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

Gabe's First Wedding

2007-10-19T12:05:00.000-07:00

And his last.

My children had not been at this wedding for more than five minutes before the clean, crisp, fully dimensional person I spent all morning creating had vanished...just like that. The first cranky screams emitting from both One and Two's falsely cherubic lips signified the beginning of my end. I had no more than greeted them at the door before I was drenched in sweat and my once acceptable and nearly shinny ringlets frizzed into outer space (courtesy Gabers and his grabby, ever so grubby little hands...he'll get his though; have you seen his hair?). I was deaf in one ear whilst the look of shame crept up on my face. Yep, not five minutes after my children arrived was I seen covered in goo and feverishly yelling "abort mission, abort!".

It took three adults, six earplugs (ok, ok...figuratively) one stroller, many concerned looks, my not so nice mommy voice, and a full hour to get us back out the door.

Thank the gods they weren't there for the ceremony. That was my time to pretend I was a person again.

I'd post a picture of Miss Emma Jayne, but I didn't even try to get one of her. Yes, she was that much fun.

Well, well...it was their first wedding, and their last.

Including their own.

Good thing mommy love is unconditional, eh?

Weddings, however...not so much.

No He Didn't...

2007-10-16T07:31:00.001-07:00

Yes, yes he did.

No, we don't have a dog.

We have a Gabe.

And the graveyard of books grows as we bury another.

Poor Emma Jayne.

Pigtails for Gabi

2007-10-04T13:19:00.000-07:00

At the end of August the world lost a beautiful little girl following her heart surgery. She just never made it back home. Gabriele was not only born with a heart defect, but she was also born with the same extra chromosome that Miss Emma was.

She was only seven months old.

Gabi Acker 01/12/2007 to 08/20/2007

In honor of Gabi a beautiful book was made called "Pigtails for Gabi" and given to her parents as a tribute to their much loved and eternally missed wee one. We did not make the book's production in time, but Micah and Jason, if you are reading, here is our Gaber's tribute to your Gabbers.

And yes. He does make a beautiful little girl. He's secure in his masculinity though, so it's all good.

We miss you Gabi.

The Shared Bedroom

2007-09-29T15:21:00.000-07:00

Looks like this:

And sounds like this:

Music to my ears (though my eyes are bleeding a bit from the blinding mess of every single naptime adventure).

A Day of Remembrance

2007-09-11T12:05:00.000-07:00

My Lil' Smarty Pants

2007-09-11T08:51:00.000-07:00

A few nights, after I had deposited Gabers securely into his crib for another night of rest and relaxation (mine, of course) while his big sister and I revisited the joys of potty training (again), I heard him giggling away ferociously. I came back in to their room for the prerequisite check up and found him in the classic triangle position - head on the mattress, legs straight, tiny butt (oh how I wish that was from my side of the family) in the air. Of course I made quite a fuss as we both laughed and I instructed (demanded) "Do it again! Do it again!" And he did!

I am a wee bit out of touch with typical development as neither he nor his sister tend to break any milestone records, so needless to say, I was really surprised that 1) he understood me and 2) he could follow direction. I decided it would be best to name the action and I began telling him to "Do the triangle, Gabe, do it again!" And he would. We laughed and laughed as I turned into a virtual clappin' machine - producing an impressive one woman cheerleading section with the power to bruise her own palms during times of celebration.

And repeat.

This went on until we had to get down to the nitty gritty of our bedtime ritual..

The next morning I decided to test him a bit as he was waking up. He had no sooner rubbed his sleepy eyes than I was shouting "Do the triangle Gabe!", and he did (Poor kid; this is likely his future; to be wiping the sleep drool from his mouth as his mother yells "impress me! Impress me!" over and over).

I virtually swooned at the sight of my little smarty pants listening and following directions. I plan to pack enough pride and enjoyment out of the (what I can only assume will be) mere months of good listening ears and deft obedience before the ensuing years of apparent deafness and defiance begin. That's not even getting into adolescence.

Fast forward a day or two and some little curly haired boy has finally learned to clap...again with the pride, it's Gabers! Of course, his father has assured me that it is merely my milestone of noticing that has been achieved (said with an exaggerated indifference "He has been doing that for daaaaaays"). Nonetheless, I have a clapping, following direction, smarty pants little boy!

Can I get a Woo Hoo?

Last night, prompted by the gales of delight coming from the shorties' bedroom (which usually means something is being eaten, shredded, broken, or defaced - not a good sign) I sucked up my fears, deftly grabbed the disinfectant and band aids, and peeked into their room with trepidation.

On first glance I was very pleased to find all the furniture standing (even in semi-correct placement), everybody alive, and no dolls lying helplessly next to their torn limbs, stuffing askew. On second glance I was thrilled to see Emma giggling next to Gabe's crib while he flawlessly executed the complete choreography of our triangle dance. He triangled endlessly, only coming up long enough to preform a little two step of proud applause for himself, of which his siter immediately joined in. The children's' amusement was infectious and I of course I couldn't resist the fun. I did a bit of the triangle myself that night. As a threesome we giggled and clapped long after bedtime, relishing in Gabe's developmental moment and the joy of each other.

Smarty pants.

I hope he always claps for himself.

Otherwise I'll look crazy.

All Choked Up

2007-07-12T11:43:00.000-07:00

Yep. All choked up.

Baby Kisses!

2007-07-06T12:35:00.001-07:00

Never was there a sweeter moment than the first time your baby kissed you. Nevermind the sloppy open mouth or the wet slobber; realizing that indeed, you do know just where those lips have been and no it wasn't a clean place; regardless of the fact that under no circumstances would you ever allow anyone else to kiss you the way your baby does, you positively melt when your wee one plants that first piece o'love upon your (now nice and dirty) lips.

Best. Milestone. Ever.

All I have to do is ask hm "Can I have a kiss" and the slobbery goodness begins.

Yippee!

Let the mouthwash flow freely!

Call him what you will, just don't call him late for dinner...

2007-07-06T07:50:00.001-07:00

Celebrating His Independence...

2007-07-04T22:15:00.000-07:00

Today I Pronounce You Officallly HEALED

2007-06-26T07:52:00.000-07:00

Long time no post. My most abundant apologies my cyber friends, frenemies, and hit

You're good, I'm bad. You're pretty, I'm not. You're smart...me? Not so much...

Blah, blah, blah.

Go forward basis, oui?

Today is the day that Gabers is officially done with his recovery period. Today will be the first time we have picked Gabers up under the arms for six weeks. B-bye awkward cradle hold; c'est le vie scoop method. Hello actual way to hold onto a 19lb escape artist trying to give his mother a heart attack as he slips this way and that.

Of course now I am having anxiety attacks about his sternum splitting open, but I have decided to be strong. The baby will never know of my impending neurosis. Or at least not until he is a grown man and can afford his own therapy bills.

Last Friday we met with Dr. G for Gabe's second post op appointment and followup echo cardiogram. With the help of the ultrasound tech, who deftly trapped his arm beneath him in a blanket, and a nurse who restrained his rubber legs, my hand holding technique was successful enough to take some purty pictures of his busy heart. Did I mention that three of us, all grown women, were forced to make utter fools of ourselves to entertain the ever fickle Gabriel; a boy known for his back arching when all else fails?

Yep. Kid definitely takes after me.

We are screwed.

But onto the echo results...

