Little Ra

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

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...

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...

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

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

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...

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.