With a Cheerful Heart

Someday You'll Need to Hear This

2011-07-07T00:02:00.003-06:00

It's late. I cannot sleep. I have not blogged in months. But here I am. I can only conclude that the thoughts racing through my head tonight need to be recorded here.

One year ago, I spent tonight packing. Packing for Philly. Packing in silence next to my husband who knew better than to try and tell me everything was going to be fine. Packing to take my son to a surgeon that could help him. Save him.

I am not a terribly sentimental type and typically try to avoid commemorating strange anniversaries like this one. However, I think it has taken me a full 365 days to really understand the impact of our time in Philadelphia and how it changed our lives.

We are all a little emotionally scarred. A little jumpy. A little quiet. A little reverent about last July. Truth be told we'd delete it all if we could. And truth be told we'd do it all over again if we had to. I only partially understand the miracles that were made ours just one year ago. And I am ashamed to admit I have spent the last few months losing sight of those miracles.

McKay is busy. Growing. Hilariously funny and affectionate. He is also still quite silent. We have engaged speech therapy for nearly a year now without success at verbalization. Over the last few months suspicion has grown that more may be going on with our little man. His therapists have shifted from believing that Mac's lack of speech requires treatment of an understandable delay, to a belief that his inability to form any semblance of a purposeful sound is likely a symptom of a potentially larger developmental diagnosis.

Now it's still early. The jury is still out. And we have at least half a dozen appointments and evaluations scheduled with various experts between now and September, so I will avoid speculation. What I know for sure is that all of the talk and referrals and inferences have sent me into a bit of a tale spin. And I've been angry, very angry about the prospect of any more long term challenges for Mac. ENOUGH is ENOUGH is ENOUGH.

I've spent a good two months now feeling angry. And you know what? Being angry is exhausting. It takes a lot of energy and produces crap. Crappy relationships, crappy feelings, crappy progress to nowhere you ever wanted to go anyway.

So I prayed (for the first time in a while) to be done being angry. I prayed for understanding. I prayed to regain a vision of McKay and his purpose and the destination of our little tribe. And you know what? I received an answer. And this, I suppose, is what I need McKay to know someday --

I sat in church on Sunday and listened dutifully to as much of the meeting as I could in between trying to keep my boys entertained and fed and quiet. And then a speaker stood up to share his testimony that does so often --an adult special needs child of an extraordinary couple in our neighborhood. I do not remember a word he shared, but I was overcome with the assurance that he was perfect. He was leading the life that was meant for him. And he was happy. I smiled -- right out loud. I believed I had received an answer. I am supposed to be at peace with whatever McKay's journey will be. Okay, I get it. Thanks God. Sign me up. I'm ready to re-enlist.

Later that afternoon I ran into the man and his mother in the church parking lot. I planned to introduce myself and explain a bit about McKay and the answers I was seeking that day. I planned to thank them for their example. But I was quickly stopped short after sharing my name by the man who grabbed my hand and said very matter of factly, "I shared my testimony for your son today. For your son."

The tears were instant. I sobbed. I tried to explain my emotion to the mother. But the son just grabbed my shoulders and pulled me in for a hug. "For your son, for your son," he said over and over again. And I knew this was more than an answer to my prayer I somehow retrofit to make myself feel better. This was a straight up Answer with a capital A. God is aware of my sons. He is aware of my anger, my hurt, my marriage, my family. He is constantly, caringly, overwhlemingly aware.

So there it is. I need to remember 365 days from now and 365 years after that, that there is purpose and plan in what seems a chaotic mess when I let less than divine feelings take over. There is much work ahead. But I know now that it is necessary work. Work that will take us somewhere intentional, no matter the outcome.

"Always we hope someone else has the answer. Some other place will be better, some other time it will all turn out well. This is it. No one else has the answer. No other place will be better, and it has already turned out. At the center of your being you have the answer; you know who you are and you know what you want." ~ Lao Tzu

And what I want is happy children. A happy home. And children with memories of a sincerely joyful mother. That much is in my control. Praise God for his patience and generosity in moving my feet to a better view.

Peep

2011-05-10T23:15:00.008-06:00

After nine months of speech therapy, we have a peep -- sort of. This will be more of a skimming than a deep dive, but there is progress to report so drum roll please...

Mac continues to refuse, abstain, find irrelevant or pointless any attempt at verbal communication. But miracle of Easter miracles, McKay made the sign for "eat" while handing me a package of marshmallow peeps from his basket on Easter morning. I was so surprised I had to confirm with Matt that he had just seen the same thing I had -- McKay's tiny fist coming to his lips to make the sign for eat while handing me the candy. And while I asked, the stinker did it again. And again. He was becoming increasingly agitated with our lack of response to the request, so in spite of the fact that it was 7:3o in the morning, I ripped open the sweets and handed him the sticky little bird. He smiled, did a little happy dance and then proceeded to carefully lick the prize.

Since that surprise Sunday, signs for "more," "please," "baby," along with his versions of "cereal" and "cracker" have all made their way onto the scene. Some very thoughtful and aggressive "yes" and "no" head nods when we ask "this or that" have also proved helpful.While not quite enough tools to have a conversation, the signs are meeting some basic needs. Not the least of all answering the growing concern that he is indeed capable of imitation and a communicative exchange.

It's time to seek some more complete answers and we've lined up a team of additional specialists to add to McKay's support system. We'll be making our initial visits over the next week and hope to be encouraged by new learning, strategies and resources for our guy. Because although Mother's Day with three little men was just about as sweet as it gets, there is no getting around the heartache of still waiting to hear McKay's voice holler "Mom!" like any proper two year old misfit should. We know he's got it in him, we just need to find the right way to bring it out.

Promises

2011-03-08T23:12:00.007-07:00

It's 10:30pm and I just stepped off the treadmill. I promised myself 4 miles today -- a promise I thought I'd lead off the day with at 5:30 this morning. Today, however, life had other plans. Namely a two year old who screamed inexplicably for most of the early morning hours. Regardless, no one is crying now and all of the day's promises have been kept.

Indeed, wonderful promises have managed to find their way into our lives over the past few months.

My Ty-guy turned 8. EIGHT! We did it up right with a party at the Lion House in Salt Lake with a few of his buddies. They played pioneer games, made their own taffy and wore coonskin hats throughout the entire shin-dig. Heaven.

The actual birth-day soon followed the party weekend and Ty awoke to his first concert ticket to see his favorite band - Bon Jovi. (Lucky for us, no?)

Brothers joined in the gift-wrapped excitement of that evening's family festivities. (It's a rare, fleeting and wonderful thing to see these two get excited for each other :) Ah, brotherly love. Let's hope we can all survive it.)

In our faith, turning eight also means reaching the age of baptism.

More mugshot than portrait, I think every good Mormon kid has a photo like this one so I had to include it in the remains of the day. As with the less than stellar family photo below-- Preston was none to excited to be having ANOTHER day focused on his big bro. Three parties in one month is great for the birthday boy, not so great for the little brother. The baptism ceremony was the straw that broke the camel's "what about me" little back. Luckily, his birthday followed soon after.

Baptism day was celebrated with another perfect cake from Aunt Hilary and Uncle Ron. Seriously great cake--inside and out.

As part of Ty's first real right of passage, he also received his first suit. A gift I was unsure would excite him until we took him for his fitting. The three-way mirror and Dave Matthew Band dressing room tunes was a combination that unleashed an inner fashionista. He was so pleased with the way he looked, the tailor could barely get him to stop shaking his money maker long enough to mark the cuffs. I was smiling so hard my face hurt. Good, good day.

So to the little man who made me a mother, please know that watching you grow up makes my own aging worth it. You make me more proud with every day. Thanks for being our unending chatterbox, idea machine, third parent, and heart of gold.

Now, for Preston. The count down to Preston's birthday usually begins immediately following Christmas. And he is eerily accurate with his numbers right up to the day of celebration.

This year, our six year old magic man enjoyed an afternoon of tricks and surprises all his own.

A real magician, live animals, 15 friends, candy, candy, candy, and a house full of adoring grandparents, aunts and uncles. What more could a kid want?

Well, maybe to lose his first tooth. FINALLY! Although the newness of the moment has him looking a little nervous in the picture below, he was thrilled.

Life continues to be good here. Our kind of good, but good. We are still trying to figure out and understand our silent Mac, but there have been a few breakthroughs --

He now grabs at our hands with authority and leads us to the place or object of desire. HUGE improvement over what seemed like random tantrums. At least now we know the vicinity of his want or need and we've become pretty great guessers.

He has also started to sign a very little bit. The routine goes something like this: After leading me to the refrigerator and forcefully placing my hand on the handle, I say "Open?" and he returns the question with a look of "Duh!" and I open the door. He then giggles, shimmies his way into the fridge and starts pumping his little fists open and closed, making the sign for milk. It's really the only thing he drinks these days so we know what he wants when we land outside the refrigerator door, but progress is progress. And I'm taking out my chalk and marking this little sign as point one for the good guys.

Many of our heart friends are gearing up for Fontans in the coming months. Much love to all of you sweet babes and the brave moms and dads who will see them through. I sometimes marvel at the fact that the Fontan hurdle is behind us now.

We received a surprising 7:00am phone call from CHOP earlier this week, the hospital where McKay had his Fontan last July. Nothing good is on the line when the phone rings that early. Someone is hurt or the carpool is about to fall apart. My intuition was right -- It was a researcher hell bent on convincing us to come back to CHOP for an all-expense paid poke, prod and MRI visit. They are studying blood flow in the brain of single ventricle kids pre- and post- Fontan. While we signed up for three research opportunities during our stay, we considered but decided against this particular study for the extra sedation, needles and radiology required to participate. Weave your needs into a regularly-scheduled procedure, sure. But require a separate event to participate? No thanks.

I'm not sure if that makes us bad citizens of the heart community, but it took us all of about 15 minutes to reconsider the request and thoughtfully decline, again. We're just not ready to go back to Philly just yet. Instead, we need to be home. Home to have a normal summer of sprinklers and popsicles and mastering two wheels. It's coming, I can feel it. It's snow today, but it will be sunshine tomorrow. Baseball tryouts are Saturday; bring on the boys of summer.

Orange

2011-01-31T21:35:00.006-07:00

These two may not say much, but they know how to enjoy a Friday night.
(Mac and his girl Sarah after some pool-time fun on a recent weekend getaway.)

Tomorrow night's class will be week 5. Week 5 of our commitment to the Hanen speech therapy courses. Week 5 of grandma showing up to run the show for a night while I steal away to sit on a folding chair in a u-shaped configuration of plastic tables from Costco with 15 other parents whose children are in some stage of silence as well. Week 5 of becoming painfully aware of any and all little things we might (or might not) be doing at home to enable Mac's mums-the-word attitude. The truth is that four months into speech therapy and five weeks into Hanen training, Mac still doesn't say a dang-darn thing.

To be honest, the focus of the Hanen program surprised me. I expected to show up and learn techniques for teaching McKay how to be a communicator. But instead, the spotlight was turned big and bright on all of the little things I might not do well - letting him lead me in play, getting on his level when I talk to him, waiting, waiting, waiting for him to answer me. Was I the problem? Oh, please let it be that easy.

