Feelin' It

He is pure sunshine.

It's been a long while between posts. And a very long while since a really honest-to-goodness- this-is-how-it-is post. Today, I think I'm finally ready to record some truth.

The truth is that the last several weeks have been lived in a bit of a haze. Huge personal victories have been recorded. I finished the Boston Marathon. I accepted a dream position at work. I have wonderful kids who are accomplishing really extraordinary things. And all the while I have been living this blessed life from a distance. Sure, I laughed when things were funny. I shared honest thoughts and points of view when asked. But it's as if I've been hovering just above myself these past few weeks. Observing. Recording. But not really living the moment.

I didn't realize the depth of the cocoon I'd built for myself until I attended an exceptional luncheon yesterday. Put together by an amazing non-profit, Intermountain Healing Hearts, the gathering was focused on honoring "heart moms."

A few of the Heart Moms of IHH celebrating our kids and sharing our lives.

It should be noted here that I was reluctant to join a group with a label such as this immediately after McKay was born. Me? Be part of them? Surely my baby was different. Surely we would not be regulars at the hospital the way these mothers were. Knowing all the nurses. Giving directions to other families who were clearly lost in the hallways. Nope. The thought of it seemed absurd.

But then it got pretty lonely pretty quickly. It wasn't that I didn't have amazing friends and family. It's just that I didn't have anyone who just knew. Who just knew how crappy it felt to have to force meds into tiny, pursed lips. Who had lived through weeks of sleepless nights worried about oxygen tubes and feeding tubes wrapping their way around little limbs and necks. Who took a deep breath every morning while still lying in bed trying to muster the courage to see if your baby made it through the night. Who knew the isolation of closing off the world every November knowing you could not emerge as a complete family again until the next spring. You know, people who just know.

So just a few months after McKay's Glenn operation, I reached out and felt comforted by the sisterhood of IHH.

It was at this amazing luncheon yesterday, listening to the speakers, taking in the music, that I realized I have been numb for a while now. I have chalked up my lack of blogging, lack of keeping a careful record of the past few months, to time. I was busy. But as I began to feel my guard lowered in the conversation and hugs of yesterday afternoon I realized that we all have the same 24 hours we've always had. I was choosing not to feel things in my life. I was not strong, I was absent.

McKay will have a heart cath tomorrow morning. He's been slipping. He's blue. Some days, really blue. Sometimes we have to get him into the shower and warm him up with hot water and aggressive massage. He's not fine. Sure he's tough. And he's happy. But he's not fine.

He wants to run and chase and be with his brothers. It's a scene that makes you smile so hard as a mother you think your heart will burst. And it lasts all of about 10 minutes. Then McKay drops to his knees. Struggles to keep playing. Then he gives you that look--I'm tired, mom. And the magic evaporates.

Instead of realizing the situation for what it is, instead of feeling my way through all of the emotions, I've tried to control it. "How's McKay?" "He's fine." I've even confessed to Matt that sometimes I feel like I need to distance myself from our little Macaroon. Maybe if I tried, I could stop loving him so much. I could give him just enough love to thrive, but not enough to hurt me so much on the bad days. That's an ugly confession. But it's real. Your mind tries to save your heart in strange ways when things aren't perfect. Fortunately, it's impossible not to love your children irrationally and uncontrollably; especially when they need you most.

So I sobbed yesterday. In public. Among other mothers who didn't ask why. And then I got angry. I was angry with myself for allowing my heart to withdraw to safe places where no real living goes on at all. Life is here. I have one shot at getting it right. And I want to feel every inch of all it has to offer.

So tomorrow is going to be hard. I know that. They have asked to keep McKay overnight this time. That's new. They've never planned to have him stay. Maybe it's that he's more unstable now? Maybe it's that they expect to find a lot wrong? And maybe it's just that he's so stinkin' cute they want to bask in his smile a while longer. Yep, that's probably it. The doctors try to shelter you sometimes from their own concerns--funny, because it only makes you worry more.

So we'll make it through starving McKay through the night and until 11 tomorrow morning. And we'll ask a hundred questions and remember one or two answers. That's just how these things go.

I'll probably eat too much and run at irrational times of the day this week. I'll likely snap at Matt and pack the diaper bag full of things I know we won't need. That's just how these things go.

But mostly, I will try to be in the moment, not merely observing it. I will try to be with my child, not just standing next to him. Because if I choose to shut it off, to protect myself, McKay might as well be with anyone else in the world at that point. And we all know little boys need their mommas. Tomorrow I will be his.

