be
the kind of folks to handle me.
If you can do that, possibly,
I’ll let you take a shot at me.

So much to see and learn and feel,
so hard to balance on the wheel
of life in time; Impatience reigns
when wants must play through weeks and days.

So quick to shoot his blinding rays
to tender mountaintops and glee,
to sharper edges beckoning
as well to flow right over.

He will reach his arms to these
the edges, smiling, joyful haste
in light we’ll teach him not to waste
and then stand back and watch him – pulsing –
Shine.

A father’s dream, a rooster fine
with mind enough to walk
the line his mother teaches – possibly,
probably in fact. If we are
just as quick and strong as he,
Little Ra will grow to be the sun.

May the light of grace and the sun's rays keep shining...

The Makings of Lil' Fro

2008-05-08T06:50:00.000-07:00

Putting the great debate to rest...

Did Gabe's SupaFro come from my curly girl genes...

Or from those of Sir Snores Alot?

Either way, don't you think it suffices to say that I kinda gave birth to my husband?

So No, Gabe doesn't look like me.

Debate over.

My claim to fame is the shape of his fingernails and his upper lip. Well, in the name of honesty, that isn't all he got from me. I'm pretty sure the infamous Drop and Flop and penchant for hysterics came from my side of the family. Okay, that's a lie. It just came from me. However, along with just about every physical feature he could possible inherit from his father, he also snapped up Sir Snores Alot's joyous rejection of authority...as in Sir Snores Alot derives pure and unadulterated joy from getting on my nerves. Yay for me.

So, what are the makings of your kidlets. Start spilling or I'll start tagging.

I'm not kidding, folks.

Sweet Relief...

2008-05-07T05:46:00.000-07:00

Gabe's appointment with the fantabulous Dr. G went well. Not surprisingly the concerns I listed in my last post are mostly my own; the biggie is Gabe's stenosis from his patch procedure. And the verdict on the stenosis is that it is exactly the same - not getting any better, but not getting any worse. Since we have been down the stenosis road before, we (intimately) know how quickly it can go from "moderate" to surgery, so this is a good thing.

Dr. G did hope to see some improvement in the stenosis - meaning that the area would grow with Gabe - but seeing as the velocity of the blood flowing through the artery is measuring at the exact same rate as it did on his last echo, it looks like his wee artery is just maintaining the status quo. Of course, according to my most rudimentary (embarrassingly so) understanding, if the area wasn't growing with him at all, it would be worse and not the same, so I am going with it's growing a little.

It sounds like Dr. G. is preparing us for future intervention in that artery...again. We talked quite a bit about the cath lab and balloons, a future that will likely come to be realized before Gabe starts Kindergarten. The upside is that the likelihood of a successful balloon procedure is greatly increased from what it was when Gabe was an infant - at which time they couldn't even attempt the balloon because the risk of damaging the valve was greater than the potential benefit. Apparently this risk ratio changes drastically when a child outgrows infancy, so the risk of actually doing harm is significantly reduced. The downside is, as always, if the balloon didn't work we would, once again, be staring surgery in the face.

But back to the upside:

- Gabe's heart is functioning at 100%
- There are no other stenotic areas and scar tissue has not built up on his switch site or patch site
- Gabe's pulses are perfect
- His blood pressure, while elevated due to the screaming (the blood pressure machine is frowned upon in Gabe's world), was not a concern
- Gabe is up from the 5th % in weight at the time of his last OHS a year ago to the 20% today (25 lbs)
- Gabe is holding steady around the 60-65% for height (34")
- If Gabe didn't have stenosis from the patch, Dr. G. said he would be in perfect recovery.
- Gabe isn't on any medications
- Gabe shouldn't be considered to be medically fragile in any way whatsoever; we should treat him just like any other toddler in the world
- Gabe isn't under any restrictions
- And yes, I should just calm down

I did ask Dr. G. about the elusive yearly cardio checkups that so many of Gabe's post ASO peers have - as in will Gabe ever be able to move to a yearly appointment? Apparently the stenosis has quashed that in the bud (damn stenosis), and semi annual checkups to monitor the stenosis is on our dance ticket.