As the hours of the first course passed on, I could feel myself losing it. While I pride myself on being decently self-aware that I have not dealt with much of anything that goes along with the grab bag of emotions I've kept securely stowed away for the past two-plus years, this class blindsided me. The dam was about to spring a leak and it was time for me to leave. As class wrapped up, I promptly ended a conversation with one of the leaders and high-tailed it to my car. Crap. This wave of emotion was going to take more than a few deep breaths to scare back into hiding.

I called Matt. I was sobbing and hardly coherent. Of course he doesn't talk, I half yelled through the phone. Why would he? We have effectively ignored him every time he told us, no, or stop, or that hurts, or I don't want to swallow that medicine, for his entire life. At what point does being held down, comforted through lies that everything is going to be okay and then put back through that entire experience again and again, start to shut a little soul down? Forget the speech therapy. This kid will more likely need a slush fund for some serious counseling through the years. What have we done to him?

I cried for a solid hour. Very, very rare. Maybe the first time ever. No. No. No. Not now. Shut it down. Shut it down NOW.

As the classes have progressed, as we've been videotaped interacting with him and, along with others in the class, volunteered to have our homes, children and most tender worries put on the big screen to be tested against the criteria for parents who successfully encourage speech, I remain pretty raw about the whole situation. I continue to struggle through some of the 'why' of McKay's silence. Is it fixable? Will he always face an uphill climb when it comes to language or academics or life in general? Why can't something, anything be easy for this kid?

I know - he's two and a half and I'm being a bit dramatic. But it's where I'm at right now.

I am also to the point where I realize that the only thing I can change is me. The rest is up to Mac and God. And maybe that's what this entire Hanen journey is all about -- reminding me that whatever the issue, I can only figure out the most positive and productive things that I can do to bring opportunity to the situation and continue to do that -- over and over and over again. Whatever the situation, whatever needs changing, your child, your parent, your neighbor, your spouse, we can never change someone else. We can only change ourselves. So that's what I'm working on right now. Changing my patterns. And it's brought some unexpected blessings.

I've realized that I'm not as hungry for words as I thought I was--I'm hungry to connect. McKay and I are bonded, permanently. Forever. And ever. And ever. But it's the day to day connection of knowing what he wants, learning his favorite color, animal or book--that's what I really want.

Little by little, I am getting a bit more of that now. In the past two to three weeks, we've had a lot of eye-to-eye conversations and somehow I think he's understanding more. Just today I came home and laid on the floor next to him and we held our hands up in the air, counted fingers (he pointed and I filled in the blanks), I said 'yea' and 'clap.' And he did. He put his two chubby paws together and clapped. He laughed and I felt happy. Simple, simple, simple moments.

And then I remembered, it's orange. He always chooses orange first whenever we open the crayon box. Orange circles, orange lines. Words or none, I know this kid. And we'll find his voice soon enough.

Waxing Philosophical

2010-12-29T21:47:00.004-07:00

"Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work; you don't give up."

ANNE LAMOTT

I've been thinking a bit about hope lately. The nature of hope. The idea of hope. The why, what, and when of hope. When is it okay to hope? When is it foolish to hold onto it? This may turn into a bit of a ramble - but it's something I need to capture. I invite you to bear with me or don't -- this one is for me.

I'm certain hope is on my mind because 2010 has been a year of hope for our family. Hope for goodness in the unknown. Hope that we made the right decisions. Hope that tomorrow would come and the next day after that and we would all still be here to welcome it -- together.

Of course, we did not rely on hope alone. Hope is no substitute for preparation. You inform yourself, you research, you connect and confirm, and you pray. And when all that can be done is done, when all of the decisions that can be made are made, you invite hope to sit beside you and you take the journey. There is no avoiding the journey.

Hope was the fuel we relied on when we were running on empty. It filled us up and set us straight; hope offered direction and focus. Hope became the energy we took in and passed on to our family, our doctors, our children. It helped us to see beyond now to tomorrow, to better. Hope helped us create a vision we worked to realize. There is no avoiding the work.

Our every hope has not yet been realized. Our family still operates a degree or two east of normal, but we are here. Together. And in that there is hope. Our dreams and wishes and hope continue to invite possibility. Amazing, unexpected possibility.

Hope is light. And no matter how many shadows you must pass through to find the light, you walk because you have hope that it will be found. A wise and dear friend said, "Light and shadow bring depth into our being." I love that. I feel that. I aspire to understand that truth more fully. Indeed, if 2010 was a year to connect with and understand the power of hope, I walk into 2011 full of intention to invite light into every corner of my life. More light. Less shadow. I think that's how it works. And somehow I feel that although I cannot control the timing or depth of the shadows, I can control the light with which I meet them.

Vague - yes. Ethereal - probably. But that's the great thing about personal truths and growth - they are your own to ponder and understand. Your own. Embrace yours.

The Silent Treatment

2010-12-16T23:04:00.002-07:00

Mac and Maui were made for each other.

Hey there friends! Yep, still here. Still happy. Still trying to fit it all into the day. Still falling short when it comes to maintaining our little journal of adventures here. Since Mac has become more mobile, leaving all of his tubes and troubles behind for now, we've been on the move. But today it's not about getting caught up on Halloween, or Thanksgiving, or an impromptu trip to see Mickey or Maui. I hope and plan and have committed to update over Christmas--really. But today, I need your help.

After three months of speech therapy, McKay has nothing to say. He's becoming increasingly frustrated with our communication routine (or lack thereof) and has starting hitting and biting to make his point. Not so fun.

I'm signing. I'm repeating words and short phrases at nauseum. We're watching all the language videos. Reading books. He's going to nursery where he can see and hear other kids speaking and singing. He'll start a special preschool program in January to augment his opportunities for interaction. Grandmas are on board. Aunts are on board. Babysitters are doing the same. The poor kid probably thinks you have to say everything five times to be heard. And yet, nothing.

This week our speech therapist has recommended we commit to a speech development program called The Hanen Program. Have any of you experienced this program? It's an extensive on campus education program about helping children communicate. Please say someone out there knows something about this! I need to know if this is something that will be worth our time. The time commitment is, well, a big commitment. Not so bad if I can take Mac with me after a day at the office and we get to focus on him for a few hours, but this program is just for parents. No Mac. Just mom. I can't love missing an entire night each week with my boys. I can't love that I won't be actually coaching him through the process, but sitting in a classroom discussing whether or not McKay is better or worse off than all of the other kids whose parents will be there too. Is that selfish? Am I being short sighted? Bad attitude? Seriously - tell me.

So here's the plea -have any of you experienced speech delays with your kids? Have any of you after taking a truly hard look at whether it's you that has enabled that delay and changing your ways, still been frustrated by your child's seeming disinterest in language, imitation, sign or anything that has to do with communication? What did you do?

Don't get me wrong. McKay plays, he dances, he follows some directions, he seems to understand most things we tell him, he loves, he kisses, he squeezes and problem solves. But he does not speak. He is 28 months old and has no words. And everyone seems to think that's a bad thing. A really bad thing.

Part of me wants to believe that it's okay. He'll make it up. He'll figure it out. But professionals who study this topic seem to be worried or puzzled or fascinated by it. And that gets me to worrying too.

So that's it tonight. Nothing particularly cheerful aside from the picture of Mr. Mac at his favorite fountain on our latest search for some sun. Just a mom who's been silent for a little too long searching for some answers for her son who seems perfectly content to enjoy the silence. Please, speak up. We're listening.

Dream Big

2010-10-19T22:21:00.008-06:00

If no news is good news, I guess you can assume we’ve been living a whole lotta good news over here.

The last few months have been a breath-holding, too-good-to-be true, waiting-for-the-other-shoe to drop (but-it-didn’t) exercise in trust. Trust that the doctors did exactly what they said they did. Trust that the repairs would hold. Trust that Mac’s body would handle the changes well. Trust that we would be able to tell if anything was going wrong. Exercising that kind of trust can leave you exhausted.

But yesterday, we received confirmation --confirmation that everything is going as well for McKay on the inside as it appears to be going on the outside. The docs directed us to stop all of McKay’s post-surgery meds one week ago. They wanted to evaluate him on his own merits – no assists, no intervention. And our drugless little wonder could not have been better. Aside from a liver that seems slightly enlarged due to a change in pressures from his new plumbing, McKay received a clean bill of health yesterday.

After the exam, x-rays, and tests we did something the doctors have never done with us before-- we conferenced about the coming years, not months. We talked about the importance of social development instead of prescribed isolation. We talked about the possibility of him going years, even decades without another surgery. We even talked about signing him up for the four-year-old soccer league when the time is right. I never let myself plan, dream, or envision anything that far ahead before yesterday. Permission to dream for yourself is empowering, permission to dream for your child is transforming. It's a concept to which I'm still happily adjusting.

We're not completely out of the woods yet. Mac still has a way to go before he’s up to par developmentally. He still has no real, recognizable words. We give him generous credit for nie, nie when he wants to get into bed and I thrill each time I request a kiss and he delivers, but it's a long way from effective communication. A speech therapist now visits us three times a month and we’re working on some simple signs and animal sounds. The progress is slow, but there is progress. Just this week he has started to make a "mmm" sound when he sees a cow, seemingly trying to spit out some semblance of "moo." Progress.

Some have told me to expect a month of developmental delay for every minute they shut McKay’s system down entirely – every minute he was technically “gone.” For McKay that time totaled 29 minutes, 29 months. The child is only 26 months old. So technically, I guess we could say he’s doing better than expected. I really don’t know what to think, I only know how to feel. And I feel grateful.

I am so thankful it overwhelms me, stops me, and causes me to see everything in life in new and glorious ways. Everything. I've been given the chance to dream, to hope, to imagine futures for all of my children. All of them. And you know what they say – if you’re going to dream, dream big. Watch out big, wide world. Mac is here to stay.

Totally Two

2010-08-29T14:20:00.007-06:00

Mr. Magic turned two last Friday.

Before the party, there was a fishy gift or two.

"Ish. Ish." It's the only word Mac says with any regularity. Now he has his own tank; just the thing to encourage his fascination with the deep sea.

His "Ish, Ish" cake was covered in special details.

Chock full of love and personality courtesy
bakers and artists Aunt Hilary and Uncle Ron.

A major monsoon brewing outside brought our picnic plans indoors. Which meant fishing for prizes over the balcony rather than in the pond.

But no matter, there was much to celebrate and everyone made the most of Plan B.

No one more than McKay. Although he's still a bit overwhelmed by crowds and very weary of anyone outside his inner circle coming within 10 feet of him, his spirit seems to be coming back. He's quicker to laugh, more willing to be held, and more inclined to share a smile than he's been in weeks.

Watching our happy boy return back to us and enjoy a celebration meant just for him, was a gift.

Truth be known, just a little more than a month ago we avoided talk about his birthday plans. Who, what, when, where? It seemed too risky to discuss. We were getting through today. Just today.

But two? Turning two meant we had an entire year to look forward to. It was a milestone that made me want to gather everyone in. I've felt very private about it. Quiet. And not at all how I expected to feel.

Starting this new chapter feels amazing and unsure. Up until now there has always been a huge surgery, a milestone to work toward and prepare for. That type of work and worry takes up thought and time. However awful, the milestones so far have been concrete, unavoidable, sure.

Now, post-fontan, at home, ready to try "normal," there is less to count on. McKay is not "fixed", but he is as well as he's ever been. He's not through with surgeries, intervention, procedures, but he's through for now. It's all ad hoc from here on out. And although it might seem strange to feel anxious in the land of better than ever, the truth is there is nothing sure to anchor to here. There is just tomorrow and the next day and the day after that. We have climbed our next mountain of sand and we will do our best to stay on top until the landscape starts changing underneath our feet again.