Reader's corner. McKay loves books. And I love that!

Please say a little prayer for our big guy. He will be brave. The doctors will be expert. And all will be well. But just the same, we'd love to have your strength in his corner.

An Abandoned Farewell

I wrote this a week or so ago and must have purged it from my system then because I only now just realized it never made it to the blog. We will catch up on Easter and babbling and procedures coming soon, but for now we say good bye to a dear friend and frustrating enemy:

End of an Era

Dear Synagis,

We had our last visit with your painful magic yesterday (now a week ago). It was bittersweet.


The doctor says he’s certain the insurance company will not approve another season for us under your protection. They tried to keep us away this year. But we fought. We were approved. And the RSV came. I’m convinced you save Mac’s life.

No, there will be no more. They say by the age of two McKay will be strong enough, big enough, to fight RSV all on his own. It’s a gamble they play between the cost of the shot, the odds of him getting sick, and the time it would take him to heal in the hospital if it got to that point. Let the cheapest outcome win.

So here we go. Growing up bit by bit. Becoming more confident in our judgment. More confident in our little man’s ability to hold his own. More aware that the rationing, the committees of people who qualify and disqualify patients for care, and the casualties of those decisions are real. They exist. They’ve always existed. Knowing that the people who deal in fear mongering, half truth, and rumor do so to distract our eyes from how broken and inequitable the system they’ve created has become. We feel so blessed to be surrounded by advocates who know how to navigate your twisted paths. Who slay the dragons that block our way and lead us back to safe havens.

So good bye Synagis. You’ve been a $30,000+ comfort. Overpriced and worth every penny. We’ve hated you. We’ve loved you. We’ve needed you. We will miss you.

Cross It Off the List

Our knees were knockin'.
Our fingers were crossed.
And today we got two thumbs up on a perfectly good pair of ears.
Check.

It seems that allowing sufficient time to pass post-tube surgery and RSV fiasco, in addition to putting McKay through two courses of ear drops, was just the thing our little man needed to jump start his ears.

His ENT signed off on normal-range of hearing today and asked to see us in one year. Ahhh. One FULL year.

That's not to say we don't have our work cut out for us catching Mac up on the language delays he likely suffered from nearly five months of constant ear infections and fluid on his inner ear, but that seems sooooo much better than the alternative. I'm a truly lousy sign teacher.

So if I speak in a slowed, slightly louder than required tone and repeat myself several times when handing you an everyday object (i.e., a DRINK, you want a DRINK, yes, a DRINK), just smile and know that I must love you as audibly as I love my stop-worrying-because-my-ears-are-just-fine-mom Mr. McKay.

And Away We Go...

We knew this day was coming. We've known for a while. We've even chatted about it--casually. "Oh, yes," we'd say. "McKay's cardiologist is looking into the best surgeon for his Fontan. We'll likely be headed out of town for at least part of the summer." We said it like no big deal, could- you-please-get-some-milk-at-the-store kind of talk. Today, what we'd been treating as a far-off likelihood became a bit more real.

When we sat down in the exam room at the cardiology clinic today we reviewed our list of questions with each other. Yes, make sure and ask about that. Please don't let me forget to mention this. Then our petite and powerful cardio angel came in the room and started with the what's what. We shut our mouths and opened our ears.

McKay's echo from January looks fine. Heart function is good. Valves look great. But there were some concerns with his bubble test. Bubble test? Did I know he had one of those? Do I know what that is? Apparently while McKay was sedated for the echo, they injected a vein in his arm with a saline solution that they then watched circulate all the way back to his heart and lungs.

The saline tends to carry tiny bubbles, hence the test's deceptively innocent name. In a good bubble test all of the bubbles end up back in the lungs because that is what the Glenn procedure (McKay's second surgery) is designed to do--return all of the blood from the body directly into the lungs to be reoxygenated. However, in McKay's case a good portion of the bubbles also landed in McKay's heart. Not good.

Not so good because it means that "blue blood" or blood that is oxygen poor and has not yet been reoxygenated is mixing heavily with "red blood" or blood that is oxygen rich because it has just been reoxygenated in the lungs and is now in the heart ready to be pumped out to the body. This mixing creates a diluted blood--blood that is not carrying all the oxygen it should--and that is what is being carried out to McKay's body.