Did I add that the stenosis isn't bound by universal law to get worse. Currently it is still calssified as "mildish" not yet severe enough to be considered as moderate, but representing a larger flow obstruction than the mild category does. It is possible that it could just stay the same; in that case, we will just chill out and visit with Dr. G.

As for the rest of the visit - Gabe was a superstar. I was completely convinced that we would need a team of bruisers to hold Gabe down for the echo, but wowza, did that kid prove me wrong. He stood up on the scale for his weight and was measured against the wall like SUCH a big boy (I'm not sure he was as impressed as me). I am beginning to think that he actually listened to me when I told him he would have to lay down quietly and watch Sesame Street, because that is exactly what he did. He helped put the electrodes on and was entirely submissive. Either he finally used his listening ears or he is (and rightly so) intimidated into quiet behavior the sterility of medicine (helped with a hefty dose of memories of hospital beds)...though he wasn't actually scared until he finally saw his Arch Nemesis - the Blood Pressure Cuff.

All in all, a fine visit I'd say. Once I let go that we will never have that magical discharge visit; that elusive "He is fine; run into the world and play football; we'll check in next decade", I think a may begin to see such visits as very good indeed.

Me and my issues.

Crossing Fingers and Holding My Breath...

2008-05-06T07:45:00.000-07:00

This afternoon is Gabe's one year followup to his last (hopefully forever)open heart surgery and patch procedure. Technically, we are shy of the one year anniversary by nine days, but we figured it was close enough. Gabe will have an echo today, if all goes as planned and Sir Squirmy plays well with others. He hasn't had an echo since last summer and I'd be lying if I said I wasn't anxious. Dr. G has certainly seen him enough between here and there, and according to our favorite life saving doctor, Gabe's murmur sounds like it is at least the same if not better. I love Dr. G., but no man has ever made me cry as much as him, so let's hope this isn't a hankie visit.

Concerns:

1) During Gabe's surgery the team discovered he had grown collateral arteries - which is truly amazing. His body adapted to the stenosis in his pulmonary artery by making new arteries to the lungs - how cool is that? However, following surgery, those extra arteries were not needed and we have to see how his body reacts to the change in circulation.

2) The nature of Gabe's repair fixed the prior stenosis, but created a new stenotic area when they patched the prior stenosis. The gradient in his heart pressure wasn't high enough to be considered moderate or low enough to be considered mild. Dr. G. has settles on "mildish".

3) As always, Gabe is at a higher risk for developing stenosis and valve problems.

At our last appointment when I forced Dr. G. to tell me how Gabe's heart was doing on a scale of 1-10 (I would loathe to have myself as a patient - poor Dr. G.) with a 10 being a child post ASO who had no scarring issues and healed perfectly, he gave Gabe a 7. I would prefer an 8 or a 9, but I can live with a 7. Gabe can live with a 7.

Dr. G. reaffirmed at our last appointment (because I forced him to) that there was no reason to expect that Gabe's heart wouldn't last a lifetime (a long lifetime) or to anticipate that he will need more surgery. We are hoping that Gabe will outgrow most of concerns (which honestly, are likely more mine than Dr. G's) and that any remaining ones, if necessary, can be handled in the cath lab.

Gabe will always have some degree of narrowing. Gabe will always have a bicuspid valve. Gabe will always have collateral arteries. But as long as everything behaves itself and plays well with each other, Gabe's heart should continue to function at 100%.

So...why am I so nervous?

Cross your fingers for us, okay?

Cracker Smack Down

2008-05-05T09:03:00.000-07:00

At this year's MayDay parade, Gabe and his future wifey, Lil' A, got into, what can only be called, the Great Cracker Smack Down. Apparently Gabe doesn't subsribe to the whole "ladies first" school of gentlemanly thought...especially when it comes to his snacks.

Who won? You be the judge.

Is my child actually growling?

Note to self - this will not help future in-law relations.

For Those Who Have Sons

2008-04-24T07:28:00.000-07:00

And those of us who are happy that that they don't.