Our best guess is that we have about 8-10 years; a decade before things get too serious again. At least that's what it seemed with the age groups we saw in Philly. Babies. Toddlers. Pre-teens. That seemed to be the age spread as we wandered up and down the halls of the cardiac floor at CHOP.

The plan is to return to Philly every year. It will be a family trip - the brothers three for a yearly pounce into the city of brotherly love. We will visit for check-ups and check-ins. For studies and research and access to the most renowned set of post-fontan specialists in the world. McKay is now affectionately known to the heart world as a "Single Ventricle Survivor." It's a title we were not aware of until we had actually joined the club. And it's a title we will fight to keep.

As my pediatrician advised this week, "It's time to stop worrying about surviving, and turn our attention to thriving, developing and helping McKay reach his potential." Speech therapy will begin next week. This kid needs a voice. Somehow I think his lack of language to this point has been a tender mercy.

We are more than grateful. To be at home. To be surrounded by family. To be celebrating.

Happy Birthday my totally two!
You have taught us to live deeper, appreciate more and move on more quickly than we could have ever learned in a lifetime without you.

Rush for Summer

2010-08-15T16:45:00.013-06:00

The Monday after we arrived home from our field trip to Philly, Matt said, "Look around. It's summer. We almost missed it."

It was true. Summer had a late start in Salt Lake this year and it was just beginning to warm up when we flew the coop. We sat silent as we drove past roadside vegetable stands, people in flip flops, and camping trailers clumsily making their way onto the road loaded down with a week's worth of fun.

"We're NOT going to miss this summer," Matt declared.

And so our mission to pack summer into a few short weeks began.

Because we've already had three weeks away from work and three weeks of time off is a lot of time away no matter where you've been, we've done our best to make the most of weekends for our summer fun. We caravaned the entire extended family up to Bear Lake and back, spent a late afternoon with friends at the water park, and, this weekend, we took the boys to the Green River.

The river is majestic - in absolutely every sense of the word. It rolls and tumbles and inspires deep breaths.

It's just the place for brothers to make memories with each other,

and a grandpa who will stop anything to spend time with them.
He makes them feel as special as they are.

Mac was more the beach goer than river runner this trip. He played hard. And remembered some good advice about an apple a day...

All tuckered out, McKay clutched this lucky apple for all it was worth; falling asleep in the sun, breeze, and sticky-sweet smell of fruit-drenched fingers.

Summer is a season of play. Of being together and stopping time to enjoy the sunshine. We're soaking it up. And the time together has been healing -- for all of us.

Looking Forward

2010-08-09T21:44:00.007-06:00

Grandma called today. We've apparently gone too long between posts. I apologize. We've been preoccupied; standing in awe of the month that is now behind us. Did I just say that? Yes, the Fontan is behind us. Pinch. Pinch. Pinch. I'm still a bit reluctant to ring the victory bell, but we cannot deny the amazing grace that has attended our family in the last 30 days.

One month.
Just one month to go from this:

To this:

Off oxygen. Recovering. Trying to keep up.
The strength of his will takes my breath away.
I'm about to call act three of this beautiful nightmare complete.

This is Mac's last xray. Almost crystal clear. Almost. Just a tiny amount of fluid remains in each of his oh-so-oxygenated lungs. He's sat-ing between 88-91. And that's at Salt Lake's sky-high 4,400 feet above sea level. I still cannot quite believe it, trust it, or begin to exhale myself.

Of course, the meds continue. McKay receives 3 doses a day of diuretics and 1 aspirin. He's good at the aspirin. He's taken it everyday of his life. He opens up like a little bird and I drop in the chewable tablet as he toddles away. Easy.

The diuretics are a different story. Clenched teeth. Screaming. Tears at the mere sight of the syringes. He's learned to hold the liquid in the back of his throat and gargle it back out. We do our best, but I'm sure he only swallows about two-thirds of his dose. I dread giving it to him. But I dread the thought of going back to the hospital more. So we'll endure three more weeks of it and then put it behind us and try to forget.

Although I'm not sure forgetting is entirely in the cards.

I made the mistake of reading McKay's operating report. I remember only three horrible things from the two page blow-by-blow: Oscillating Saw, Heart-Lung Bypass - 62 minutes, Circulatory Arrest - 21 minutes. And it's those chilling phrases that make it hard for me to say "No" to chocolate covered pretzels before dinner - because they make him smile.

McKay is still very much in recovery mode. He's still napping 3-4 hours each day. He still lays down in the middle of the floor mid-play and calls a time out.
But he gets back up.
On his own.
In his own time.
The way he always has and the way, I suspect, he always will.

Just yesterday he clawed his way up two flights of stairs to his room. Last week he made just two steps before he swooned backward and let me catch his fall. Progress. It is sure and steady and remarkable.

These two crazies are fiercely protective and seem to know just what Mac needs. They have been patient beyond their years, understanding beyond expectations, and just the right medicine for a little brother who idolizes their every move.

We are blessed. Many have apologized to us for having it "so hard." I must respectfully disagree. In the spectrum of health challenges that could be ours, Mac has taken us to the edge a couple of times and then turned his train around pronto and headed directly for a happier track. He makes this journey about as easy as it can be. As for the fact that we must be on this journey at all? My two cents is this: No matter your challenges, life is about as hard as you decide it's going to be. If you choose to wake up everyday, curse the heavens, and declare "woe is me" before rolling out into the world then, yep, life is hard.

And the real tragedy in self-pity is that it is not what God intended. I know He blesses us with exactly the circumstances we need to grow and learn and become more than we deserve. I will teach nothing less to my kids because I know it to be the truth. I've asked and I've been answered. I want you to know that I know that.

Some days joy comes more easily than others. But it's on the hard days, the days when you must choose joy, that it tends to be the stickiest, stay the longest, and taste the sweetest. It's on those days that it surprises you with how simple life really is and how deeply you appreciate what is yours - all of it. We choose joy.

Home

2010-07-27T22:48:00.007-06:00

Home. We made it. And I've been too busy pinching myself to post. I'd apologize, but it's hard to feel bad about anything that's happened in the past 72 hours. It is SO good to be home.

Our freedom flight did not hit the skies until 5:30 Saturday night. That meant we had the entire day to pack it up and pass the time. Together. Outside the 12 x 12 room where we had just spent the last 13 days. Time to do whatever we wanted. I could not stop smiling.

So we drove. We drove 90 minutes to Atlantic City. It was 102 degrees and crazy humid when we arrived. That led to a 10 minute sprint to touch Mac's toes into the ocean for the first time and quickly back to the car. Heat, heart surgery, toddlers; it's a bad cocktail we wanted no part of. Don't worry; he'll get an extended opportunity to put his toes into the sand soon enough.

The flight home was perfect. McKay was an angel. He slept, snacked, laughed, and charmed the cashmere blazer right off the button up-type across the aisle. It's officially impossible to keep your guard up with this kid. Stand back. He'll melt ya'.

Sunday seemed a long day waiting for the brothers to arrive. My sister did not get my message about us being home until their journey home was well underway. She helped keep our arrival a secret from the boys who rolled in speechless. The hugs between us were one thing. I missed them terribly - ached for them, really - and it felt so good to feel their arms around my waist. The reunion between brothers was something to behold. It wasn't wild hugs and laughter. It was quiet, and thoughtful, and a just-let-me-take-a-minute-to-look-at-you moment.

Preston marveled, "No tubes, mom."

Ty patted his head and said, "We need to be careful with him, right?"

Right. However, I cannot guarantee how long McKay will agree to be careful with you, I thought. And after a few moments, it seemed McKay remembered. He stuck out his little Frankenstein arms and began harassing the boys. Grabbing at their necks and shirts and middles from behind. They giggled and gently patted him away.

These brothers are thick and it's a beautiful thing to behold.

Matt and I secretly held our breath until Monday. They called early and asked us to be there within the hour. Here we go, I thought. An xray was about to tell us if the togetherness could continue. Come on buddy.

Everything about McKay said he felt better. He colored in the lobby why we waited for the xray. He seemed happy and well.

I love it when I'm right.

His xray was clear. CLEAR. As in: No fluid. No effusion. Poof! Gone. Magic.

Our cardio angel could not have been more pleased. She told us to cut one of the six doses of meds he's currently receiving and gave us the week off. We'll check back in next Monday to make sure all continues to look amazing.

We celebrated with a long overdue haircut.

Then came home for a dance party with the boys.

Today, our hearts all feel more whole. This week has taught us a few things we already knew: Prayers are answered. Hope is always in order. Everyday miracles surround us.

We also learned that hospitals are not true places of healing. They are places of fixing. Of brilliance. Of absolutely life-saving events. But no one leaves a hospital healed. Especially two year olds who cannot understand why every visitor they receive in this strange place brings pain and fear. And, most of all, why mom and dad allow it to happen again and again. No; while we were feeling grateful, none of us felt healed.

Real healing comes when the spirit is allowed to feel safe and cared for and loved. Home is magic. Family and familiarity and routine. Our smells. Our people. Our space. It was exactly what Mac needed to get over his complication. And we are drop-down, on-our-knees grateful for one of the most pedigreed, trained, and skilled medical teams in the world letting go of all they know about medicine and their power to treat, and remembering that their ultimate goal is to heal. Well done.

His Way, All the Way

2010-07-23T10:47:00.003-06:00

McKay's xrays and labs this morning were...drum roll please...better. Not completely clear, but improved and good enough to talk the docs into letting us do a follow up on Monday in Salt Lake!!

We just booked the flight home and plan to touch down tomorrow night; one day ahead of our boys' return home from a camping trip with my sister. Can you say, "Surprise!"?

Our Mac's recovery and discharge were slightly less than traditional. But then again nothing about this kid is ordinary.

We are elated.
We are beyond grateful to so many, for so much.
And now we are home bound.

Praise be given.

Paroled

2010-07-22T10:05:00.003-06:00

Mac's effusion is unchanged. Through four days of adjusting meds, up-ing doses, back and forth from IV to oral--unchanged.

So unchanged, in fact, that they are talking this morning about discharging us with the promise to stay in the area and having McKay come back for daily outpatient visits through Monday.

At this point the theory is that he may do better outside the hospital than in. Freedom, interest in play and activities, a sunnier attitude. It all goes into the mix of healing and wellness. I think it's a good theory.

It all hit home yesterday when one of the cardiologists said, "I think we're trying to treat an xray instead of a child. Look at him. His sats are good. He's walking, playing, eating, sleeping. He just needs to go to the park and kick this thing."

Post-park and play over the weekend, if all is good Monday--we're home.

This turn of events is both nerve-racking and exciting. I am DYING to love on my other boys. Remember them? Tyler and Preston have been on the party-sleepover-vacation circuit for nearly three weeks now. It's time they had their mom home to make them practice piano and clean up their room :). Hardly. I just want to snuggle, make up stories, play games, see and hear all about the pictures they took on the camera we left them, and read the journal of events Ty's been keeping (just so he doesn't forget to tell us something, he said).

From here we just need McKay to take his meds and show a stable or clearing xray every morning from now until Monday.

I know it's a lot to ask kiddo, but you're clutch. Let's do this.