The great news is that for a repair so close to the valve it was more likely for the valve itself to show stenosis or leakage and neither is present. His pulses are great, the incision has healed beautifully (excepting the new found bump that juts out from his sternum...but bumps will be bumps...), and his heart function is 100%. SATs are 100% as they have been since the ASO. His vitals (being his heart rate and blood pressure) are definitely on the high end of normal, but are still in the normal range for his age. Dr. G assures me when Gabe is around three years old his vitals will no longer freak out unsuspecting doctors (there was an incident with our family doctor around the New Year that had me hyperventilating and poor Dr. G got the pleasure of calming me down). Dr. Y, take that!

WooHoo! We did not injure his heart in an attempt to repair it!

The echo did, however, show that Gabe has pulmonary stenosis again, but not from scar tissue. When they did the repair they cut out the scar tissue and ended up shortening the space between the pulmonary root and the branch for the left and right arteries. The stenosis is due to that, which seems as though it would be expected due to the nature of the repair. When he went into surgery he had a gradient of 90-100 (severe stenosis); now it is at about 30 which Dr. G defines as "mildish". Dr. G. thinks there is about a fifty percent that the area will outgrow the stenosis, or rather will "grow with him" and about a fifty percent chance he will need a balloon when he is four or five years old to enlarge the area. Of course, as we well know, surgery is never out of the question, but is not anticipated.

Seeing as how all I usually hear when Dr. G. speaks to me is "Yada, yada, yada...surgery" and then nothing as he quietly passes the tissues to me and focuses all of his attention on WonderLove, the man who doesn't think the normal heart beats due to "magic", I can tell you exactly what I heard this time:

"No further surgical intervention is anticipated".

Oh, and, as with any appointment that WonderLove misses:

"Take this drawing home to your husband. Have him call me if he has any questions". Methinks Dr. G doesn't quite trust me yet. I guess I probably should have kept that whole "magic" thing to myself. Lessons learned...

Gabers is almost 19 lbs and about 30 inches which has him hugging his growth curve well. Long and skinny. That's the way I make 'em.

The nasty ol' Lasix has been thrown away, per doctor orders, and as of today all restrictions are lifted! No meds, no nothin'. We go back in 3-4 months for a re-check and will have another echo in about 6 months. Until then I am supposed to relax.

I made him write it down though.

"Gabe is doing great".

It's official.

Cardiac Pioneers: The Loons of Medical History

2007-06-07T07:54:00.000-07:00

I have only just begun to explore the history of cardiology and cardiac thoracic surgery and, considering my childish grasp on the nature of biology coupled with my rudimentary understanding of basic anatomy, I have been incredibly surprised to discover my recent fascination with it. You would think this fascination would lead to an increased understanding of the field, but instead it really has just provided me with lots of obscure triva. In fact, when asked about normal heart functioning (which, again with the surprises, people have actually asked moi), my standard response still is "Magic". As an aside, everytime I say that a little part of my oddly and oh so nerdly science oriented husband dies inside and Dr. G. hangs his head in shame...Poor guys.

But I digress. Will wonders never cease?

My fascination with the history of cardiology lies in the fact that these medical pioneers; these men and occasionally women whose legacy would save my son's life; these heroes of science, were insane. Total loons. They got their crazy on in a way I can only dream about.

Point in case: Werner Forssmann, the first man to perform a cardiac catheterization on a human being.

As a young surgical resident in Germany, Forssmann had been struggling to find a way to safely inject resuscitation medication into the heart during a period in medicine which defined entry into the heart as fatal. Period. It was for this goal that Forssmann developed the theory of cardiac catheterization, but was forbidden to attempt the experimental procedure on real live breathing people...for obvious reasons. So what did this innovative father of cardiac medicine do?

He did it on himself.

Oh my god.

In 1929 he anesthetized his elbow, inserted a cannula into his own antecubital vein, pushed a catheter through it until he felt it hit his right atrium, then marched himself over to an Xray machine and took a pretty picture of it to prove his success. Plus, the fact that he was still alive was a pretty good indicator that he had been right all along.

See? Total loon.

And what did he receive for his momentous discovery? A pink slip and was ostracized by the cardiac community for the next decade. They thought he was looney tunes too...

He did get his props in the end. Obviously his research pushed cardiology into a new era and was the basis for the field as we know it today. To date Gabe has already had two cardiac catheterizations performed and one of them saved his life. In 1956 Forssmann was awarded, together with André Cournand and Dickinson W. Richards, the Nobel Prize for Physiology.

One may compare the art of healing with a work of art, which from different standpoints and under different lighting reveals ever new and surprising beauty.

You can read the rest of his Noble Lecture here.

Me? I thank the gos every day for all the loons in medicine. If they hadn't gotten their crazy on, the world would be a very, very different place.

A lonely place.

Tragedy Defined

2007-06-05T07:44:00.000-07:00

A mission of hope turned tragic when a plane carrying an organ to a patient awaiting a transplant at the University of Michigan Hospital crashed into Lake Michigan on Monday afternoon. Six members of the U-M Survival Flight Team were on board the Cessna Citation 550 when it went into Lake Michigan at 5:05 p.m. Detroit time en route to Willow Run Airport from Milwaukee's General Mitchell International Airport.

Read the full story here.

Who was on board

• Dr. Martinus (Martin) Spoor, a cardiac surgeon on the University of Michigan faculty since 2003
• Dr. David Ashburn, a physician-in-training in pediatric cardiothoracic surgery
• Richard Chenault II, a transplant donation specialist with the U-M Transplant Program
• Rick LaPensee, transplant donation specialist with the U-M Transplant Program
• Dennis Hoyes, a Marlin Air pilot
• Bill Serra, a Marlin Air pilot

Rick LaPensee Dr. Martinus Spoor Dr. David Ashburn

My heart is heavy today and it's flag is at half mast. These six men were true American heros who dedicated their lives to saving others. This loss is devestating in the heart world.

May their family and loved ones one day find peace again.

Bed Head and Bottles

2007-06-03T12:01:00.000-07:00

on this fine Sunday morn...

Heartbreaker

2007-05-31T08:19:00.000-07:00

Say no to this face. Go ahead...just try.

The Good Life

2007-05-30T08:46:00.000-07:00

As of yesterday it has been two weeks since Gabe's surgery and he is recovering amazingly well. He is as full of giggles and spunk as ever; just happy to be here. He seems completely unbothered by his freshly healed incision and what I would think is still a tender chest. We have been keeping him strapped down in various baby containers (i.e swing, carseat, highchair) as much as possible because the second we unleash him he is on his tummy, raring to go. His rambunctiousness is helping me bite my nails and causing that telltale vein in his daddy's forehead to pop out with a fierceness. Obviously Gabers is doing a bit better than we are, but we are trying to hold our own.

Did I mention Gabers is fond of banging his chest as hard as he can against the rim of his highchair...repeatedly? Oh my god.

That poor kid is bored to tears being locked down most of the time. I consulted with his cardiologist's office and they thing we can start setting him free more. Yay for Gabe; stubby, sad, damaged, and abused nails for me. Goof thing I don't have a maincurist or else she would be pissed.

Real life has resumed and we all are players in it again. We are anxiously awaiting for the six week recovery period to be over so we will all feel like real people again.

Gabe had his follow up with his cardiologist last Friday and everything looks good; it's all working like it is supposed to. His Lasix dosage was cut in half and he will remain on it until his next appointment in one month. His chest x-ray was clear as day.

He cried every single time a nurse came near him though. The minute the gloves came on, Gabe came undone. That was truly heartbreaking.

It looks like he is carrying more than just the one scar from surgery. Poor kiddo.