1. A king size waterbed holds enough water to fill a 2000 sq. ft. house 4 inches deep.

2. If you spray hair spray on dust bunnies and run over them with roller blades, they can ignite.

3. A 3-year old Boy's voice is louder than 200 adults in a crowded restaurant.

4. If you hook a dog leash over a ceiling fan, the motor is not strong enough to rotate a 42 pound Boy wearing Batman underwear and a Superman cape. It is strong enough, however, if tied to a paint can, to spread paint on all four walls of a 20x20 ft. room.

5. You should not throw baseballs up when the ceiling fan is on. When using a ceiling fan as a bat, you have to throw the ball up a few times before you get a hit. A ceiling fan can hit a baseball a long way.

6. The glass in windows (even double-pane) doesn't stop a baseball hit by a ceiling fan.

7. When you hear the toilet flush and the words "uh oh", it's already too late.

8. Brake fluid mixed with Clorox makes smoke, and lots of it.

9. A six-year old Boy can start a fire with a flint rock even though a 36- year old Man says they can only do it in the movies.

10. Certain Lego's will pass through the digestive tract of a 4- year old Boy.

11. Play dough and microwave should not be used in the same sentence.

12. Super glue is forever.

13. No matter how much Jell-O you put in a swimming pool you still can't walk on water.

14. Pool filters do not like Jell-O.

15. VCR's do not eject "PB & J" sandwiches even though TV commercials show they do.

16. Garbage bags do not make good parachutes.

17. Marbles in gas tanks make lots of noise when driving.

18. You probably DO NOT want to know what that odor is.

19. Always look in the oven before you turn it on; plastic toys do not like ovens.

20. The fire department in Austin , TX has a 5-minute response time.

21. The spin cycle on the washing machine does not make earthworms dizzy.

22. It will, however, make cats dizzy.23. Cats throw up twice their body weight when dizzy.

24. 80% of Women will pass this on to almost all of their friends, with or without kids.

25. 80% of Men who read this will try mixing Clorox and brake fluid.

I finally got a chain email I liked.

He Has Got to Stop Doing This...

2008-04-24T05:54:00.000-07:00

Yep, that's Sir Squeaks Alot who, yet again, has sandwiched himself between the front door and the screen door. One dinner too many and he is going to painful reality check...

It's just a matter of time.

Some Relief From Medical Bills...

2008-04-23T07:47:00.000-07:00

Not much, but some.

At least one organization realizes the enormity of the financial burden placed on families that have children with a, as our clinic puts it, "significant medical history" or medical needs. I have ranted about the state of medical insurance before (in summary - it totally sucks) and I have no doubt that I will rant again. Thank the gods our heart baby was born in a state that backed our private insurance because of his heart condition which saved us from financial ruin. At the tender age of 21 months he is our half a million dollar baby. That is for a total of 24 days of combined hospitalization, including two ORs, cardiology and specialist care, and followup.

That is without complications.

That is what it cost to save his life.

But, before I get my panties all up in a bunch (again), here is the good news:

New Grants Available for Families Struggling With Child Health-Related Expenses

MINNEAPOLIS (April 10, 2008) – UnitedHealthcare Children’s Foundation (UHCCF) announced that new grants are available to help children who need critical health care treatment, services or equipment not covered or not fully covered by their parents’ health benefit plans.
UHCCF provides grants to families to help pay for child health care services such as speech therapy, physical therapy, occupational therapy sessions, prescriptions, and medical equipment such as wheelchairs, orthotics and eyeglasses.

Parents and legal guardians may apply for grants of up to $5,000 for child medical services and equipment by completing an online application at http://www.uhccf.org/. Tax-deductible donations can also be made online.

To be eligible for grants, children must be 16 years of age or younger. Families must meet economic guidelines, reside in the United States and be covered by a commercial health benefit plan. “We are taking action to improve access to health care in America and are dedicated to helping more children and families this year and beyond,” said Matt Peterson, UHCCF president. “We encourage families who need assistance paying for their child’s medical needs to visit the UnitedHealthcare Children’s Foundation Web site and apply today.”