Sincere Thanks

2010-07-21T10:08:00.006-06:00

Last night my husband returned alone to a quiet, darkened corner of the Ronald McDonald House here in Philadelphia. It's a ritual he practices every night. He waits until McKay falls asleep, kisses me goodnight, and leaves me to sleep on the plastic couch at McKay's bedside. It's a generous act; he gives up his place knowing just one parent is allowed overnight and I would only worry and call an obnoxious number of times to check on McKay if he were to stay.

But last night, he was the one to call.

"There is a package here," he said.

"It's full of goodies, and Thomas the Train toys, and cards."

"Wow," I responded. "Who is it from?"

"There must be a dozen cards here Mindi. This is really amazing."

And yes, it was.

I journey in my work life alongside some of the most exceptional human beings I have ever known. We are not just colleagues, we are community. We are confidants. We care--genuinely, sincerely, and deeply for each other. This gift was more than all of the thoughtful things and words packed inside; it was another evidence of the power and blessing I feel in my life from that very special place, so full of extraordinary people.

Thank you for your prayers O.C. Tanner. For this and so much more, we are beyond words.

Soggy

2010-07-20T12:11:00.002-06:00

Making the decision to have a child is momentous.
It is to decide forever to have your heart go walking around outside your body.
~Elizabeth Stone

___________________

The fluid is back. It's made itself at home in and around the lower part of Mac's right lung. That also means IV meds are back. And sleepy Mac is back. The next 24 hours will be important. If he responds to the meds, we're on our way to healed. If he does not, we're on our way to another chest tube. Cast your vote for healed, okay?

As for his amazing our-Mac-is back day yesterday? The doctors confessed this morning they were very surprised at how well he did yesterday. Short lived, but soon to return I assured them. We just have to give his body time to figure this thing out.

Come on kiddo, we've got a whole world of summer to enjoy. Let's spring this joint.

Tube Drama

2010-07-19T08:39:00.004-06:00

McKay's chest tube fell out last night. More like wiggled itself nearly out and invited a cardiothoraicic surgeon to finish the job. Regardless, it was extremely frightening to his parents.

Matt and I were laying across the hospital bed reading a few bedtime stories to Mac when we both quieted at the sudden sound of suction. We looked at each other and immediately started trying to assess where the sound was coming from. We figured something had gotten loose in the tangle of tubes and wires that criss-cross Mac's body. We got quiet and followed the sound - straight to the bandage on his abdomen covering his chest tube. We called the nurse. She listened. She left to page surgery. The site started leaking fluid. I ran in tears into the hallway and grabbed the first person I could find. Suddenly the room was full of nurses and doctors and xray machines.

Apparently even when removing a chest tube under very controlled conditions, there is a chance air will enter the space and cause a problem with pressures. This can collapse a lung and cause general havoc. So you can imagine when a chest tube makes an impromptu exit, there is high cause for concern. Before we knew it, the surgeon on call arrived, determined the tube had to be pulled and fast. He offered quick apologies that he did not have time to prepare a better scenario and that we had to be there to witness this. Then with a 1, 2, 3, he pulled what seemed like a solid 6 inches of tubing out of my baby as Mac lifted his back and screamed with panic.

Then it was over. They packed the wound where the chest tube had been with Vaseline saturated gauze and I scooped up McKay. He melted into my chest. It was the first true hug we'd shared in more than a week. And with the chest tube out of the way, it was possible.

They started an IV, took another xray, discontinued any further food or drink for the night in anticipation of surgery to replace the tube in the morning. The morning came; this morning came. Another xray. Things looked the same. Hmmm? What to do? How does a kid go from putting out 200+ml of drainage with a chest tube, to maintaining the size of his current effusions with no chest tube?

Whatever the answer, the surgeons are willing to wait and see if he'll maintain. If he does, great. If he doesn't, they will reinsert the tube when he needs it. So we watch. And wait. And hope for the best.

No chest tube this morning meant Mac was virtually free to do what he pleased. He wandered like a drunk out of our room and into the hallway stumbling, but never falling, from wall to wall. He charmed the nurses, found the playroom, explored, colored, and then cried exhausted and was happy to be back to his bed for a nap. So he sleeps and I type; hopeful this little twist of fate provides just the jump start we need to find our way to the door permanently. It would be just like Mac to decide when, where, and how he makes his exit. This is his show, 100 percent.

How Do You Mend a Broken Heart?

2010-07-17T19:21:00.010-06:00

Things continue to stay just about the same in the step-down lounge. Still battling effusions. Still some decreased function in the right lung. Still waiting for Mac's chest tube drainage to complete its evolution from river, to stream, to brook, to trickle, to drip, drop, gone.

We are encouraged. McKay took a few shaky, but unassisted steps today and for the first time in a week seemed motivated to get to something, somewhere. He lunged for a sparkly pipe cleaner a woman was using to decorate the windows today and made off like a bandit. He was frantic to get to the train track in the playroom where standing to drive the engines proved a bit too much and, frustrated, he started throwing the trains and crying. Bad behavior, but passion nonetheless. And passion is what I like to see in my fighter.

The battle to keep Mac's original chest tube rages on. For the last two days they have secured the bloody mess of a site with gauze and tegaderm trying to stabilize the tube and give McKay time to be done with it. Replacing the tube, which would require another surgery, is to be avoided at all costs. Assisting the doctors and nurses in changing that dressing twice a day is about more than a mother can take, however. I pray the fluid will subside and we can be done with the entire chest tube fiasco soon.

As we approach 10 days in the hospital, almost 14 since we left home, I thought I might share with you some of what it takes for a 22-month old to mend his broken heart.

(The pictures that follow may be a bit graphic for some--I've tried to choose wisely--but know that you've been warned.)

How to Mend a Broken Heart
(or Just About Anything)

Show up.
That's half the battle in life anyway.
Show up with your Superman shirt on and people take notice.

Allow what needs to happen to happen. It's scary and painful and not at all what you'd prefer to be doing, but sometimes you must simply embrace the necessary.

Employ experts to be at your side. Recovery is complicated. Trust in those who have gone before to help get you through.

Involve your team.
There is no substitute for genuine love in life's toughest moments.

Nourish your soul with fervor.

Be willing to look deeper. Sometimes revealing the change to yourself and others can be the hardest part.

Take time to enjoy little moments. Soak your feet. Make a splash. Do the things that put a smile on your face no matter how serious the situation.

Despite how well you think things have gone, take time reevaluate your results. Follow up is the most important part of assuring the changes you've made will last.

Stay clean. Stay pure.

Rest when and where you need it.

And keep smiling no matter what. Even when the world tells you that you've every right to complain, avoid it.
An optimistic spirit heals.

Best Thing, Worst Thing

2010-07-15T20:44:00.005-06:00

Every night at dinner we play a game with our boys called: Best Thing, Worst Thing. Each of us takes a turn telling the very best of what happened that day and the very worst. I love this game because it teaches my boys that we can talk about anything as a family. I also love this game because on many days, my boys joyfully report: There was no worst thing today!

Here's the breakdown of Best Things/Worst Things from another day in the step-down lounge...

Best Things:

McKay took two wagon rides today and attempted a few shaky steps--the first he's taken since last Friday. He's pretty weak and wobbly for reasons that range from not eating for a week, to healing, and to being basically bed bound until yesterday. He did great!

We are not allowed to leave the cardiac floor for our little outings which means we have to make lots of circles. But there is a nice view from a huge window that looks out onto the busy street below. McKay watched the cars go by for a good 15 minutes there today.

I ran in, out, around and through the Penn campus today. I sweat and felt much more optimistic for it. I also felt completely satisfied at not having to be a college freshman again--oy!
I was also not a brat today. (Complete self assessment, so take it for what it's worth.)

Worst Things:

McKay had a very restless night. He was in a lot of pain and could not get comfortable enough to fall asleep. The nurses and I have been telling the IV and Cardio teams for two days that the IV in his right hand was going bad and his chest tube insertion site was becoming a concern. Today it all came to a head.

After screaming through the initiation of another course of IV meds, Mac's IV site started to bleed. Finally! We were actually happy about this because it meant the IV team had to change it. It seems Mac's audible protests of pain were not enough for them who kept telling us the IV was fine. But when it bleeds, they have to change it. So that meant his carefully wrapped and protected club of an IV-equipped hand switched from right to left where another IV has now been inserted.

Now it was time for some answers on the chest tube. CT surgery came by and said the site was irritated, but fine.

An hour later I was laying in bed with my guy and happened to notice blood soaking through his shirt. When I lifted it up, his belly was a mess.

A CT surgical assistant came in immediately to assess the situation. You see, chest tubes are surgically placed through an incision made in the skin of the stomach. The tube runs under the rib cage into the chest cavity where it allows all excess fluid an escape route. It is surgically inserted and sutured in. Pretty serious stuff. The problem is that when a chest tube gets blocked by a clot or other obstruction, the fluid tries to find the path of least resistance out of the body--aka the hole in the skin of McKay's stomach where the chest tube was inserted--and begins to escape.

It all meant a Class A mess on our hands and a warning that the hole they created for McKay's chest tube is now so large and the skin so disintegrated, they will be unable to stitch it together once they remove the tube. McKay will likely go home with a large open wound which will simply have to heal from the inside out. Gross.

Furthermore, if McKay does not stop draining in the next day or two they will have to take him back into surgery, cut another hole and insert a fresh chest tube. Please no.

Needless to say the entire thing is literally and figuratively a bloody mess. McKay was shaking and purple from holding his breath as the pain of them trying to secure the site today was simply too much for him, even with the help of a little Oxycodone. I truly hope he will forgive me for the dozens of times I've had to hold his tiny little fists down and whisper, "It will be okay," when clearly nothing is okay in the moment. I hate lying.

The entire fiasco wiped little man out for the next several hours. And like the angel he is, he curled up like a cherub and fell asleep. Hopefully to dream of better days to come.

Overall, to say this kid is a trooper would be selling him short. I have honestly never known ANYONE tougher or more splendid in forgiveness and unconditional love. And I think most children come equipped with the same trust and love I see in my McKay. Somewhere between where he is and where life ends, many lose that. So many become suspicious and distrustful and sometimes downright unkind. I worry that this nightmare of an experience for McKay will hasten that process--making him protective, concerned and guarded when trust is what's needed to usher in possibility. I pray it won't.

For now, we're hoping for a rapid decrease in Mac's still considerable chest tube fluid. No more fluid, no tube. No tube, no hospital. No hospital, HOME. If you're already on your knees, we'd appreciate a prayer in that general direction.

Much love--xoxo.

Patience

2010-07-14T20:30:00.006-06:00

McKay managed to turn a challenging morning into a
golden afternoon, complete with a visit to the patients-only playroom.

________________________

I was kind of a brat today. I share that only because we're friends.

Here we sit on day five after a radical open heart surgery on my 22-month old son, and things simply are not moving fast enough for me.

Yes, you spell that: B-R-A-T.

It may have well been the cumulative effect of five days of 4 am xrays, 5 am blood-curdling blood draws or that fact that McKay's chest xray came back unchanged for the third day in a row. GRR. Oh, and they put him back on oxygen this morning because he continued to de-sat on and off all last night. By 9am I had pretty much decided it was not going to be a successful day.

I packed a bag of dirty clothes including Mac's cannot-be-without striped blankie he had just puked up all his meds onto and walked my vagabond self to the washing machines in the family area of the hospital.