As well as Gabers is doing, unfortunately I can't say the same about his hair. I guess that is the fate of the sponge bathed though, isn't it? Poor, poor baby afro...it's needs some tender loving care and a weed-wacker. Officially we have been given the okay to remove the Steri-Strips across his incision (which seem to be clinging on for dear life) and actually give him a real bath, but even this milestone makes me a bit anxious. It's times like these that I need a valium or two.

Where is a shady doctor with a prescription pad when I need one? Alas...they don't do that anymore. I can only read about it in books from 1960. Lucky housewives with their doctors of ill repute and their non medicinal medicine.

Yet amidst all of the commotion...what with the healing, the trapping, the trying to escape, the boredom, Gabers is still growing. He has just learned how to play peek-a-boo and it couldn't be more endearing. He covers his eyes with his hands, waits for you to ask "Where's Gabe" (even though we all know exactly where he is),then pulls them down victoriously and laughs hysterically. It is adorable.

Yep. Life is good.

Even if he is pulling his sister's hair a bit more of late.

Post Op: Day 4

2007-05-19T12:40:00.000-07:00

At roughly noon o' clock today Gabers waved goodbye to the intermediate care unit and hello to his own snuggly bed. His cardiologist wrote a prescription for Lasix (a diuretic common following heart surgery); his nurse wrote down the correct Tylenol dosage; his surgeon removed his bandaids and declared him a patient no more!

We are home.

Bye Bye hospital jammies.

Post Op: Day 3

2007-05-18T08:10:00.000-07:00

Stepdown unit, here we come!

Gabe has just been discharged from the PICU an admitted to the Intermediate Care Unit! WooHoo! No more falling asleep on the edge of a crib rail for us...it's sofa bed city from now on! The stepdown unit affords us a private, spacious, and window filled room of sunlight with accommodations for us and Gabe. We have our own bathroom, faux kitchen area (sans stove and other fire hazards, of course), television and DVD player for those "must see" events.

Of course, for us, the only must see event is happening right now. Gabers is rapidly shedding lines, tubes, medicine, and equipment like a snake sheds its' skin. He is down to a central line that isn't even hooked up to anything right now, but which they will use to give him his beloved morphine when he gets a bit too crabby or rambunctious.

At this very moment Gabe is sitting up, wearing jammies, and eating cheerios. If he keeps this behaviour up, it looks like they'll kick us to the curb as early as Sunday or Monday.

Can I get a WooHoo?!!!

Post Op: Day 2

2007-05-17T09:25:00.000-07:00

Back on the morphine train again...

He's a Little Fiesty

2007-05-16T11:13:00.000-07:00

said the laughing nurse. "Try not to get hit by a flailing leg" he warned.

Gabers is has been wide awake all morning, limbs flying everywhere. He is off the vent and breathing just fine on his own. He is down to just Tylenol for pain medication. Less than 24 hours after leaving the OR for Open Heart Surgery our kiddo is breathing on his own, off of the narcotics, and turning into a giant ruckus.

Watch out PICU, Gabe is in the house.

Just Breathe...

2007-05-15T12:09:00.000-07:00

Gabers is out of surgery and in recovery. The surgery was a complete success and it looks hopeful that any future interventions would be performed in the cath lab and not the OR. Gabe has grown some collateral arteries that may cause a problem in the future, but it looks like they can be nipped in the bud in the cath lab as well. It also looks like his right heart pressure will always be a bit outside the norm, but should still be safe and not need medication. Or at least that is the best I could understand after the fact as all I could here when our hero, the surgeon was briefing me was"blah, blah, blah....off bypass....blah, blah, blah....success....blah, blah, blah". Thank the gods my father was speaking English when I so obviously wasn't and was able to act as a liaison in my time of need. Wouldn't you know the one time K was out of the room was when the surgeon arrived? And everybody knows the technicalities are K's forte...me, I'm just trying to breathe. In and out. In and out.

I do know that Gabe is doing great right now.

He is on a ventilator, but they plan on extubating him tomorrow morning. He is on minimal support and all of his numbers look excellent. He has two chest tubes inserted for drainage; standard following open heart surgery (which refers to the chest status, not the heart). Everyone seems hopeful that he will be breathing and eating on his own tomorrow.
He is also receiving a blood transfusion as his hemoglobin is a bit low. As my mother and I both give good hemoglobin, I take great comfort in the knowledge that our blood is flowing through his veins.

He looks so much better than I thought he would. Even hooked up to all the equipment he looks peaceful...not like he is in any pain at all.

We saw him immediately in recovery thanks to his nurse who sped up protocol so we could be with him. Oh Nurse D, how we love thee! D was his nurse once upon a time in the days of the ASO, and remembered him the second she saw his lovable mug and unruly SupaFro. He is in excellent hands, and so are we.

Right now I am just enjoying being able to breathe again. I think my blood pressure has crept out of the "Danger Will Robinson, Danger!" zone and I am beginning to feel like a human again. Maybe not myself, but at least like the right species. Baby steps for sure.

As with all Open Heart Surgeries, the next 12-24 hours will be critical, but so far he is doing just great. Relief is virtually seeping out of my pores and an intense gratitude is settling in. Thank you all for being there with us and please keep Gabers in your hearts.

It means everything to us right now.

Leaving for the Hospital

2007-05-15T02:42:00.000-07:00

Live Long, Laugh Much, Love Always.

Blood Banks and Meme Makes

2007-05-10T07:43:00.000-07:00

This afternoon I am off to the blood bank. My mother, myself, and a favorite co-worker are all donating our O+ blood for Gabers surgery on Tuesday. It's not much, but really it's all I can do for him. The thought of my blood running through his veins is comforting (unless it's bad blood - no bad blood for my baby).

While I wait for the copious amount of water I've been drinking seep it's way into my bloodstream, I've got 7 random things about myself to share with you all. I know, I know...lucky you, eh? Nancy tagged me with this meme to help get my mind off of net Tuesday, and as it was very kind of her to think of me, I can't let her down. At least not too much.

1. Most vegetables scare me, yet I was a vegetarian in my youth. I called myself a fruitarian.

2. I comfort myself by running the edges of my favorite sheet between my finger and toes, tickling myself. Emma has never seen me do this, but she does it too.

3. I hate to cook. Which is good because I suck at it.

4. I've been to Paris.

5. I lived in a closet for a month in college. Not kidding. A closet. I paid rent for it too.

6. I have a tattoo.

7. Today will be the first time I have ever donated blood.

Now I am faced with the daunting task of tagging seven other people who will hopefully realize that they've been hit. I think I'm going to try on a whim with those that seem to have the longest attention spans. Awesome Mom, Jenni, Cassie, Jen, Eka, Jodi (and yes, I still owe you a sibling meme - again with me and the sucking), and last but not least Mauzy.

Tag - You're it!

Misty Eyed

2007-05-09T06:51:00.000-07:00

Thank you blogosphere, for embracing Gabe and flooding the SuperInformation Highway with such good vibrations. I have been deeply moved by such an overwhelming response.

A Cop, A Nurse, 3 Dogs, and Maybe Baby?

Adventures of An Awsome (Sometimes) Mother

A Journey of Three

All 4 My Gals

Are We Having Fun Yet?

It's Cool to be a Flaugh

Jack's Blog

Just a Little Bit of Something Extra

Kim's Treasures and Snares

Mom of 12 and Loving it

Our Baby Story

Our Vietnamese Ladybug

Pinwheels

Prince Vince Meets the World

Quinn's Blog

Raising Joey

Ramblings from Stessie

Terrible Palsy

The Chase is On

The NEW Caleb Nation

This Old (Minneapolis) House

Three Jones

'til my head falls off

Unringing the Bell

Wonderbliss

Simply said, thank you.