“My son Bryson was born with Down syndrome and a heart defect, which would require open heart surgery,” said Jane Baker. “With the stress of knowing that our precious son was going to need major surgery, along came the worry of medical bills. Our caseworker told us about the UnitedHealthcare Children’s Foundation. We were given a generous grant to help with our medical expenses. What a blessing UnitedHealthcare Children’s Foundation has been for us. I am so thankful that there are people out there willing to help and give in times of need.”

The foundation aims to help more children by increasing awareness of the foundation through fund-raising events, partnerships, newspaper and Web advertising, and a revamped multimedia Web site, http://www.uhccf.org/.

About UnitedHealthcare Children’s Foundation
The UnitedHealthcare Children’s Foundation is a nonprofit 501(c)(3) organization that strives to enhance either the clinical condition or quality of life of children who have health care needs not fully covered by commercial health insurance. The Foundation provides grants of up to $5,000 for costs associated with medical services and equipment. Foundation funding is provided by contributions from employees of UnitedHealth Group as well as individuals and corporations. While UHCCF receives contributions from UnitedHealth Group and its employees, individual and corporate donations to help provide assistance are deeply appreciated. To donate or learn more, please visit http://www.uhccf.org/.

Research Study: Your Story Matters

2008-04-23T06:40:00.000-07:00

Are you a parent with a child who has experienced a medical error?
(Telephone interview/UMass Medical School)

Researchers at the University of Massachusetts Medical School are seeking parents who have faced problems in their child’s health care for a study to improve how doctors and institutions respond to medical errors, and to prevent future medical errors from occurring.

Have you ever experienced any of the following problems in your child’s health care?

Delayed treatment: it took longer than it should have for doctors or nurses to give your child the correct treatment.

Delayed/wrong diagnosis: it took the doctors or nurses longer than it should have to find out what was wrong with your child.

Unnecessary procedure/treatment: your child went through a procedure or treatment that was not needed.

Other mistakes or errors in you child’s care.

Participation in our research study involves a single telephone interview which will last between 30 to 60 minutes. Compensation is provided. [IRB docket# H-12623] Call 1-800-283-2556, extension 51057 or email Medical.Errors@umassmed.edu

Beyond the Valley of Cute

2008-04-16T10:16:00.001-07:00

Last night I sat Gabe down on the potty for the second time in his short, poop filled life. He popped right back up, like a jack-in-the-potty. Color me not surprised. Am I really potty training my not yet two year old man child? No, not really. But I am trying to familiarize him with his (hopefully) new best friend as I am so, so over diapers.

Miss Emma is still in pullups (which is actually more of a testament to my commitment issues than hers) and as I am ever the efficient one, I am now in search of that infamous (and often unattainable) two for the price of one.

Last night I sat Gabe down on his potty about 10 inches away from Emma and her potty. After both my attempts and Miss Emma's to keep Gabe securely seated were foiled by Gabe and his never ending boyness, Pinko Grammy stepped in and held him down. We could begin.

I got out our Potty book (so, so disgusting. I am only doing this because I love them.), which Gabe immediately liberated for his own destructive purposes, much to Miss Emma's distress. We have a routine Gabe; work with it. After I saved the potty book, made sure that Gabe was still incapacitated via Pinko Grammy and the potty hold, checked to see if Miss E was still excited (she was), we began.

Gabe loved the book of ickiness just as much as Emma and they were thrilled to be sitting on their potties together. Of course, I am convinced that Gabe has no idea what his potty is for, why I want him to sit on it, why I keep yelling "Penis stays in the potty, Gabe!", or what a penis even is, but I still have high hopes. One day, one day I envision a world filled with underpants, toilet paper, and a closed door. I will be on the other side. I swear.

But last night, last night after all the arranging and settling in, my little boy did the cutest thing ever. Even cuter than when I make him walk with his tummy sticking out (all mommies have to have a baby trick). He, with Pinko Grammy still holding him securely at the shoulders, scooted his little potty chair over the Emma's until their knees were touching. And there they sat, giggling and excited as I read words I never want to repeat again.