In a sense he's like a car trying to run on watered-down gasoline. It'll run, but it will also hiccup and not perform to its full potential. The likely culprit in this unwanted mix up is another pesky collateral vein--just like the one he underwent a heart catheter to coil off last summer. The cardiologist suspects that this time the vein has formed at or near where his superior vena cava and pulmonary artery were grafted together during the Glenn. Again, the body instinctively knows that blue blood, in a normal anatomy, should go to the heart first, then to the lungs and then back to the heart to be redistributed to the body. But the surgeries McKay has undergone are all in an effort to avoid blue blood returning to the heart at all because McKay's half a heart does not have the anatomy to separate the used blood from the refueled. Oy.

So we're headed to the cath lab again. The docs will expertly navigate instruments too small to imagine, into places too scary to think about, to resolve problems I can barely wrap my brain around. They will do it. And they will do it well. That's the first item of business.

Secondly, we were presented with several names and hospitals that our cardiologist considers candidates for Mac's Fontan. The consensus is that McKay will benefit most from an extra-cardiac fontan rather than the lateral tunnel option. This means that they will graft a conduit from the inferior vena cava to his pulmonary artery around his heart, not through it.

Our best, most experienced option for this procedure is a Dr. Spray at the Children's Hospital of Philadelphia (CHOP). Soon the images from McKay's latest echo and the results of the cath he'll undergo in the next few weeks will be zipped across country to this man who will then evaluate the info and schedule our sweet babe for his first cross-country jaunt. He may decide to have Mac fly out for a pre-Fontan cath at CHOP or he may decide the info gathered at Primary's is enough to go on to prepare for the operation. We'll have to wait and see. One trip or two, we'll do whatever it takes to get McKay into the best hands available.

Finally, it was confirmed today that Mr. Mac did indeed receive a generous dose of gentamicin almost continuously during his first 48 hours on the planet. This may be the cause of his hearing woes. We learned today that gentamicin is a vestibulotoxin, and can cause permanent damage to the inner ear if taken at high doses or for prolonged periods of time. But there are also well documented cases in which gentamicin completely destroyed the vestibular apparatus of the ear after three to five days. Mac was exposed for a shorter period of time, so he's in a bit of a gray area. Count on our guy to find the most remote odds and capitalize. Someday that one-in-a-million spirit will serve him well. Right now? Not so much. We're still holding out hope that his next hearing evaluation, scheduled for the 23rd of this month, will bear some good news. At this point, I'm just hoping to get him help and soon so he can begin to tell me what he needs.

On a lighter note, Mac is a complete ray of sunshine. He's begun to do his version of the actions to "Itsy Bitsy Spider" and "Patty Cake." Do you think I can count that as having taught him two of the three signs I was asked to teach him this month? Because he seems slightly less than not at all interested in learning the signs for milk, mom, and more. He's a stubborn one.

Most of all he loves having his brothers dance and run and act like banshees around him. In fact he gets so excited he shakes. It makes me laugh out loud--really. It also makes me realize how full of life he is. And it's a life we're more than happy to help him keep fighting to live. Many thanks and much love for your endless care and concern. Your love and support help us so much on the many days that have seemed more overcast than sunny for us lately. We know better weather is on the way and after we make our way through a few well-forecast storms, life will seem all the more warm and wonderful. xoxo.

Birthday Bliss

January and February are rampant with birthdays in our clan. After just finding enough places to shove the toys from Christmas, I always grin and bear it when more plastic is unwrapped in the months following. Such is life in three-boy suburban bliss.

Tyler and Preston's birthdays were especially fun this year.

Ty chose to have a mad scientist party-- complete with a working volcano cake created by the ever-talented Aunt Hilary (more about her later).

The scientist was funny and smart and knew just the right things to get a room full of
seven-year olds giggling.

And it's hard to beat melting a mannequin head with acetone as a party game for boys.

Preston's party was all about pirates. We loaded up 15 kiddos and hauled them all down to the Discovery Gateway Children's Museum to run amuck.


It went surprisingly well. But I guess when you not only give permission, but encourage five year olds to swing swords and shout like a pirate, things usually go your way.



And of course, there was another fabulous Aunt Hilary creation to devour.



Birthdays really are the BEST.



**More on Aunt Hilary and her yummy, yummy cakes (they actually taste as amazing as they look--made from scratch with the best of everything you always talk yourself out of buying): She just opened up a baked creation business called ICED~so you can get fabulous cakes now too! Contact her through Facebook or via email: iheartcupcakeSLC@gmail.com and let the party begin!**

Velour

McKay has a velour leisure suit.