Finding My Faith

2007-05-08T08:56:00.000-07:00

My faith exists as a dichotomy. I have always had an unwavering faith in the goodness of the universe and it's powewr as I make my way through it. I have wrapped myself in the wise adage "karma is destiny" and it has proved itself to be a constant force in my life; the energy I have sent out has come back to me. I have been blessed many times over and I often attribute it to my universal belief that everything will be okay in the end; that I will know more bliss than suffering; more joy than pain.

Yet, as Gabe's heart surgery quickly approaches I am struggling to find that confidence; that serenity. Since Gabriel's birth I have been welcomed into the heart community with open arms. I have celebrated with it, but I have also cried with it. Too many times. I have become aware of a vast array of complications and errors, mishaps and oversights. I am desperately trying to remember all the miracles I have been luckily enough to watch unfold and let their light obscure the darkness I am touched by, but it is a struggle.

I am struggling to find my faith. I am struggling to emerge from the shadows. I am struggling to believe. And I need to believe. I need to believe for Gabe.

I am trying to create our destiny right now, even as I type this. I am envisioning a smooth surgery; uneventful, successful, healing, and done. Can I ask you, oh blogosphere, to do the same? To add the power of your energy to mine so that collectively we might surround Gabe as his body is invaded again. So that we might life him up and create a reality of Gabe with a repaired heart, healthy again.

I have made a button (no small feat, trust me) that I hope my fellow bloggers will add to their websites, one that will remind cyberspace to think of Gabe during his surgery. If I have played my cards right, the code for the button should magically appear. I (crosses fingers) have even made a small sidebar button and a large post button, all for your conveience, my friends. Will wonders never cease? Just use the scrollbar and copy the code, paste it onto your blog and a victory for the techno impaired will have been won!

Thank you my friends. I wish this wasn't so hard.

I can't wait until I write a letter just like this one.

Until then, let the good vibrations roll...

Ready Set Bumbo!

2007-05-04T06:59:00.000-07:00

This little video has boomeranged around cyberspace for a while, so this may be deja vu for some of you. For me, well I live under a rock, so this was brand spanking new and tons-o-fun.

The creators of "Ready Set Bumbo" are obviously in possession of that ever elusive thing known as "spare time" and while many have speculated that they are first time parents I would guess this masterpiece is the work of an aunt or uncle. They have white wall to wall plush carpet. White. Thier house is absolutely pristine. True, harder to do with a herd of kiddos than with a singleton (though I think we all know that depends on the kid, doesn't it), but a this is a baby. They are all little machines shooting out grossness of all kinds in a fairly constant manner...not to mention that they, themselves, are virtual goo magnets. Gabe can't sit down for five minutes without being covered in something that disgusts me.

Unconditional love is a good thing, eh?

I never had that kind of spare time when Emma was a lonesome child.

Not. Once.

Maybe they borrowed a baby. Maybe they borrowed a house. Whatever. All I want to know is where I can get a time warping Bumbo seat and a taser. Forget about Gabe...I want it for me.

Where's an evil genius when you need one?

Wordless Wednesday

2007-05-02T14:00:00.000-07:00

The Thinker

2007-04-26T12:10:00.000-07:00

Bless her heart, Nancy has nominated my fledgling little blogspot, Gabriel's Heart, for a Thinking Blogger Award. I am not quite sure it is deserved, but I will greedily snatch up like so many preschoolers before me , shouting "Mine! Mine!" before she changes her well intentioned mind. Nancy, sweetie, you give good love. Thank you.

I'd also like to thank the little people whom have made my foray into the blogosphere possible. Miss Emma Jayne and Gabe the Babe, the minute you get up from naptime, I promise to cover you both in kisses from head to toe.

Now that I've conquered my acceptance speech, I find myself faced with the task of crowning five blogging virtuosos...all of whom deserve this award much more than myself. I have a hard time believing these bloggers haven't yet been bestowed with said award, but as of yet I haven't been able to prove otherwise. So (even if I am double or triple bequeathing you) get your beauty queen screams a-ready, because today I crown thee...

1) Eka of Wonderbliss fame. She is another heart mommy whose self proclaimed love of "pigtails and overalls and silly, happy things" is every bit as endearing as her sharp, wry, and oh-so witty humor. This post is an excellent example of why I admire her so and this one, well this one will have you praying you don't wet yourself during your hysterical fit of laughter. Good luck with that, by the way.

2) Dave Hingsburger at Chewing the Fat has an uncanny ability to fully realize a moment; his words make small snippets from his life timeless. His blog is the camera I always wanted to record my own life with...but, of course, with more meaning and grace than mine would ever have (I'm awfully cheap). Hug, huge fan.

*note to readers - Lovely and Amazing also awarded Mr. Hingsburger, but I still don't think he knows that he has been crowned. I recommend clicking on his link until he figures it out, kay?*

3) B at One foreigner's perspective of life in Indonesia is not only a gifted writer, wife, mother, advocate, feminist, and achiever she is also beautiful person who defies labels. She collects them through her apparent endless source of energy, but she doesn't need them. Recently relocated to Indonesia with her family (and with Baby B on the way) she will charm you endlessly with her insight and wit...whether discussing women's rights or navigating her way through a culture sans Target (that's pronounced Tar-jay).

4) Postcards from Holland, a a collective blog with contributors across blogland. These essays, both inspirational and heartbreaking, are ripe with honesty, tenderness, and are the epitome of powerful. While it is in decidedly poor taste for me to award a blog I actually belong to, let's just throw some duct tape cross that ol' Emily Post mouth and it's lectures about manners and pass the award to all of the other contributors. Their voices are profoundly moving and should be heard; if you have yet to hear the strength to their timbre, I couldn't encourage you to go listen. Right now.

5) Another collective blog that I love is Disability Studies, Temple U. The scholars that contribute here explore every kind of disability issue one could imagine...and then some! This blog is a great source of information, discourse, and is always thought provoking. These academics never fail to celebrate a victory in the disability community or miss a chance to advocate for societal inclusion. A must read...for everybody.

Without further ado, consider yourself presented.

If you live under a rock and have no idea what this is about (inwhich case you would live next to me - I just found out that Britney Spears shaved her head in a fit of twenty-something, drug induced, mama vs. popstar, teenage angst ) visit the creator of the awards ceremony and learn all about the academy rules.

SuperCute

2007-04-16T06:27:00.000-07:00

Have You Gotten Your Vote On Yet?

2007-04-12T14:30:00.000-07:00

No pressure. None whatsoever. Really. Even though all of the cool kids are voting for Gabriel's Heart (okay, one of the cool kids), you are an individual. You do what you want.

Of course, if you want to vote, that's cool too.

And yet it begins...

2007-04-12T06:11:00.000-07:00

After Emma was born and almost immediately diagnosed with Down syndrome, I had nightmares for months. Horrible, horrible dreams that would leave me feeling frightened and helpless as I would wake up in a cold sweat with tears running down my cheek.
The worst one was one that referenced my own childhood. When I was in the second grade I moved out of state thus changing school districts. The district I came from had recently instituted a new teaching method regarding reading; students were taught to sound out the first syllable and the last, then were required to deduce the word based on the context of the sentence. Phonics became a four letter word and that year, my teachers failed me miserably; the school failed all of us. Period. Regardless of the fact that the method was repealed the year after I left, it had still had enough time to do damage. My new school knew it too.