It was truly beyond the valley of cute.

Is There a Doctor in the House?

2008-04-10T19:53:00.001-07:00

How cute is that?

He is sleeping with his brand new stethoscope right now.

He won't give it up for anything.

Wordless Wednesday

2008-04-09T08:55:00.000-07:00

T is for Time Out

2008-04-08T07:41:00.001-07:00

Children, Cats, and Husbands stay off tables.

We do not sit in window sills next to giantinormous windows above heardwood floors next to television sets just waiting for the moons to allign just so we fall down.

Hard.

Could Emma have flashed a more perfect model smile?
Methinks she might have guessed trouble was a brewin'...

Now I just need to get a picture of him sitting on our dining room table reorganizing the ceramic candle holders and rifling through the mail.

I am thrilled he has refined his climbing skills so. Isn't my excitment just oozing out of my words?

I'm not even going to get into PoopGate 2008 - the worst possible way to spend a Friday evening. It's been three full days since the incident, and I still feel dirty.

Trust me, you don't even want to know.

Finally...

2008-04-07T08:25:00.001-07:00

My lord. It's about time.

Tacoma General Hospital in Tacoma, Washington has launched a new study that will allow parents the chance to have their newborn's pulse oxygen level tested in an attempt to screen for hidden heart defects. And by hidden, they mean heart defects that don't cause obvious symptoms to show or send the cardiac team a runnin'. Even though Gabe was born with a cystic heart defect, his was also a secret for his first 24 hours. His ever changing leg color was explained as an immature nervous system. The murmur heard was explained as an open PDA and then as a PDA that was closing. As that PDA closed, rapid breathing and lethargy set in while he became a more pronounced shade of blue. When that little non invasive pulse oximeter was taped to his wee foot, his oxygen level was at sixty percent. Normal is one hundred percent.

They got Gabe just in time...but it was close enough that many, many nurses and doctors told us how lucky we were that he went into respiratory distress while we were still at the hospital. All too often it happens after discharge.

This "test" is completely non invasive and for the life of me, I cannot figure out how it would cost a hospital additional dollars to administer. It's not like an echo cardiogram...it is simply a nurse or doctor placing an electrode on a miniature sized foot, wrapping it up in tape, and turning on a machine. results are instantaneous.

I have never seen a charge for pulse oximeter monitoring on any of our numerous and oh, so itemized medical bills. I cannot fathom why this isn't as routine as APGAR scoring (which compared seems to be less than a science. Did I mention that Gabe's APGAR scores were 9 and 9? Yet, he had a potentially fatal heart defect).

For more on Tacoma General's study clicky click right here.

Included in the article is actually a great list of CHD warning signs that TGH doctors are sending home with new parents - also a must in my opinion. Too many parents take their children in for a cold only to find out that their child is in congestive heart failure. That is not okay. Seriously...what a nightmare.

What to watch for:

Infants up to age 1

• Tires easily during feeding, falls asleep before feeding finishes

• Sweating around the head, especially during feeding

• Fast breathing at rest or during sleep

• Pale or bluish skin color

• Poor weight gain

• Sleeps a lot; not playful or curious

• Puffy face, hands or feet

• Irritable, difficult to console

Ages 1-17

Symptoms might not appear until later in childhood. Things to look for in older children:

• Gets out of breath during play, crouches or squats to catch breath

• Difficulty keeping up with playmates

• Tires easily or sleeps a lot

• Change in color during active play or sports; looks pale or has bluish tint around mouth and nose

• Frequent colds and respiratory illness

• Slow growth and weight gain; poor appetite

• Complains of chest pain or heart pounding

It's about time.

Wordless Wednesday

2008-04-02T07:12:00.000-07:00

The Aterial Switch Operation in Technicolor

2008-04-01T12:46:00.001-07:00

OMG! You can find anything on YouTube!

From Discovery Health's Train Wreck Heart episode

The actual operation:

Great. Just Great.

2008-03-28T10:34:00.000-07:00

First I was a soulless psychopathic narcissist, and now I am a:

You are a Hippie

You are a total hippie. While you may not wear birks or smell of incense, you have the soul of a hippie.