This is it, I thought. Mac is still draining like a soda fountain from his chest tube and this is going to be our life for a while. I tried to take a deep breath--that's what I always tell my boys to do when they're upset--but I could not get my lungs to fill. I was carrying a weight of my own making and I had attached it right to my chest for me to feel and all the world to see.

Matt tried to console. To check in. But I blocked him out.

He gave me a kiss.

"I am not about to make out with you in the hospital," I told him.

"It was just a kiss," he said.

Yes, that spelling again was B-R-A-T.

To make matters worse I had decided that the agenda for the day included me returning from the laundry to load McKay up into a wagon and take him for a stroll around the floor. If I was going to will him better, it was going to start today.

Instead, when I returned he was tethered to a good 90-minute course of various IV drugs. GRR.

The meds always wipe him out. So he slept for a solid 4 hours after the push. I was getting impatient and worried about MY wagon ride.

Matt came to me and said, "I mapped you a run. You need to get out."

It was true. I have not left the hospital since last Friday. I know in my head it's an unhealthy thing to eat, sleep, and worry in this place around the clock, but I simply cannot leave him. Cannot.

Mac woke from his nap. We loaded him in the wagon and we rode. We rode to the playroom where he was in heaven for about 15 minutes. And then he was tired of sitting up, tried to lay on the floor, and we promptly loaded him up and returned him to bed.

In our short time in the playroom, however, we met a little girl from Tennessee who showed up with her family to get her Fontan operation a long while ago and was told she was not healthy enough for the Fontan and instead got listed for a heart transplant. So they wait. Miles away from home. On a twist of fate they never planned.

On our way back we passed the room of another little girl whose grandmother said before they could take a walk, the nurse had to take her vitals. The tiny little three-year old promptly turned around and jumped into her bed ready for the nurse to do her thing. "That would be nice," I remarked to our nurse who was all too familiar with McKay's tendency to act like he's having his arm sawed off when they take his blood pressure and temperature every four hours. "She's been here for 7 months," the nurse replied. "It's not nice, it's sad."

So the moral today, the day I started as a pity party, but ended snuggling with an ever-improving son who continues to be a gift from God, is this: PERSPECTIVE IS EVERYTHING.

I left the hospital tonight. I left Matt to have some alone time with McKay, and to take a walk and check out the course my sweet hubby charted for me; one I will run tomorrow. I thought a lot about how I chose to act and feel this morning. I knew many would say it was justifiable. But I also knew it was not of God. I am grateful for His mercy and His continual patience and love and perspective.

Here we are. Recovering. From the heart repair we begged for. Performed by the surgeon God has best prepared to administer it. My son is alive and making progress. And, eventually, we will go home. WE ARE BLESSED.

Tomorrow I will get out and fill my lungs and be strong. Because I want and expect the same from McKay. And at this point in the game we all must give our best effort. Because energy, and juju, and positivity, and expectations can be beautiful things if rightly placed, patiently adjusted, and consistently applied. Tomorrow will be a new day. I promise.

90-what?!

2010-07-13T12:30:00.003-06:00

Right now, this very minute, Mac's oxygen saturations are at 91 on room air.

I know--Get. Out. Of. Town. :)
But it's true.

They turned off the O2 this morning and he's holding his own.

This is life-changing stuff.

Day Four: Reasons to be Encouraged

2010-07-12T16:13:00.004-06:00

Making himself at home in the step-down unit.

This morning we celebrated a simple chest xray that came back clearer than yesterday.

But then the day went a bit south.

McKay was not at all happy.

To make matters worse, every time he sees someone walk by the door to our room, he gets upset.

And if they walk in?

Forget about it. It's tears before they even touch him.

I hate seeing him so jumpy and distrustful.

By mid-afternoon the whimpering was more than he or I could take and the nurse agreed a late afternoon spent in the fog of some decent drugs was worth considering. Even more so because lots of people would be in and out because...WE WERE BEING MOVED OUT OF THE CICU!

Hooray! We're now in the cardiac step down unit and McKay must know it because he's been a different kiddo since we arrived.

A break from the pain of healing seemed to be just what he needed. His first item of business was to take a nap on his belly--incision, chest tube and all. It made me very nervous, but the nurse assured me he was fine. And he looked so peaceful, I had to believe her.

Next, we played Thomas. And despite all of the tubes and wires still attached to Mac's distended little belly (it's full of gas), he decided to sit up and drive his trains properly.

Of course, Dad was right by his side to support his every wobble and offer a little choo, choo, choo action.

More than one nurse has said "These Fontan kids seem to pick a day and turn the corner."

McKay is still draining quite a bit of fluid from his chest (550+ mL/day) so I'm not quite ready to say we've turned the corner, but this afternoon he definitely took about a 2-hour peek around it. We'll take it. And while we continue to play a guessing game with his pain level and the meds to give or not give him, we'll hope he gets better at telling us what he needs and continues to take just a few more steps each day. This kid is AMAZING.

Day Four: Encouraged

2010-07-12T06:41:00.002-06:00

Chest xray looked better this morning; not perfect, but better. We look forward to a day of little victories. More to come later.

Day Three: Yucky Lungs, Low Sodium

2010-07-11T11:11:00.003-06:00

McKay's lungs are still a little soggy and his blood work tells us that he is low on sodium. We can do something for the latter, but must simply wait and see with the former. In fact, doctor's orders today are to take a wagon ride to get the pockets of fluid in his chest and lungs moving around, giving them a better chance to drain, and to have him eat as much salty food as he'll tolerate.

For now that means laying in bed after a sponge bath eating potato chips until he falls asleep, then having a wagon adventure royale through the halls of the hospital later this afternoon. Out of context it doesn't sound like a bad Sunday afternoon, does it?

They'll do more blood work tonight and we'll cross our fingers for more encouraging chest xrays tomorrow morning,

For now, he looks pretty peaceful.

Day Three: Prayers Please

2010-07-11T05:46:00.004-06:00

Last night they moved a twin bed into our room so that Matt and I can trade off cuddling and comforting our little guy. He's pretty jumpy with all the people poking at him these days and the nurses feel he'll need less sedation if we stay as close to his side as poissible. Assignment accepted.

Our little sleepover was going well last night until Mac started puking. Poor thing. It took a lot out of him and put me on the hunt for a washing machine to clean his favorite blanket. The blanket was washed, dried and delivered just in time for him to clutch it while they placed another IV in his wrist.

We're hopeful the activity and trauma subside quickly.

Unfortunately, chest xrays this morning showed hazy lungs and some partial collapse. Buddy is breathing much harder today. Prayers please for the fluid to clear quickly.

We're hopeful the news will improve soon.

Day Two: Progress

2010-07-10T15:27:00.006-06:00

McKay came off the sedatives well and even opened his eyes a few times this afternoon. A difficult feat because his eyelids are so swollen you'd think he'd been in a bar fight. They have him on three diuretics right now to try to drain all the excess fluid from his body. His chest tube is still very active and it looks like it will be a day or two before he loses that nasty portal of junk. The good news is that he is draining instead of holding onto the fluid which can be very dangerous, so we'll take it.

I did get to hold him today which was a great milestone in the healing process. He napped and I rocked. It was good couples' therapy.

We're looking forward to a much less eventful night and possibly some real sleep. Thanks so much for all the good energy, prayers and generally good ju ju you have sent our way--we feel it, McKay feels it, and it heals.

Day Two: Good Morning

2010-07-10T10:02:00.004-06:00

Still very sleepy, but even more thirsty.
McKay is making small, but positive baby steps this morning.
With his recovery that is--obviously not his hair. :)

Tough guy had a rough night last night. After an unexpected and absolute knock out from the sedatives administered after surgery yesterday, the nurses had their work cut out trying to figure out the right combination of painkillers and sedatives perfect for keeping McKay comfortable but not completely gone. It was a tricky science experiment that took most of the night. Poor little guy was quite uncomfortable and pretty tense. By about 6am, though, they had it figured out and he's been resting comfortably ever since.

The most encouraging baby steps of the last few hours include:

A thirsty McKay desperate to down as much pedialyte as we'll give him. Little Goliath would probably prefer a steak, but all things in good time.
The removal of his AR line and pacemaker wires

They just decided to take him off of his sedatives and see how he does when the fog lifts. His chest tube is still draining quite a bit which was expected as Dr. Spray decided not to fenestrate. Chest xrays looked clear and good this morning so we're just taking things one step at a time. This is all about listening to McKay as he listens to his body. And all in all, his body has done brilliantly so far.

Update 3

2010-07-09T17:56:00.001-06:00

Just in case you thought that Mac's insistence on sleeping with a blanket over his head could be masked by a lot of drugs, you were wrong.

Matt

Update 2

2010-07-09T14:13:00.004-06:00

Surgery went well. Dr. Spray finished in lightening speed (a local joke I'm told among the nurses that when Spray has your case you'd better be ready because the child will be done and down in the unit in 5 minutes). And while I'm not sure fast is always good, Spray is both fast and good.

I was brought to tears today by an anesthesiology fellow who told me with all sincerity that McKay was treated by arguably the best surgeon and lead anesthesiologist in the world. So good to hear. So good.

Of course that means great groundwork has been laid, but it does not guarantee a clear passage yet. We've been told that we still have 2 to 3 days before we should fully exhale. In three days we should be able to tell how well his lungs and heart are responding to the radical change in pressures the surgery was meant to cause as well as McKay's tendency (we pray not) to have pleural effusions (fluid in and around the lungs) resulting from the change in pressure. Only time will tell and all eyes will focus on the daily chest xray to tell the story.

In the meantime, McKay is having a bit of trouble waking up. A round of painkillers given at 11 am and meant to last about an hour has still not worn off and it's nearing 4:30. He's still out cold. He's breathing well and rosy pink, but we're still waiting to apologize face to face for the semi-ambush he experienced today. Ugg, I wish there was a nice way to tell a two year old what's about to happen to their very sweet heart. Or maybe it's better they don't know. I hope he has to ask me to tell him the story of his scar. I'm sure I can weave one heroic tale of bravery and hope that's not so far from the truth. All eyes are on you to make it one heck of a fairy tale McKay; fight on.

The Big Day: Update 1

2010-07-09T08:23:00.004-06:00

We arrived at the hospital at 6am. That's early, but not nearly as early as 3 am when Mac woke up hoping for a little drink. No such luck bud. And those pre-surgery food restrictions meant a protest for milk turned into a showing of Horton Hears a Who. There are definitely worse things than cuddling with your toddler in the middle of the night.

After checking in with the cardiac center we were taken to pre-op where we discovered a rash on McKay's chest. Really?!? Of course that meant a surgery consult was needed to decide if they would go forward with the procedure. It was soon concluded that the rash was nothing more than skin irritation likely, and ironically, caused by the gel they use to do the echocardiogram. He was cleared and preparations pushed forward. Pictures of our silly, tired little man to come.

They took him back around 7:30am and whisked us up to meet with his surgeon, Dr. Spray. This seemed completely unfair to me as the good doctor clearly had a lead on us from a brain power standpoint going in. Now, we had just handed over our child and we were expected to talk somewhat intelligently to the person who would make some of the most critical decisions of McKay's life for him. Regardless, he was kind and confident and gentle. Exactly what you'd hope for.

He is also FAST. We were just told McKay is coming off the heart lung bypass, being brought out of circulatory arrest and will then have his body temperature warmed back up. Literally back to life. Three short hours. Amazing.