I was immediately enrolled in Title One for reading, which was a special education class. It was very successful and after mere months I was discharged from the class. I would continue to be accepted into enriched reading classes and eventually gifted English programs.

But, at the time, it was not cool.

Not at all. I dreaded it every day. It wasn't the class itself I despised, which was actually pretty fun, it was the social stigma of the "special ed" class that I loathed - even in the second grade. Invariably each day our main class would split into groups during the reading period and that was the beginning of the end, for me. For some horrid reason known only by the grace of the gods, the powers that be saw fit to label the groups as such - the "gold" group, the "silver" group, and the "brown" group. Go ahead, guess which group was which.

Turns out, Brown did do alot for me, but it didn't change the fact that getting to brown was the definition of childhood trauma.

Every time the brown group was called, the entire class would titter and jeer as mocking whispers slipped out under their breath. They barely, just barely, stopped short of pointing at me and tripping me as I walked by. I quickly learned to avert my eyes and stare at the floor as I prayed for my burning cheeks to return to their usual, unremarkable color. Those burning cheeks fed the fire around me; as soon as my cheeks lit up, my peers knew that their jeering mattered.

And, to make matters worse, the brown group was the only group which was removed from the class.

The older I get, the worse time ravages my memory and the more poetic license my memories seems to take upon themselves. Sometimes I am not positive if an event really happened to me, or if I read it in a book (a pitfall of being a childhood bookworm, I guess). In retrospect, I am sure that we didn't really have our "brown" class in a dingy and crowed coat closet in the basement, but that is how I remember it. That is just how traumatic the entire ordeal was, one in which I slipped into the role of an undeniable social outcast. A social outcast at the ripe old age of seven.

Well...it turned out that in the deepest recesses of my own questionable psyche, this was one of my most profound fears for Emma. And for us. For all of us. Beneath the surface my fear that Emma wouldn't be accepted, and worse that she would be mocked, raged. I saw a future inwhich my family would be the punchline of society's greatest jokes; never allowed to tell the joke, never able to laugh with the jokesters, but always hearing the laughter.

Never finding camaraderie anywhere but within our own family.

I realized how deep seeded those fears were when I began dreaming about them. At night there wasn't any place for me to hide from them. During the restless slumber of those first few months, my subconscious grappled with what my conscious self could only cry about. I was my very most vulnerable then.

My dreamtime life climaxed with a nightmare that may sound innocuous to some; humorous to others, and definitely not frightening to most, but for me it was terrifying. I dreamt that I took baby Emma with me to our local public library, the bastion of learning and the possessor of the great knowledge that it is. I always loved libraries as a child and in my dream, I was so excited to share this world of possibilities with her. But when we arrived, we were refused entrance, barred from opening the door. The resource librarian met us there as we futilely tried to gain admittance, and with a violent fervor she redeemed my library card. She shredded it before my very eyes, and without mercy told me that we were no longer allowed in the public library. Our family membership had been revoked, and from then forward, we were only allowed in the Brown library.
Pretty much says it all, eh?

A few weeks later I had another dream about Emma. I dreamt that I was still pregnant with her, but this time we knew she had an extra chromosome. My dream self was very anxious about her birth; so worried that there would be a problem. I was terrified that we made the wrong choice to bring her into the world and that she wouldn't be okay. That we wouldn't be okay. In my surreal dreamworld, my husband kept assuring me that she would be fine; that we made the best choice ever.

As the dream continued she was finally born, but instead of my Emma, the baby that was born was somebody else. He was the most beautiful blond little baby boy; the most perfect infant ever. An elusive vision of perfection, this baby still visits me in my dreams to this day, but he most certainly was not Emma. He did not have slanted eyes or a broad face; his chromosomes were just as perfect as his Aryan coloring.

The delivery room was ripe with oohing and awing over the new baby. With disbelief I realized that I was the only one who realized that this baby boy, the vision of perfection, wasn't the baby I was supposed to have. Nobody else realized that this was the wrong baby. Not my child. He was lovely, but he wasn't Emma...not even one bit. He wasn't the baby I wanted nor the one I needed, and my baby was missing. Gone. Poof.

I forced myself awake as I didn't want to be in this dream any more. I woke violently and in a fierce panic. The loss and sorrow I felt was overwhelming. There were tears dripping from my eyelashes.

It took a few minutes for me to remember myself; to remember my life. I looked over at my lovely and amazing Emma Jayne, sleeping so peacefully in her bassinet, and my relief was just as overwhelming as my panic had been. Of course I inappropriately woke her up as I covered her in kisses and embraced her with my love.

After a moment of reflection, I realized that my dream signified not just my evolving acceptance of Emma's diagnosis, but also my emerging celebration of her very essence. My sorrow at discovering a perfect blond baby in her stead symbolized the beginning of the end of my grieving...I was no longer holding Shiva for the baby I didn't have. I had finally seen the baby I did have. And I loved her. So. Much.

When Gabe was born, I stopped having nightmares after his surgery. I didn't have to grapple with his diagnosis like I did with Emma's, because his could be fixed. Of course I knew there could be complications and that he would always be carefully watched, but his diagnosis didn't challenge everything I thought I knew about the value of a lifetime. His diagnosis didn't represent a shift in our familial paradigm; it was a mechanical problem that could be rectified. While the memory would always haunt us, the result would be an ordinary life...or at least, our ordinary. Given time he could adjust to us, we wouldn't have to adjust to him. Gabe would heal and we would resume life as we knew it. This chapter would close and we wouldn't have to write a new one as we did with Emma.

I now fear that may change.

With Gabe's upcoming surgery it is painfully obvious that a second chapter is being written and, regardless of whether I want to read it or not, I have to. It is not over.

Though this surgery should "fix" this problem, I have to recognize that it may never be "over". Every heart is unique and so is every heart defect. Gabe's defects (I couldn't despise that phrase more) are "non-issues" now, but we are all at the mercy of Father Time and whatever whim he may have, is a whim we have to live. So far Gabe has been very healthy, even in light of his never ending cootie train and chest cold caboose. He isn't on any medications and doesn't have any restrictions...so far he seems just like any other baby, in spite of his medical history. But he isn't just like any other baby (we don't have those kinds of babies anyway). No matter how much I want him to be.

The possibility of a hospital life is lurking around the corner. Along with the countdown clock. The door to that life is opening as we speak and this surgery will swing it in either direction. Now that, that is hard for me to accept. That I am grappling with.

Last night I had a nightmare. A vivid, pulsating, silent scream, heart thumper of a nightmare.

We were at the hospital the night before Gabe's surgery. We were, amazingly, completely relaxed. We didn't think it was a big deal at all. We were socializing with friends at the hospital...that is how unaffected we were by the impending patch surgery.

As I chatted effortlessly away, K went to check with Dr. G (who interestingly was a woman) on his pre-surgery checkup. When K came back he told me that Dr. G. wasn't sure they would do the surgery tomorrow...maybe not at all. She thought they may have to do the Switch again; that it could be failing. That he repair was failing and we would have to start all over again, from the beginning. We would have to wait while they decided.

I woke up feeling terrified and utterly helpless. Tears streaming down my face, my heart pounding. I had to catch my breath and wait for my memory to flood back and comfort me. Except, it isn't all that comforting right now.

And with that dream, it begins.

Little Hands, Big Mouth

2007-04-07T19:44:00.000-07:00

Pretty much says how my day went, no?

Message of the Day

2007-04-05T10:41:00.000-07:00

No sooner than had I hit the post button on my last entry than I received this in my inbox. Now is that a message or what?