I guess all of his clothes are leisure suits. Because most everything he does is, you know, leisure.

It's blue. And soft. And fabulous. Just like McKay.

My grandfather wears velour. And I love it.

Why is it that velour is so perfect for men until a certain age and then after a certain age, but not so much in between?

Just another of life's little mysteries I guess.

The Latest

I've tried to begin this post at least a dozen times in my head. But things are messy in there these days, crowded. Good crowded--like when you have all the people you love in the same room--good, really good. But crowded.

I feel like we've been to a bajillion doctors appointments since the RSV shock. In reality, it's only been four (that's close to a bajallion, right?). The good news is the Synagis soundly fought off the RSV from Mac's little lungs. The virus hit his nose and ears hard, but created just a few days of a superficial, nasty cough in his chest and poof! it was gone. I guess those painful liquid gold injections of Synagis McKay puts up with and we fight with the insurance over six months out of the year proved their worth.

I couldn't be more grateful for us or more incensed for others that this medicine isn't available to every baby. As I watch my friends' and neighbors' tiny babes hospitalized by the dozen and then watch them bring those children home to deal with the asthma and weakened systems that often haunt these kids for years to come, I can feel myself screaming on the inside.

There is something terribly wrong about having the means to prevent the ravages of RSV for every single little one out there, but setting up a system where only the sickest of the sick can get it and if even if they can, they must pay anywhere from $2700 (what we paid last season) to up and over $4600 (what we paid for last month's shot) to get it. If you have to turn this political--and maybe that's the problem to begin with, I guess you'd call me a socialist, a bleeding heart, or heaven-forbid a liberal, but it's just wrong, isn't it?

We are fortunate to be covered by a plan that has been more than fair to us and employment that has been consistent, but many are not. Not because they don't want to participate, but because they are shut out. Too sick for insurance. Which means too sick for healthcare. Insurance is NOT healthcare. The system is BROKEN. And it's never anyone's problem until it's your mom, your spouse, your kid or yourself who becomes the poster-child for arbitrary, inhumane decisions in the name of fiscal responsibility. What about social responsibility? Ethical responsibility? Plain decency? I'm done.

RSV scare averted, McKay moved on to more mystery and excitement. At his ENT follow-up, post tube surgery, we discovered McKay's hearing loss may be more profound and more permanent than earlier testing may have indicated. Let me be clear--he can hear something. But when sound drops below a certain level, he seems to hear nothing. That may explain his affection for the loudest, most obnoxious plastic fiascos in the house. It may also explain his perfect contentment with watching a movie on mute. My heart hurts.

Of course, the doctor is trying everything before outfitting our little man with hearing aids. We're on another round of eardrops to make sure there is absolutely no residual swelling from either the tube surgery or the RSV that promptly followed. Apparently that could throw off the tests or impede his ears from responding as they should. But the suspicion and the irony is that the ENT thinks McKay may be the recipient of a rare side effect known to be associated with one of the strong antibiotics he was given following his second surgery. Keep him alive or chance a long shot at hearing loss? Of course, there is no choice.

At the end of the month we'll go back. He'll be tested again. And I'll beg, plead, make-a-deal with God for a different result.

I've had a week to process the prospect of a kid with additional needs. Needs that would require me to learn new skills, enter into a new world of learning about ears and hearing loss and what that means today, tomorrow, long term. I've had a week to think about what he can and can't hear. All the games of patty cake. All the gonna-getcha chases with me clapping my hands at his heels. He squeals and laughs and hears at least well enough to act just as you'd expect. But then there are all the lullabies. All the whispers of, "I love you," and "I know, I know, everything is going to be okay." Did he hear that? I really need him to be able to hear that.

Now, after a week, I realize most of my worries have been just that--worries about me. I have centered on what I need. What I want for him. What I think is fair. Yes, I am selfish.

But I'm ready today, finally, (I think), to focus on what is and prepare for whatever is to be for McKay. Heart, fine. Ears, fine. A lifetime of being a complete hero in my eyes, already done.

There is still much to be determined. We feel optimistic that a few weeks from now we'll be able to chalk up the failed tests to McKay's flare for the dramatic. But until then we'll start to learn and prepare and make the best of what is. I think I need to teach him the sign for Rockstar--because he is definitely that.

Most importantly, I feel assured that whatever he can't hear us say, he will feel. And feeling your way through life is really the best way to navigate after all.