We'll post pics as soon as we can, but so far, so good. Praise be given.

Little Lines

2010-07-08T20:01:00.006-06:00

We all have little lines we draw in life. How far we'll go with this... or how long it will take us to get to that. We draw those little lines in the sand--in our minds--all the time.

McKay has a different little line. One to which I've become quite attached.

This is the second of two large scars McKay bares from his previous surgeries: The Blalock-Taussig Shunt which he received at just two days old and which left him with a large semi circle of a scar that extends under his right arm and around to his back and the Glenn or Hemi-Fontan which left the perfectly-centered beauty you see above.

And I do think it's beautiful.

I'm actually a little sad it's getting replaced tomorrow. Replaced with a new line that will tell the story of his Fontan. I'm sad because this little line has come to symbolize a strong will, a fighting spirit, a reason to be. It was the result of an impossible tomorrow tackled and overcome when Mac was just three months old. It came when I was in a state of mind to think this was a good day:

You see, Mac's tiny little line and me--we have a history. It saved his life. It taught me about hope and faith. Real faith. It taught me what it means to appreciate. Days. Hours. Moments. Time. And it has given us just that: time. But as tiny little lines are want to do, it's time to be redrawn.

So McKay, as I sit and listen to you breathe in the makeshift crib next to my bed tonight too many miles away from home to count, I will not sleep. I will worry and pray and think silly thoughts about missing your beautiful, perfect little gift of a line. Because that's what moms do in situations like this. Because there is nothing else to be done.

I want you to know that today, as we ventured out to the aquarium to see the "ish" (primarily just so I could hear you chant that as we walked past all the tanks, "ish, ish, ish"), I saw in you the man I hope this surgery will help you to become:

You were thoughtful and curious and happy.

You took time to size up the situation and appreciate the beauty and wonder that surrounded you.

And then you walked right up to confront, explore and experience it all face to face.

Please do that for me tomorrow little one. And I will remind myself to do the same.

xoxo,

Mom
_________________________________

If you're curious, here's a little more about McKay's procedures straight from the doctors who will operate on him tomorrow:

Single Ventricles and The Blalock-Taussig Shunt

The Glenn or Hemi-Fontan
The Fontan

Let it Begin

2010-07-07T12:15:00.014-06:00

Here we are. Philadelphia.
It's the adventure we could not stop thinking about but felt would never come. It's finally begun.

We said our goofy goodbyes yesterday morning. Driving away from the house with my boys waving on the porch just about broke me in half. Don't get me wrong-- I'm all about waving good bye for a week to go to Tahiti or Hawaii or anywhere a little sand and some quiet time with my hubby is involved. But this was different. This was goodbye and I'm not sure when I'll be back. This was I will be on the other side of the country, but I will figure out a way to get you whatever you need. This was I will try to bring your little brother back a bit better than when we took him. I don't want many more goodbyes like that.

We breezed through the airport. My good friends and running buddies Randy and MaryAnn called a friend at Delta who helped us to our gate. Security was a breeze--I've honestly had more trouble going solo before. And we all did a happy dance for being allowed to pre-board!

Then we watched movies.

Ate cookies.

And played peek-a-boo.

McKay could not have been better. And except for the guy behind us who had to be separated from his daughter for making her cry (seriously!), the flight was great.

By the time we arrived, McKay was exhausted.

And it was HOT.

When we landed we were greeted with a voicemail that told us all of the local Ronald McDonald houses were full. Incredible. And incredibly sad. So we moved into the local Sheraton, took showers and curled up on the bed. Mac knows how to chill. I hope to take the same picture in a week minus the purple feet!

I brought all of McKay's bedding from home hoping to turn the hotel crib into a familiar and sleep-inducing sanctuary. Wait? He never sleeps at home! What was I thinking? Our first night was less than restful, but that may have had something to do with the 85-degree room. I think the power grid was on overload due to the record heat in Philly and last night we experienced a little energy rationing. Oy, it was hot!

We arrived at the Children's Hospital this morning for a battery of pre-surgery tests and exams. Mac was an absolute champ through all of it.

He had an echo, unsedated, which I was sure was going to go south quickly. But somehow he lasted almost an hour of being covered in goo and wanded over.

They even made him turn upside down so they could scope his heart from the vantage point of his neck. Seriously? What almost 2-year old lets someone do this? Big thanks to Tom & Jerry for distracting us through the experience.

When we arrived back after it all, McKay used the arm that had not been poked for blood draws to drive Thomas until he simply could not stay awake any longer. (I know. He's laying on a hotel floor. Gross. He was promptly sanitized following this picture :).)

So that's it. We're here. Travel was excellent. The hospital was ready for us. We have tomorrow to rest and play and then we're back on Friday for the real deal. We had the "talk" today right before you sign the "form" that says you understand all that can go wrong and likely complications. I hate that. I'm realistic, but much prefer to concentrate on all that can go right. And we are poised to have so much go right.

One last thing...

I have faced some questions about our decision to be here; to bring McKay to Philadelphia. To leave my other boys behind. And I want to explain why--

This decision was made with great difficulty and heartache. We are not drama seekers. We would have preferred the surgeons at Primary Children's in Salt Lake do this in a heartbeat--had they felt comfortable. The truth is that when we met with our cardiologist about McKay's need to take this next step and the fact that the hospital had not yet recruited a senior surgeon to replace our FANTASTIC Dr. Hawkins, McKay's case was presented to the other surgeons. Their response? "Does the family have other options? We will take the case if we have to, but if the family can seek treatment elsewhere, they should."

This is not to say that the surgeons at PCMC are not amazing, fantastic, talented, life-saving miracle workers. They absolutely are. However, in McKay's particular case, their lack of experience doing the Fontan on dextrocardic kids trumped ego. And referring us out to another facility--the nation's leading pediatric cardiothoracic center--with surgeons more seasoned in what McKay needs is the most amazing, fantastic, talented, life-saving miracle they could preform for him. And for that I am grateful.

Philly is hot and busy and poised for miracles. We have done all we can to prepare, now is the part where we let go and let God. We are in good hands all the way around.

Preparations

2010-06-23T22:54:00.006-06:00

Last summer we started talking about next year.
In the fall we wondered what the next nine months would bring.
In the winter we were told we had about six months to prepare.
At McKay's March appointment we were told to plan on July.
Today, we realized all that time was gone.
We are talking about days now.
Just 11 days to be exact.

All the preparations have been made.

My sweet boys will remain behind with friends and family. They are scheduled for fun day and night and will probably be disappointed the party is over when we come home. Let's hope so.

We're on the list for a room at two different Ronald McDonald houses in the Philadelphia area. You call the morning you hope to arrive to see if they have a room available. I usually like to plan a little further ahead than that, but we're learning this journey is all about going with the flow.

We think we've figured out the impossible process of getting a continuous flow oxygen concentrator onto a commercial flight. Lord please help us meet the right people to get us onto that flight without a hassle. I really might lose it for good if we have to fight that battle.

We've purchased a new rolling car seat designed to get Mr. McKay into and out of the plane and into and out of cabs without completely losing our minds trying to carry all of the bags and equipment he needs. He travels like a complete diva. That's okay-- because he is FAB. U. LOUS.

Now all I need to do is find the courage to hand my baby over again. Hand him over to a stranger who although well-pedigreed and unbelievably highly recommended, is still a stranger. He will literally open up my child before him and rely on experience to guide his decisions. Most of which we're told will occur on the fly. Because, of course, there is just no way to know what will work best until they are actually staring at the twisted miracle of McKay's unusual anatomy.

Damn it. I hate this part.

I hate it because I always shut down. I get quiet and bugged and self aware that I am not at all the person I prefer to be. So I try to fix it by not thinking about things. But there he is. All 29 pounds of soft, ticklish love. So I melt into a complete puddle almost daily and start the process again.

Of course not one ounce of this is about me at all. I am just a privileged ticket holder with a front row seat to McKay's journey. And he is happy. He is ready to be free of the cords that are holding him back. He is ready to give up cold, clammy, purple toes. He's ready to trade in arms that look like he's been dying jeans all morning long for something of a pinker hue. He's ready and so are we.

I hope our journey is more comical than it should be; our adventure more heroic than we deserve; and our child more watched over than we can imagine.

We have cheered from afar so many long-shot victories from our precious heart friends. And I'm ready to step up and claim one for my McKay.

I worry a full month between posts can get you get kicked out of the heart blog support group. If that's really true, I'm glad I've barely made the deadline back into your good graces. We need your advice, your inspiration, your I've been there done that, keep getting out of bed and loving your child sensibilities. We can do this because we have seen you do this. Thank you for telling your stories. It helps us write ours.

xoxo.

Philly Bound

2010-05-23T23:00:00.009-06:00

Area codes 215 and 267 have become the trigger for the swarm of butterflies that acts up in my gut from time to time. They're numbers that showed up frequently on my phone last week; all calls that culminated with a whopper from CHOP's scheduling office on Friday afternoon.

July 7: 9:30 am

pre-surgery labs and echo

July 9:

Fontan operation

That's what we know. We'll plan to it and prepare as best we can. We feel certain relief and extreme anxiety all rolled up into an eerie calm. So many details confirm that this is the right path for Mr. Mac. And as much as this is a roller coaster ride for us, it really is McKay's journey to take. We consider it our privilege to accompany him.

Lead on little one.

Yesterday, Today, Tomorrow

2010-05-18T21:52:00.009-06:00

Band of Brothers

I know. It's been a while. Please forgive. But just one week after McKay's cath, we checked back into a room on the third floor via the emergency room. McKay came down with para influenza--a nasty little virus that usually causes the croup. A big problem for little lungs that struggle to keep his system stable without other distractions. He spiked a high fever--103.5. We couldn't get him to sat any higher than 66 on 2 liters. It was scary--for about 6 hours. Then he stabilized.

We snuggled. He slept. I did not. He screamed at anyone and everyone that came within 10 feet. I wanted to (but did not).

His absolute refusal to cooperate and fiercely feisty attitude was enough to convince the doctors that he'd be just fine at home. I'm not sure who cried "uncle" first--the doctors or Mac--but the end result was the same. We were discharged with the promise to vigilantly monitor what would be the sure progression of the virus.

But this little fighter, whose spirit apparently runs as deep as his little comprised immune system, was over it. Indeed, that scary night was the beginning and the end of it. An occasional dry cough followed three days later and lasted only that long. It was over. I swear; this kid is such a fire drill.

~~~

In better news, we had the chance to squeeze in some long overdue family pictures last month.

This one is all kinds of handsome and heroic. His spirit overwhelms me and I am humbled.

This one surprises me every day. He is joy, and laughter, and rocket-propelled potential.

And, oh, my sweet leader of the pack. You are a mother's dream. Proud. Proud. Proud.

Our crew is happy.

~~~

We've spent a fair amount of time on the phone with Children's Hospital of Philadelphia (CHOP) this week. They've accepted McKay's case and Primary's still doesn't want it. Deal done. Dr. Thomas Spray will be his surgeon. Let the paperwork begin.

We've been told we'll be assigned a surgery date some time this week. And I feel more sure than ever that it's time. It's time to let this boy run. It's time to make plans for him that extend beyond this surgery. It's time to give his body a fighting chance at keeping up with his spirit. Sometimes you just know--it's time.

Home Again, Home Again

2010-04-26T21:36:00.003-06:00

Yep. Lickety split. We're home.