Today's Message of the Day is:

Life is short, Break the rules, Forgive quickly, Kiss slowly, Love truly, Laugh uncontrollably, And never regret anything that made you smile.

Life may not be the party we hoped for, but while we're here we should dance....

Panic Attack

2007-04-05T07:34:00.000-07:00

We have a date scheduled for Gabe's patch surgery.

For those of you that may have missed my anxiety ridden posts about the impending surgery, let me give you a bit o' background. Gabe had the Arterial Switch Operation performed when he was 12 days old and, thank the gods, it was a complete success. He was breathing on his own and nursing within a day or so of surgery; he was released from the hospital on the seventh day following the Switch. His recovery was excellent; fast and without complication.

Fast forward to the end of October when he had an echocardiogram performed to check his heart function about four months post surgery. Little did we know we would find out the good, the bad and the ugly.

The Good: Gabe's heart function and pulses were superb. His pressures were fine, as was his weight. He was doing very well.

How could you even have "the bad" following such an assessment?
.
Sigh.

The Bad: Gabers was in the 10-20% of kiddos that developed scar tissue due to the ASO. It developed at the switch site on his pulmonary artery and is technically known as Supra Valvular Pulmonary Stenosis. Basically this means that his pulmonary artery has stopped growing at the switch site because scar tissue is obstructing it, but the rest of the artery is growing as it should. Imagine it as the waistline every woman wants to have, but unfortunately this is the one situation in which it is much preferable to carry a bit more weight; the ideal figure is straight and wide...very wide. Sooner, rather than later, the width discrepancy would cause the pressure in his heart to build until the left side of his heart was working so hard to pump this river of blood through that tiny creek of an artery, that it would undoubtedly fail.

Obviously not cool.

The Ugly: The only way to rectify the problem is through open chest heart surgery. As the pulmonary artery is on the outside of the heart, his heart doesn't actually have to be split open again, but his chest does. A balloon dilation via cardiac catherterization was a possibility, but it would only delay the inevitable.

U-G-L-Y You Ain't Got No Alibi - You Ugly: If a balloon dilation didn't work, the surgery would need to be done within the next six months. Though the surgery is a much simpler procedure than what Gabe has already endured; basically they just cut out the scar tissue and patch it with a piece of Dacron (plastic...it is plastic) using a circular suture line than will reduce the risk of a stenotic recurrence. That is right, after all of this, Gabe will be back to his original risk of 10-20% for stenosis occurring, the same for any child undergoing heart surgery.

Beyond the Valley of Ugo: The piece of plastic they will put into Gabe's heart won't grow with him. If the surgery could be delayed until he was a toddler or so, then there would be a significantly improved chance they could widen the artery enough to last a lifetime. If the surgery was to occur during his infancy, the chances of that would be next to nil. We would be looking at another surgery in his adolescence.

Did I mention that Dr. G has never had a patient develop stenosis this quickly following the ASO?

I did not take it well.

I abandoned blogging for a season. I cried everyday. Sir Snores Alot had nightmares he didn't tell me about because he was trying to keep me calm. He still has them. I still cry at night.

At the begining of January we went back for another echo to see if his artery had grown at all in the stenotic area; in the area I had been willing to grow. No such luck...apparently the force is not strong with me. Not at all.

At the end of January we took Gabe in for the Cath procedure so they could measure the exact pressures in his heart, take pictures of the stenotic area, and attempt the balloon dilation. Gabers sailed through the cath and made it look easy, but they weren't able to even try the balloon dilation because the scar tissue was too close to the valve. We weren't going to mess with the valve...that's a whole 'nother world of trouble.

Needless to say, here we are...waiting for May 15.

How do I feel about it?

I feel like there is a giant ugly countdown clock glaring at me as it invades my home and assaults my entire family. It's like a burglar; it breaks into our house and steals what is most precious to us right now - time. It's always there, hovering above me and haunting my dreams, everywhere I go and anywhere I try to escape. It's a cruel clock full of the worst things I could ever imagine and the closer we get to surgery, the harder it is for me to avoid eye contact with it.

Because the thing is...the thing is once I look it in the eye, in it's the ticking eye, I have to face all of the fears I have been trying to tuck deep inside of my heart. The fears I know I become intimately re-acquainted with during the surgery. If I face them now that will be one more day, one more hour, one more minute, I am not enjoying the time I have now with my WonderBabe. I don't want to make any more memories of worry...I want memories of my baby.

This sucks.

I know it is a relatively "simple" surgery. I know this could all be a million times worse. I know the prognosis is excellent. I know how lucky we are.

But it still sucks.

I just can't believe we are going back to that place again. I can't believe we are going to have to hand over Gabe again. I can't believ we will wonder if that will be the last time we will see him smile or hear his laugh, again.

And even if everything goes exactly right, like it did before, we will still have a ten month old recovering from surgery...for six weeks we won't be able to pick him up under the arms. How are we even going to be able to do that?

Today I feel less like WonderWoman and more like the Incredible Shrinking Woman.

F'ing clock.

The End of an Era

2007-04-03T10:54:00.000-07:00

This weekend was a milestone. For me.

On Saturday night I found myself without a husband and with only one kiddo, Gabers. It was the perfect time for my dear friend K to come over for a girlie night of goodies and gossip, and so she did. We indulged ourselves as only the mothers of young children can, with standards so low they make the nightclub crowd cringe, and began our evening with gusto. Unexpectedly, K surprised me with a gift. An awesome gift. The gift of strength.

To. Put. The. Baby. To. Sleep. In. His. Crib.

It was a long, long, ugly night. Firstly because K made me watch Snakes on a Plane (how could she!), and second because Gabers spent no less than three hours intermittently screaming bloody murder and, I am convinced, trying to get me arrested for child abuse.

I cringed and I whined. I fretted and worried, but K kept me strong...and most importantly, kept me away from the baby."His leg is stuck in the crib slats, I just know it." I would tell her with a bit of a screech to my voice. "No it's not. He is fine." she would say as she turned up the volume so I wouldn't miss the python that just squeezed a misplaced first class passenger to death. "He's hungry, I just know it." I whispered. "No he's not. Leave him alone. Lookit! Samuel L. Jackson is 'bout to shoot out the side of the plane!" she replied.

Eventually I won and traipsed upstairs with a bottle in hand, picked up the baby who couldn't possible scream any more, and filled his tummy with formulaic goodness. Afterwards I eased our way out of the rocking chair, and took him back to his crib. I explained to his wee little self that he was now nicely fed, warm, and clean (or as clean as a baby can be); no more excuses -back to bed with thee! He whined a bit, let out a rather sad mewing noise, then for the first time in his entire life, he deliberately snuggled up to me. He laid his head under my chin, just as though he was sleeping on me, and snuggled in for the long haul as if to say "But mommy, I looooove you."

Cute, but no cannoli. That was when I knew he was playing me.

I put him down and haven't turned back since. It has been three nights since a baby was in my bed...well excepting one "incident" (it turns out hubby is a total wuss). But I'm busy pretending that it never happened, so...

It has been three nights since a baby was in my bed.

K, I love you.

Dr. G, how do ya like me now?

I don't see the glass as half empty or half full

2007-03-29T22:27:00.000-07:00

But I sure wonder what the hell happened to the rest of it...and then I'm not sure if I really want to drink from such a suspect glass anyway.