You don't trust authority, and you do as you please. You're willing to take a stand, even when what you believe isn't popular.

You like to experiment with ideas, lifestyles, and different subcultures.

You always gravitate toward what's radical and subversive. Normal, mainstream culture doesn't really resonate with you.

Are You a Hippie?

A dirty, soulless, psychopathic, narcissistic hippie.

That's just great.

What I always hoped I'd be when I grew up.

Pinko Grammy is somewhere laughing her a$$ off right now.

So...how dirty are you? Don't fight it. You know you want to know...

Makes My Heart Go Pitter Pat

2008-03-27T10:43:00.000-07:00

Pink girlie socks and all.

Don't ask.

It's Time to Get Your Awareness On!

2008-02-08T08:03:00.000-08:00

Congenital Heart Defect Awareness Week is Upon Us!

It's all about CHD from Feburary 7-14!

Those outside of the CHD community may wonder what the point of an awareness week is, but those of us who have found ourselves fated to membership in this club know are all too familiar with the deficit of knowledge surrounding congenital heart defects. The American heart Association has done an admirable job of advocating for, researching about, and promoting general knowledge of acquired heart disease. Because of the AHA everyone knows that if you spend your life gorging on cows, licking the lard bowl, eating Twinkies for breakfast, smoking those bad cigarettes, and drinking a keg nightly you shouldn't be all that surprised to find yourself with a heart condition (alright, maybe I am exaggerating a tad but it's okay because I only play a doctor on the internet). However, to this day, when I tell people about Gabe's heart they look at me like I huffed paint my entire pregnancy.

That would certainly never happen to them.

Really? A typical (i.e. not high risk; not one borne of advanced maternal age; not a paint huffer) pregnancy that goes to term has a 1% chance of producing a baby with a heart defect; in other words 1 out of 100 women will deliver a baby with a heart defect. As the Congenital Heart Information Network states:

Congenital Heart Disease is considered to be the most common birth defect worldwide, and is the leading cause of birth defect related deaths. Despite these statistics, there have been few organized international resources dedicated to meeting the needs of the families and individuals affected by CHD.

And that's exactly the problem. Congenital heart disease is incredibly different from acquired heart disease and needs its own resources, research, advocacy, and the general public has a right to be educated about it. Especially the pregnant population.

Gabe's heart defects weren't found on ultrasound. They were obviously present, but the sonographer didn't have the knowledge to look not just at the four chambers of the heart, but at the circulation of the heart. Thank the gods that we already had had a crisis birth; that experience provided me with enough insight into emergency medical management that we decided to switch birthing hospitals, just in case. If Gabe had been born elsewhere, at a hospital not attached to a Children's Hospital with an excellent cardiac department, or god forbid, in a rural community where he would have needed to be life lifted hours away, his fate may have been very, very different. We could have lost him. I could be missing out on his baby breath kisses (in all honesty, not always such a sweet smell) right now. I could be mourning him for a lifetime. I could have missed knowing the bestest little boy in all the world.

It could have been tragic.

I did not know how common heart defects were until after Gabe was born. Before Emma was born, I did know how common Down syndrome is. What pregnant woman doesn't? Yet the current rate of 1/700 babies being born with an extra chromosome poses a far less significant risk than the risk of congenital heart defects. Not to mention that I never thought we were going to lose Emma; I never had to fear for her life as she lay paralyzed on an operating table with her chest open and hands desperately trying to heal her heart.

This my blogger friends, this is why it is such an important week.

I highly recommend visiting a few sites during what I hope is a week full of insight, information, advocacy and revelation. First on the list is the Congenital Heart Defect Blog which has launched the 7 for 7 campaign: Lists of 7 things about CHD. Kim, the blog maestro, is looking to spread the word and hopefully 7 for 7 lists will pop up all over cyberspace. She is also asking for community participation, so if you've got it, get with it. Plus, Gabe is featured on today's entry and he, as we all know, is the bestest little Gabe ever.

Did I mention her snazzy 7 for 7 graphic? Its shinny and pretty. Who wouldn't want to post this on their blog?