McKay is doing well tonight and we're gladly resting at home because they didn't really find much to do once they launched their little pleasure cruise inside his little circulatory system today.

Unfortunately, the cath wasn't able to tell us much about what's going wrong. On the bright side, it did show how much is going right. Dr. Gray called McKay "The poster child for the Glenn" operation. This means perfect pressures. Impeccable valves. Gorgeous pulmonary arteries. And no collaterals to speak of. Hmmm. Then why the ever-devolving crappy sats?

While we discussed many theories today, it's likely we won't know what's going wrong until a surgeon actually gets a good look at him. In other words, they'd have to open him up to know any more than they know now. And while we still need to have a good chit-chat with our cardio angel, that likely means there will be no putting off the Fontan. Little man needs some intervention fairly soon and they've done all they can do short of operating at this point.

I'll post some great pics of Mac's anatomy once I have a chance to scan them in tomorrow. I just fell down the stairs on my way to grab this computer. I'm going to take that as a sign that sleep is required--and soon. Until then, enjoy the pics of my cherub in recovery this afternoon. What mother of three busy boys gets five uninterrupted hours of cuddling? Today, I did. Praise be.

Underway

2010-04-26T12:47:00.003-06:00

Mr. Mac was a very good boy this morning. Oddly better than I expected for an exam and procedure scheduled hours away from when breakfast should have been and smack dab in the middle of nap time. Mind you he was not perfect, but he was cranky only when provoked (or poked) and Leo, June, Quincy and Annie instantly calmed him.

They expect the procedure to last about three hours. We'll try our best to keep you posted. Here is an inside view of the cath lab. Such a big room for such a little guy. If you look hard you can see his tiny toes. I must say walking away is not getting any easier.

Feelin' It

2010-04-25T10:45:00.007-06:00

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

2010-04-11T19:40:00.004-06:00

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

2010-03-23T20:34:00.003-06:00

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...

2010-03-12T13:44:00.010-07:00

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

2010-03-06T12:26:00.008-07:00

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

2010-03-06T12:05:00.008-07:00

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

2010-03-03T14:59:00.009-07:00

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.

FIVE

2010-02-23T11:00:00.006-07:00

That was then...

This is now...

You are so ready to be five.
So fun.
So kind.

So Tom and Jerry.
So clever.
So Star Wars.

So smart.
So loving.
So Legos, Legos, Legos.

So hilarious.
So full of sunshine.
So, so, so glad you're mine.

Happy Birthday Presto Majesto!

You are loved beyond words.
We feel so fortunate to be your parents.
A front row ticket is all we ask--a front row ticket to see what amazing things you'll accomplish with the bright mind and strong will with which God has blessed you.
Honor your talents, honor your passion, and we will do all we can to help you find your way.

xoxo,
Mom and Dad

Open Letter to Paul Cardall

2010-02-17T21:40:00.004-07:00

Dear Paul,

I attended your concert on Monday night (with 2,699 of your fellow admirers). I sat in the 12th row, very near your parents. Black sweater. Skirt. Boots. I'm sure you saw me. We met once before--at Gracie's funeral. I thanked you for being 30-something and alive. My little McKay was just a few months old and I needed to see a boy with a broken heart grown into a man with a pure one. You were inspiring to me then, but Monday night you transcended into something more.

As I stared and wept and wondered at your miracle so eloquently represented through music and video and tribute, I had an epiphany of sorts. And it's that gift of revelation/realization for which I need to thank you.

You see, because you are who you are, because you're living the life you're living, it is not naive or strange for me to cling to the vision of a man with a family, career, and dreams for the future as I think toward tomorrow for my own little fighter. It's not strange because there you are.

It's not foolish for me to think he will have friends, passions, and adventures. It's not foolish --because you do.

It's not wise for me to protect him from life, to shelter, to guard. Your mother let you live and you found reason to keep doing it.

And it's that living, really living, I admire most. Whether my baby gets 20, 30, or 100 years on this planet I pray he will fill his days with the kind of living you've done. Living to glorify the gift of today. Living with appreciation for moments big and small. Living to honor his maker who created him with all the heart he'll every need.

Thank you Paul! Thank you for hanging on when it was more than anyone could have asked of you. Thank you for sharing your journey and your spirit. Thank you for reaching out and changing fear into hope, uncertainty into vision, worry into gratitude. There are so few true heroes on this planet--you are among mine.

With all my heart,
Mindi (McKay's mommy)

Now That's Service

2010-02-09T14:13:00.003-07:00

You know you've reached an entirely new level of the medical stratosphere when you call to request a-right-now-if-please appointment with your pediatrician and they not only make it for you, but have the office manager call back to assure you're happy with the time.

Most of the time service like this follows some sort of near-disaster or temper tantrum, but on my honor I swear we've not been a party to either. I think we've finally hit the high-rollers club. It's not Vegas, but we'll take what perks it has to give. Today, it gave us a much needed appointment to check out Mac's ears.

McKay is holding his own as far as the RSV goes. I believe the monthly Synagis injections he receives during RSV season to help mitigate the effects of the virus are really doing the trick--at least for his lungs. His nose and ears are an entirely other story.

We greeted an absolutely inconsolable McKay about 3am this morning. Unfortunately there was nothing to be done for his whimpering but wait it out until morning. His right ear had begun to drain a horrible brown fluid that had infection written all over it. As I understand it, McKay will still get ear infections even with his newly-placed tubes only now there is a hole in the eardrum that allows the infection to escape rather than fester. Last night gave me my first visual confirmation of that theory--not pleasant.

The pediatrician assured me this was an indication that the RSV has probably reached its peak as Mac's little body is producing as much fluid when and where it can. He sent us home with a prescription for ear drops and a back up prescription for antibiotics should the ears not improve quickly. A clean $111 later for the drops and we were on our way home.

He's taking a much deserved nap now after a rather traumatic morning and breathing just fine. We'll visit with the ped again next Tuesday (hopefully no sooner!) just to maintain our high- roller status and make sure Mac's on the mend for good. He's one tough cookie.

On with the Show

2010-02-07T21:01:00.004-07:00

I've been waiting. Waiting. Wanting. Wishing. Hoping. Waiting to make my next post because I was just sure the next entry should be about McKay's first words. I guess I should of remembered what my grandfather taught me about wishing. "Wish in one hand and spit in the other--see which one gets full first."
McKay's ear tubes and echo went so well that we packed up that very night and drove down to Southern Utah for the weekend. I love running the annual half marathon every January and McKay seemed as right as rain so we hit the road.

We made the trip with friends and it was a busy, but fun weekend of doing something--ANYTHING--different. It felt good to get away.

All the stress of the week paid off as I ran and ran and ran my way to my best half marathon time yet--a 1:45! They even had photographers out on the trail this year to capture the journey for me. They obviously used a high speed camera to capture such a crisp image of my wind-like motion :).

The kids had a great time exploring the red rocks with their friends. And Ty celebrated his second of what seemed a never-ending month of "I'm 7 Now!" cake and ice cream events. Whatever. Birthdays are magical--the only day (or month) of the year that's YOURS. I love to do them up right for my boys. And Ty is just about as great as they come. I feel like everyday he's becoming a new person. One I have to chat with and interview and ask hard and bendy questions to make sure I understand where he's coming from. In many ways I feel like I'm meeting him for the first time. And you know what's even better? I like who he is. He makes me proud. He is smart and funny and kind. His heart is solid gold. In fact, we may need to switch faiths in order to join a religion with a paid clergy. He's just that good, through and through.

Then we came home and I waited. I waited for the miracle that was supposed to be tubes. "Oh! Your life will be completely changed," people told me. He'll sleep through the night. He'll eat better. He's react and move and light up to sounds like he's never done before. So I waited. And I watched. And I loved on him. But the only thing that's changed with my dear and darling Mac-aroni is this:

Despite our very best efforts to isolate and protect and provide all the best preventative medications, McKay somehow, somewhere, can't-think-about-where-it-came-from-or-it-will- drive-me-right-to-the-edge has contracted RSV.

He's home. We're watching him. Giving him steam sessions and syringing every drop of mucus we can get close to. And we're waiting. Waiting. Wanting. Wishing. Hoping. Hoping that somehow his just-last-Tuesday dose of Synagis will ease the symptoms and prevent the virus from multiplying as it normally would. We're beyond hoping for words this week. We just want him to breathe. So far, so good.

Tonight it's on with the show at our house. And in our version of normal, we're shrugging our shoulders and counting our blessings. All in all things are good. I have spent today weepy with a sense of gratitude for the gift of perspective Christ continually gives to me. Just when I seem overwhelmed with worry or want for something I cannot control, God consistently steps in, let's me know He is there, and redirects my path to more productive pursuits. I have talents to give. I have love to offer. I have pain to feel. But mostly my life is joy. And I have His tender mercies to see me through it all. No more waiting. No more wishing. Because He will make sure today has everything I need.

In and Out

2010-01-21T15:36:00.002-07:00

Today went well. Mac was incredibly cranky this morning after resting little and eating less than normal. By the time the nurses got to their poking and prodding he was not to be messed with. That said, he made it through both procedures with flying colors. We were home just four hours after we checked in.

Mac is a champ. More to come when we have the time.

Thank you so much for all your care and concern. This was a minor hurdle, but we're glad to have cleared it.

Twofer

2010-01-20T16:02:00.004-07:00

Tomorrow's the day. Ear tubes and an echo. It's a veritable twofer.

We ask for your best thoughts, a little room in your prayers, and for McKay to unveil his first words on Friday.

I realize that last one might be a little too much to ask. But I have a feeling he's been saving up.

He's such a tease.

The Pudgy Arm of the Law

2010-01-14T21:11:00.004-07:00

Mac is officially a walker now.

But he doesn’t walk. He swaggers. Like some wild west sheriff taking stock of his town.

His arms hang straight down to the side, a slow side-to-side momentum in the hips, legs spread far enough apart to slow the ache from being saddle sore.

His tipsy ways make you wonder if he’s just come from the saloon or if he’s reeling from an outlaw’s fist to the chin.

I’d ride off into the sunset with this kid any day of the week.

Now Hear This

2010-01-12T22:40:00.009-07:00

This was going to be a smug entry about how prepared I was to meet our newest doctor today. How I ordered McKay’s complete medical history. How I tabbed out all the relevant visits. How I documented the timeline his last six months of near continual antibiotics and how this entire ear fiasco has now reached its crescendo in an inexcusably late visit to him, a specialist. In short, I was obnoxiously over prepared for our visit with the ENT today.

Instead of inspecting the oh-so-impressive paperwork I had prepared, we chatted. He scribbled notes and I rattled off procedure dates and recounted courses of medications. We talked about events to come this year and how important it was that Mac had the option of antibiotics that work when he needs them and a body that has not been so overexposed it refuses to cooperate. Then he took a good long look into Mac's tiny ears.

And the verdict is…

Tubes. After taking McKay’s history, our new specialist agreed we needed to check this little complication off our big guy’s list. Then he impressed me. Most docs, it seems, don't like to share. Procedures. Operating rooms. Focus. But he asked if I had any objections to doubling up on procedures when they sedate McKay for an echocardiogram in the next month or two. Absolutely not. The less anesthesia episodes the better. It was a move that showed his humility and respect for Mac’s heart...and mine. Love that.