You Are a Realist

You don't see the glass as half empty or half full. You see what's exactly in the glass.
You never try to make a bad situation seem better than it is...
But you also never sabotage any good things you have going on.
You are brutally honest in your assessments of situations - and this always seems to help you cope.

Are You An Optimist or Pessimist?

Little Voice

2007-03-27T11:26:00.000-07:00

Gabers, circa six months old, babbling away and squealing with delight.

The high pitched childish voice isn't his...it's mine. And no, I'm not wailing like a banshee and then shaking the baby. I'm tickling him. He likes it, honest.

This is what Gabe sounds like. This is also what a paralyzed vocal chord sounds like...an injury sustained during the ASO, and certainly, well worth it.

He is a bit of a squeaker though.

I find it endearing.

In Utero Surgery

2007-03-26T00:09:00.000-07:00

Amazing.

Just amazing.

A Tall Drink of Crystal Light

2007-03-24T18:47:00.000-07:00

17.21 lbs., 29 inches long
=

10th percentile for weight
+
80th percentile for length
+
3 lbs in 3 months
__________________

One very happy cardiologist and an even happier, if still neurotic, mommy.

Long and lean (or is it lanky), just like his sister (who never saw a typical growth chart she liked anyway).

They do not take after me. I'm more of the teapot variety.

Lucky ducks.

Snot, Stethoscopes, and Slumber

2007-03-24T12:37:00.000-07:00

Well, Gabe is sick...again. He seems to have an uncanny ability to catch every single bug in a mile radius and to snuggle it tight for what seems like forever. There is no end to our frustration when the tell tale little hack begins. It was not like this when Miss Emma was an infant. She never got sick. To this day, and I believe in spite of the team of specialists who follow her extra chromosome, she has only had but a handful of colds and maybe 2 fevers...not even an ear infection. She is three years old and has spent more than half that time enrolled in first a toddler program, and then preschool, so this is quite the feat.

Preschool, preschool, preschool. It's a love hate relationship. How I love the socialization and education she gets there. How I love that they are willing to let her paint all over their stuff. How I love the gusto they embrace potty training with. How I love her little friends.

How I hate that her little friends sneeze all over her. How I hate that she is probably licking their cootie infested hands and sucking on their shoes. I don't know what goes on there, but she is acting as a transport device and delivering all these nasty little bugs right into the open arms of her wee baby brother. Yippee.

Just a few nights ago as we sat down to dinner, I glanced over at Miss Emma and was dismayed to see a fresh round of sleepy eye beginning to peer around her long lashes. Not a good sign. Just then I heard the sound of a tiny sneeze coming from the babe, and when I turned to inspect him (which I didn't really want to do...not at all) sure enough I was greeted with the sight of fresh snot rolling down his face.

I couldn't be happier. Really.

Fast forward a few days and Emma seems to have a bit of a cold, but nothing to get my panties in a bunch over. Gabe, on the other hand, has started a rather disturbing breathing pattern and completely bunched my drawers up. Thankfully, he is rather unperturbed by it all and goes on with his baby play. He doesn't even notice his mother frantically setting up the humidifier and steaming up the bathroom. He does, however, notice the booger sucker and the saline that accompanies it. Poor, poor peanut.

Great, now he can't breathe because he is screaming hysterically.

We bumble through that and resume our happy ways while I try to gauge how serious the situation is. Gabe is busy chewing on anything in sight and refusing his bottle, again. But he is happy, alert, and engaged. What does all this mean?

Go forward basis...a few hours later it is way past any excuse for a bedtime. Just as we lay down for the pitiful few hours of shut-eye I can hope to steal before my workday alarm starts blaring, Gabe starts to sound his own alarm. After I spend an eternity trying to hydrate him, decongest him, and calm him down I discover that he is simply starving...poor thing can't drink at all. He gobbles down a bunch of baby food and eventually falls asleep in between Khaled and myself, as comfy as can be, just hours before daybreak.

We however, are not comfortable. Not at all. Nor have we been for months. Not since Gabe forsake first his crib, then his bassinet, and finally commandeered our bed.

We are co-sleeping, but it isn't a lifestyle choice for us. It is out of self-defense. There is only so much screaming a person can listen too. Call me cowardly if you will, but in the back of my head there is always a little voice asking if screaming it out is really the best method for a child about to undergo a second heart surgery. Tell me I am making a mistake if you must and that there is a point in which babies eventually cry themselves to sleep, and I'll tell you you haven't met Gabe yet. And I thought children with heart conditions were supposed to tire easily. Whatever. Thus, on our good nights, there are three bodies fighting for space in our bed; the two on either side holding desperately onto the one in the middle, trying to find precious slumber amongst limbs that have long ago sacrificed their own circulation. For me, it is even more fun because it turns out that Gabe is just like his daddy. Have you met Sir Snores Alot and his mini-me, Baby Snores Alot?

Try not to be jealous. Truly.

Now that I've painted the picture of the winter of my discontent, let me continue with the good times...

By now I was pretty worried. Luckily I am an avid worrier and had already set up an appointment with Gabe's cardiologist, Dr. G., because I had noticed that Gabe would breathe a bit heavier (pant if you will) occasionally, and was prone to sweating in his sleep. Both Dr. G. and I agreed this was probably nothing to be concerned about, but it would be for the best if he saw Gabe for a little checkup...best for me so I would know we weren't waiting too long for surgery, and best for Dr. G. so I would stop calling him.

Off we went to see Dr. G.

Dr. G. is young, attractive, attentive, sensitive, and in general what I would call a God's gift to mothers. He has seen me blubber endlessly and not only adapts well to it, doesn't even seem to hold it against me. I once sent him a seven page fax itemizing my confusion concerning Gabe's heart condition and treatment and requested that he call me STAT. Not only did he call me (brave, brave man) the very next day, he spent the better part of an hour going through every single bullet point I sent him and all of their subset outlines. He did all of this without making me feel like a complete ignoramus considering my complete lack of basic anatomy comprehension, or like I was eating up his coveted time (which I most certainly was). That is service.

I love Dr. G.

Did I mention how cute he is? Such a bonus...this cardiology thing is life long, ya' know. But, as my husband keeps pointing out, he is much more than eye candy. He's quality people.

Back to the visit.

After the nurse (as usual) nearly gives me a coronary while she takes his vitals and records his temperature at 104 via one of those ear torture devices (to which I doth protest and minutes later we had it at 102; at 98 she gave up), proceeds to listen to his breathing and ask me if he has a pulmonologist yet, Dr. G arrives on the scene. He has me calm in a nano-second. I'm pretty sure there is a lesson to be learned here.

Dr. G reiterates that Gabe's penchant for chest colds is not due to his heart, but rather thanks to his big sister and all of her cootyful friends. He reminds me (and I say reminds me because I seem to need to hear this over and over again), that Gabe is not medically fragile. He listens to his heart and pulses and they are the same as before. His blood pressure is fine, for Gabe at least. He is not in danger of going into heart failure and is doing very well. It is fine to wait until May for the patch surgery.

Then, because Dr. G is wise beyond his years, he offered to give Gabe a chest x-ray so we could make sure the cold hadn't gotten into his lungs, turned into pneumonia, or anything else nasty. Amazingly enough, even with the numerous chest colds he has gotten, they never have turned into anything more; even with the notorious retracted breathing that has earned him an evening in the ER while they made extra sure nothing serious was going on, nothing has ever come of it. Even when our pediatrician scares the bejesus out of me and hooks him up to an oximeter, Gabe has always been no worse for the wear and smiled through his disturbing cough...one reminiscent of an geriatric patient with emphysema. Smiled through with an 100% o2 level. Amazing.