So, let the games begin!

Why Hello Stranger...

2008-01-18T07:35:00.000-08:00

My name is Slacker, Slacker, McSlackerity Slack.

My bad.

The holiday ruckus of 2007 was just too much for my pretty little head to bear, and was so draining it sucked all the cyberspace right out of me. Airplanes, Allergic Reactions, and Christmas Chaos, Oh My!

A few choice moments from the wonderwhirl of our life:

1) Gabe started walking just before Thanksgiving. He is like a blur to me now...ever moving.

2) Gabe has started to gleefully disobey me. Seriously. I have never seen my disapproval bring such joy to anyone before. According to Pinko Grammy, he came by it honestly; need I say PG thinks it is hilarious? Funniest thing she has ever seen.

3) Gabe is now picking his nose to spite me.

4) Gabe had a mysterious allergic reaction over Thanksgiving and ended up in an out of state urgent care with a nasty case of the hives. Of course, as always, his medical history freaked the staff right out and he was hooked up to an oximeter in no time flat. Note to medicos - all screaming children stat low. Must stop wailing to breathe. Well then, after that was taken care of and they realized Gabe was breathing just fine (and the epi was likely unnecessary), somebody actually read his chart and realized he was there for a simple rash. Deep breaths all around, some funky medicine, and he was good to go. The hives disappeared into the mysterious void from whence they came.

5) Gabe is talking. Kinda. We are getting lots of "Yeahs", "Da das" and "Ma mas", which actually mean what they are supposed to. He has become quite fond of sign language and can sign "milk", "eat" (my lord, that child follows me around all day signing "eat"; why even take him out of the highchair?), "shoes", "go", "train" and "I love you". The last one is beyond the valley of cute.
6) Gabe spent his second New Year's Eve at O'Hare airport throwing a fit... just like the rest of us. His first new Year's Eve was spent in the ER courtesy of a nasty little hacking cough, so I guess being trapped at an airport for most of the day is progress? Oh wait. No it isn't. I wasn't trapped with him last time.

7) Gabe can work Time Out like nobody's business. I think he is actually becoming quite fond of his Time Out spot. Sigh.

8) He visited Urgent Care via our clinic for a cold this season. As usual, his medical history whipped them into a frenzy and after just a few hours he had "just a little bit of pneumonia. Or the fluid could be congestive heart failure." Off to Children's he went. The doctor at Children's walked in just as Sir Snores Alot had Gabe in a fit of giggles due to the infamous tickle wars that run in our family, took one look at Sir Gabe and said "I can tell you right now his heart is fine." But what about the pneumonia? Nope, none of that either. Let's try ear infection.

Quite the way to spend an evening.

9) Gabe and his big sister Emma are still quite in love with each other and wowsa - there is nothin' more gratifying than that. They both are such kind hearted loving children that we never cease to be amazed.

10) Gabe has finally stopped poking the cats in the eye. He now is gentle when I ask him to be. Usually.

When it works for him.

11) That child is running me ragged. I'm loving every minute of it. Kinda.

That's How He Rolls...

2007-11-06T06:11:00.001-08:00

Just like Daddy.

Cardiac Pioneers: The Loons of Medical History

2007-10-31T05:57:00.001-07:00

Episode 2:

Halloween and the History of the Pacemaker

The history of Halloween is rich and sometimes even a bit sordid, going back to the pagan days of yesteryear when the Celts celebrated Samhain. However the notorious holiday isn't just a cultural history block, but it was a tragic Halloween blackout that spurred the creation of the portable pacemaker, a medical device that was revolutionary in cardiac medicine.

Fifty years ago a massive Halloween blackout disrupted power across a highly populated section of Minnesota and western Wisconsin. People from St. Cloud to Faribault, the Twin Cities and Eau Claire had no electricity for up to three hours. For most, the outage was simply inconvenient. But for a few young heart patients connected to pacemakers it was life-threatening. The blackout did spur the creation the first portable, battery-powered pacemaker.

The first portable pacemakers were about the size of a small paperback book. Within a year of their introduction to the market, researchers in Sweden developed the first implantable pacemaker. Medtronic licensed the first implantable pacemaker in the U.S. a few years later. (Photo Courtesy of Medtronic)

"They had police officers pull up to the side of the surgery suites and simply turn on their headlights to provide light for the surgeons," says Norton. "They scrambled to try and keep blood cold by grabbing ice from various coolers to stick in the blood refrigerator."

Probably the scariest place to be that morning was the children's cardiac recovery unit. A number of young kids were connected to pacemakers after undergoing heart surgery.

When the power went off, doctors scrambled to find drugs to keep their patients hearts pumping. Still, one child didn't survive the three hour ordeal.

The trauma of that event rattled pioneering University of Minnesota heart surgeon C. Walter Lillehei. The next day in the hospital hallway Lillehei flagged down Earl Bakken, an electrical engineer who spent a lot of his time collaborating with university surgeons on new medical devices.

Bakken had just started Medtronic a few years earlier and was still running the company out of his garage. Bakken says Lillehei was clearly troubled about the blackout.

"We got together and talked about it and said we have to have some way to back these pacemakers up when there's a power failure," Bakken said in a recent interview.
Lillehei asked Bakken if he could create a portable pacemaker that ran on a battery.

The story continues and the portable pacemaker is born and lab tested once, on a dog.

"And I said, 'Okay now. This seems to work, so I'll go back to my garage and make a pacemaker we can use on humans,'" says Bakken.

But he never got the chance. When Bakken returned to the hospital the next day, he saw his invention being used in the recovery room.

On a person. On a child.

Bakken sought out Lillehei and asked him why he didn't wait for the human version of the machine.

"And he said well as long as this battery operated pacemaker was available he wasn't going to risk losing another child to a power failure."

Gotta love those loons.

For the full story, clicky click...

Is That Really His Hair

2007-10-30T12:13:00.000-07:00

Asked another Zoo Boo mom this weekend. She actually thought it was a wig to go with his pirate costume.

Nope, the 'fro is all his.

If I ruled the world...

2007-10-30T12:03:00.000-07:00

She would grow up to be my daughter in law.

And I would be living luxurious lifestyle I should be accustomed to...

Congenital Heart Disease: Not a Priority

2007-10-25T06:26:00.000-07:00

According to It's My Heart, a website dedicated to congenital heart defects, not only are CHD's the number one birth defect in the US, but research into the defects into is grossly underfunded. Those of us within the heart community have long been aware of this, but I have to wonder how known these facts are amongst the general population. Especially the pregnant population.

I know, from my own personal experience, that prenatal screening and testing is most often focused on chromosomal anomalies. In fact, as of January 2007, the American College of Obstetrician and Gynecologists recommend prenatal screening for Down syndrome for all pregnant women, regardless of age. However, while CHDs remain much more common than chromosomal anomalies, similar guidelines have not been issued in relation to heart screening.

Early detection makes all the difference in the world. Thank the gods Gabe was born at a hospital attached to a children's hospital with a superb cardiac unit. When he was admitted, his oxygen stat was at 60%. Normal is 100%.

He was 24 hours old.

You can find this on It's My Heart's website.

Congenital Heart Defects are the #1 birth defect. Source: March of Dimes
Congenital Heart Defects are the #1 cause of birth defect related deaths. Source: March of Dimes
About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year) Source: Children's Heart Foundation
Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. Source: Children's Heart Foundation.
The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD. Source: Children’s Heart Foundation.
This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation
The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year. Source: Children’s Heart Foundation
Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation
Though research is ongoing, at least 35 defects have now been identified.
4-8 percent born with CHD have Hypoplastic Left Heart Syndrome.
4-10 percent born with CHD have Atrioventricular Septal Defects.
8-11 percent born with CHD have Coarctation of the Aorta.
9-14 percent born with CHD have Tetralogy of Fallot.
10-11 percent born with CHD have Transposition of the Great Arteries.
14-16 percent born with CHD have Ventricular Septal Defects.
Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood. Source: March of Dimes
It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications. Source: March of Dimes