Indeed, like his sister, he is most definitely a WonderBabe.

Of course I jumped on the x-ray opportunity. What would take an entire afternoon at our pediatrician's office, complete with instructions to race to the hospital if whatever steroid was prescribed didn't clear up the mysterious rib retractions in the next five seconds, would take mere minutes at our Dr. G's office. And I wouldn't cry. Not one tear.

A man of action for sure, Dr. G was back with the results in five minutes.

"The chest x-ray is perfect. His lungs are fine and we could see his heart on the x-ray as well. It's not enlarged, it looks great. It's just a bug."

Then I went out on a limb and rather sheepishly told Dr. G about our forced co-sleeping situation so I could ask if it was dangerous to let Gabe cry it out. Dr. G. looked at me with such sympathy in his eyes and a laugh was at the edge of his voice when he said "No. You aren't letting him cry?"

"No...we do let him cry, it's just that he wouldn't stop when we tried to transfer him to a crib, and then after awhile he wouldn't stop in the bassinet, and now the only way he will sleep at night is with us. He doesn't tire out...he doesn't eventually cry himself to sleep. Why won't he stop? "

To which I received quite the schooling...not really unexpected though.

"Because you are giving him everything he wants. Would you stop? I know he is sick now, so maybe now isn't the best time, but come June, you have to start disciplining him...just like you did with Emma. You are going to create a monster if you don't. It won't hurt him to cry."

Poor us.

We are going to have to suck it up and deal with this after his surgery. No more passively allowing the baby to dictate our lives. The world will have to stop revolving around Gabers. It will not be pretty.

It's going to suck.

I am relieved though to have the "medical professionals" validate the tough love approach...an approach that I have thought was necessary in certain situations, but this time I have used Gabe's heart condition as an excuse to avoid. I have known all along that we would be sorry for catering so much to Gabe's wants and confusing them with his needs, but I've just been so tired. We're so tired. The assurance that his screaming fits are merely temper tantrums and not evidence of his heart imploding due to extenuating pressure caused by a cruel hearted family might, just might, give us the confidence needed to deconstruct our emerging spoilard. We'll see.

If you could have only seen like the look on Dr. G's face when I told him we were co-sleeping, not as a lifestyle choice, but out of self-defense...

Now that, that was funny. Even at my own expense, funny is funny.

So...all in all, a fabulous appointment. Calming, full of good news, some validation, a bit of schooling, and most of all, comforting.

Now if Sir Snots Alot could just learn to blow his nose...

I know, I know...always the bridesmaid, never the bride. And yes, yes, I would like some cheese with my whine, thank you very much.

What a Lovely Debut...

2007-03-23T11:55:00.000-07:00

Thank you blogland for such a warm and gratifying welcome. Yep...it feels pretty comfortable here. I think we'll pitch our tent and stay awhile; always eager for our 'peeps to pop by.

Stay tuned for bittersweet memories and future fears, sappy sentimentality and never-ending neuroses, all done my style. But don't worry, there will be lots of crazy cuteness and wacky adventures, loud belly laughs and sloppy kisses...all done Gabe the Babe style!

His style is infinitely better than mine.

I wouldn't have it any other way.

All for you, Baby!

2007-03-20T07:51:00.000-07:00

Oh my god, I love this kid.

Welcome to the World, little Blog O' Mine...

2007-03-20T06:02:00.000-07:00

It's time to put on your fanciest suit and your best shoes, wee baby blog, today I unleash you upon the blogosphere. Try, try to behave. I won't always be able to watch you.
No running with scissors.

Now, today you may ask, from where do little blogs come?Why am I here?

I'm not afraid, wee one. I'll answer you as best as I can.

You came from the tips of my fingers and with each word I write, you will grow. Again, be good to me and I will be so to you.

You are here for numerous reasons:

The first one is the most practical - that I need a place to contain my emerging empire of congenitial heart defect research and resources. I simply cannot continue to overwhelm my bookmark folder any longer. It is starting to resent me and seeks it's revenge by hiding the one link I am looking for amist it's brethren.

The second is that I long to create a resource myself for other heart parents who have just begun to make their story, much as we did only eight months ago. It is important to me to find others with a heart story and to become part of a larger community.

Thirdly, I simply love the idea of creating an evolving record of Gabe's infancy...one that breathes with him. I cannot be trusted with a conventional baby book, unless it has leeway for milestone dates Otherwise they tend to look like this: "Baby first Walked on: sometime before 2007.

Interestingly enough, these are all the same reasons Lovely and Amazing Lovely and Amazing has been the story of our life with Gabe's older sister, Miss Emma Jayne, who was diagnosed with Down syndrome when she was but a few hours old. I found out through the evolution of Lovely and Amazing just how integral is to my emotional, psychic, and spiritual health to be able to express myself. The joy, the worry, the sorrow, and again the joy. It turns out I need to express all of that to get to celebration. And celebration was where I was for a long time.

This brings me to the next reason you were born, o' little blog. I was thrilled to discover that more than a few others had derived some sort of inspiration from Lovely and Amazing, or more specifically, from the WonderBabe herself, Emma. It is only fitting...after all, I feel the same inspiration from knowing her too. The thing is...well the thing is that lately I haven't felt so inspired. Nope, not really at all. I have felt frightened, victimized, and angry. Very angry.

Gabriel has an impending heart surgery in May. He is one of the (alleged) 10-20% of post arterial switch patients who develop scar tissue as a direct result of the life-saving surgery. It is a much, much, smaller percentage though that need surgical intervention only eight months later. And this, my little friend, this is why I need you to be here the most right now.

I need a place I can unleash my fear and scream with rage. A place I can review the guilt I feel for feeling anything other than thankful (which I do...eternally and infinitely) that modern medicine was able to fix Gabe's heart and give him such a positive prognosis. A place where I can explore my sorrow when I see one of Gabe's peers suffering. A place where I can just be furious that such a thing as a broken heart even exists.

I need to come to terms with my new life, and with what could be Gabe's. Lovely and Amazing isn't the right place to find myself, at least not all the time. Lovely and Amazing has other work to do. It certainly has known my rage, but not like this. I had already bypassed acceptance and arrived at celebration when I began Lovely and Amazing. I was not grappling with Emma's diagnosis like I am with Gabe's; not any longer. It's different this time 'round anyway. Accepting Down syndrome meant accepting an unforeseen future - one which I have very little control of. My acceptance in no way meant that I had to learn to have faith in surgeons and in stitches. To this day she hasn't even had an ear infection, but she will watch her little brother undergo his second bypass surgery before he is one year old. We will watch.

It's a simple patch procedure this time. In and out. Nothing compared to the Arterial Switch. But he will have his chest opened, again. He will be on bypass, again. He will have a serious recovery period, again. I will be a complete freak, again.

I know, I know...can I get any freakier? Oh yes, yes little blog. This is nothing compared to when I really get my crazy on. Then you'll wish I was still just "talking" to a blog in the second person.

And no, the irony that our daughter whose extra chromosome is associated with heart defects, doesn't have one, and that our son, who only has 46 chromosomes, does have a few heart defects, isn't lost on us. Nope, not one bit. Note to universe: if you stop sending us crisis births, I'll stop making blogs.

So, baby blog, that, that in a nutshell is why you are here. I promise to love you as you love me. I hope that no matter how I use you, that the overwhelming love, amazement, and wonder I hold for my baby boy always shines through. That's the only reason I am so fearful... because he means so much.

So...Welcome to the world, baby blog! It's your birfday!