More details~Because of the fluid that is constantly behind McKay’s eardrum, the doctor estimates he is experiencing a 30 decibel or 20-30 percent hearing loss that could be immediately reversed with tubes. We talked about his speech delay and other developmental milestones that have come and gone. "He'll catch up," he said. "Don't worry."

Beyond eliminating the physical pain of constant ear infections for McKay, on a selfish note, I just want to hear his voice. I’ve waited entirely too long and worried entirely too much about this little man not to have earned a word or two. I think hearing him spurt out “mama” will make an absolute mess of me.

So here’s to plans of action. To trusting. To hoping. To hearing. And, of course, to “mama.”

________

Update: I just spoke with the hospital. Cardiology and Otolaryngology have agreed to coordinate McKay’s next sedated echo and his ear tube surgery next Thursday, Jan. 21. Less talk. More action. Gotta love that.

My Little Yogi

2010-01-08T10:03:00.010-07:00

I started doing yoga about a year ago. After days of letting the pavement pound my joints, it seemed like a good idea to treat them to a good stretch for at least an hour a week. Although I've really come to love my yoga class, I'm only able to squeeze it in once or twice a week and I am still very much a beginner.

Yoga as exercise (especially to a runner), can be deceiving. This slow-moving, intense movement is not as easy as it looks. As the instructor leads you through a series of poses you are asked to balance, lift, and shift your own body weight, stretch muscles heretofore undiscovered, and redirect blood flow from your legs, head, and arms. I have left one hour of yoga more sore than I've ever been from some of my longest runs. But it's a good, deep, man-I-worked-something-important-today sore. And at the end of each session I feel a serene sense of calm, center, release.

Of course yoga is an ancient practice that has survived through centuries of diets, infomercial gadgets and miracle pills. And if I had any doubt it was built on a study of the body's natural movements and needs, my little yogi has put that doubt to rest.

Over the last few months, McKay has taken to one particular yoga pose: The Downward Facing Dog. I've done my best to capture his yoga prowess in pictures, but he is so unpredictable with it that by the time I grab the camera, he's through. The best I can do for you is this shot from last summer with his physical therapist. He now gets into this position all on his own and we've seen him hold it for up to a minute.

I mentioned his like of this position to his pediatrician at his Synagis appointment on Tuesday--by the way, it's been two weeks since the Rocephin shots and there's no sign of another ear infection!!-- and he grew intensely interested. After a discussion of when and why he might be throwing himself into the downward dog several times a day, he mentioned something to me about "Tet movements."

According to Mac's doc, Tet movements were dubbed so when doctors observed kids with a congenital heart condition called Tetrology of Fallot getting into body positions that promoted increased blood flow or decreased pulmonary pressures. It can be a headstand, a deep squat, anything that opens up arteries and increases blood flow. Interesting, no?

He theorizes that McKay can sense when he needs increased blood flow to the brain or decreased pressure in his pulmonary arteries and so assumes the downward dog position until he feels better. Mac's pressures have always checked out great through echos and a heart cath, so I'm not overly concerned with the new practice. Of course I will discuss all this with McKay's cardiologist, but for now I am absolutely fascinated by the idea and wonder if anyone else has experienced this with their kids.

The additional bonus to Mac's little workout routine is a decidedly stronger upper body and the ability for him to transition from the floor to standing without any assistance. It seems daily yoga is making McKay stronger.

I just thought I'd chronicle this little oddity and ask if other heart families have observed similar behavior in your little ones. Because, hey, if there's enough of us, perhaps we could start a studio. How posh would that be? :) Namaste.

What's Out, What's In for 2010

2010-01-01T09:28:00.009-07:00

Out with a neurotic need to control the details;
in with the mojo required to let good things happen.

Out with crowds of others to please;
in with soul mates who take me as I am
and remind me who I can be.

Out with treadmills to nowhere;
in with runs that respect the journey.

Out with pandemic illness and worried nights;
in with health in mind, body, and spirit.

Out with fighting what is;
in with welcoming all that can be.

Out with lectures;
in with example.

Out with frustration;
in with laughter.

Out with chaos, unrest, noise;
in with the peace of three busy boys.

Welcome 2010.

You will be a decade of changes. And victories. And joy.
Deep-down, cannot-put-words-to-it, beyond-the-smiles-on-our-faces JOY.

We will look for it everywhere. We will find it in everything.

Because you usually get what you expect.
In life. In people. In every day.

Here's to a truly Happy New Year.

This Christmas

2009-12-27T09:32:00.005-07:00

Despite our distractions, this Christmas has been a season of simple joys.

Chilly trips to see the lights

with silly brothers who (although they would never admit it) are best friends.

New pajamas on Christmas Eve.

The togetherness of opening gifts,

and watching months of anticipation end in priceless smiles.

It was figuring out new toys,

and taking time to relax with a good book.

Christmas was family.

We were together and happy.
Bring it on 2010--we have each other.

The Spirit in Which It's Given

2009-12-23T21:13:00.008-07:00

Our Monday appointment went far better than the Sunday fiasco. My regular doctor and all his great nurses were on the clock and they helped make the best of a bad situation. Despite a few days on steroid treatments, Ty's still junky cough earned him a series of chest x-rays. Maybe pneumonia, the pediatrician said. Awesome, I thought.

While Ty went with the nurse to get x-rays, we took a look to see if McKay's ears had made any progress on the new antibiotic. They were still infected, but had stopped pussing. I piped right up and said after talking to so many people whose children have tubes in their ears, I was convinced we should go forward and relieve my little guy of at least this one battle. My normal smiley pediatrician then pulled back and got very serious. McKay is not every kid, he said. This is a huge decision for him. If there is absolutely any alternative to tubes, we must pursue it. He then said he wanted to give Mac the last round of shots and an additional two weeks to see if his body could clear the infection. If not, then we would consider the tubes. So two more weeks it is. I may need a second opinion in the interim.

By the time Mac's shots were being drawn, Ty's x-rays were back and thankfully they showed no signs of pneumonia. However, his still reactive airway was begging for some additional assistance. Ty, too, was put on a two week trial with a twice-a-day inhaler. He's almost done with his oral steroid pill and it can come none too soon for Matt and me. The drug turns Ty into a whirling dervish. I cannot imagine him being more active or chatty than if he had just downed a candy bar and a Coke. One more dose. Just one more dose.

So it's more of the same here. Waiting. Hoping. Doing what we can. And praying.

I've done a lot of thinking this week on the word Spirit. The Christmas Spirit. The Holy Spirit. The spirit that resides in our home. They are all gifts. But they are not gifts that are so much given as they are received. No one can give you the Christmas spirit. No one can award you the companionship of the Holy Spirit. And no outsider can impose a permanent change of spirit in your home, your life, your heart. No; the spirit in which you live, rely on, and trust is determined solely by what you are willing to receive.

And, as you know from my last rant, I have not been willing to receive much of anything these days. My shield has been up, my sword drawn. And yet I was fooling no one. I was helpless to defend my brood from what felt like vicious, unwarranted attacks. And finally I was defeated. My cry to the Lord was to make it stop. It should have been to help me understand.

I received an answer to my prayers this week, strangely, in the form of a phrase that has been playing like a broken record in my head for about three days now. I want to think it's from a poem I've read somewhere, but something tells me it was written just for me:

To live life in this body was more than He could ask,
That's why I volunteered in a life already passed.

No, I usually don't receive answers to my prayers in prose. But this particular little couplet has been a reoccuring thought I cannot explain. As I search for answers as to why McKay (or any child) must come to this life in an imperfect body, or why our little ones must suffer at all, the more I am convinced it is more about us and less about them. We have much to learn, and they have much to teach. And for some reason, as part of a plan that is far bigger than I can understand, they proved their allegiance to our Savior through the ultimate act of love--they volunteered to accept a calling less glamorous or easy than we were willing to take. I strongly believe they were not compelled or sentenced or made to accept the life they were given. Instead, they gave freely and accepted a role that requires only the most brave and most pure volunteers.

The reality is that Mac is a perfect innocent who has experienced more pain in his 16 months on the planet than many of us will (or could) endure in our lifetimes. And yet he smiles. And yet he loves. And yet he trusts.

It's that last part, the trusting, that's growing increasingly harder. I want to see the plan in all this. I want to trust doctors and nurses and all the people that surround us and make decisions about our life. I want to trust that they see US. Not our case. Not our bill. Not our situation. I want them to see US. We are a family that's fighting to stay together. We are a family that loves each other. We are PEOPLE. And lately, I felt treated, but not seen. That makes it hard to trust.

Lately the Lord's lessons have come in torrents and floods, they have involved my children, and often leave me in tears. But I am trying to learn and I am trying to trust. Because they are far wiser and far better than I. Both God and my sons. And the spirit in which these trials are given is one of love and growth, but mostly love. I know my Savior loves me. I know he is closer to my children than I can possibly imagine. And that's the spirit in which I need to receive what He has to give.

It's Ugly in Here Today

2009-12-20T15:33:00.006-07:00

Warning: This is not a happy-go-lucky, feel-good post.

I know it's Christmas, but I am not in a place of tolerance, acceptance, love and openness. Today, I'm angry. Make that livid. If you've vowed to stick with our little story through thick or thin, this would be the part where I'm wearing a little thin.

This weekend we're in the thick of yet another respiratory episode for Ty and the fourth month of nearly continuous earaches for McKay. The inversion has really settled in the Salt Lake Valley and as a result Ty's had a progressively harder time breathing. By Saturday morning, it was obvious Ty needed to see a doctor. Lucky for us, we had our regular 10-day follow up scheduled with the boys' pediatrician to take yet another look at McKay's ears at the conclusion of yet another round of antibiotics. So I called the doctor's office and let them know we would require a double header and loaded the boys into the car.

They immediately hooked Ty up to the pulse oxygen machine where he posted between 88-91. In my mind I pleaded: Please no ambulance, please. After all, letting it get to that point once is somewhat forgivable, but twice? Even I would question my ability to properly care for my child.

"He's borderline," the doctor said. "Let's give him a breathing treatment and see how he responds."

Ten minutes later, Ty's numbers looked slightly better (94-95) and the doc had backed down a bit. "Albuteral treatments every four hours and a steroid pill twice a day for five days. And I want to see him again on Monday."

I can do that. Now for McKay.

As the doctor took out his otoscope I was so ready to hear that everything looked great I about fell on the floor when he said his ears were worse than ever. The antibiotics aren't even touching his infections anymore.

"Now what?" I asked.

"There is one last, intensive treatment we need to try--Rocephin injections," he said. "Two shots, once a day for three consecutive days."

Two shots because Rocephin, in addition to being a powerful broad-spectrum antibiotic, is like peanut butter and they have to mix it with a numbing agent to make it tolerable. The dose is so big and the shot so slow, they break it up into two shots given simultaneously to the backdrop of the most intense screaming I've ever seen McKay do. We got the first dose, I held him on my lap, his arms against his chest. I watched the medicine go in and I wept.

"If he can't clear this infection by Monday, I need to consult with Cardiology about putting tubes in his ears," said the doc. "I've seen McKay change over the past few months and it's obvious the infections have changed his disposition. Couple that with the fact that he has no language, no words yet, and I am very concerned. Both are most likely side effects of the chronic infections."

Yesterday broke my heart.

What is going on with my little men? Everyone hesitates to label Ty's distress asthma just yet, because he had NO asthmatic symptoms until the H1N1 hit. Instead they say he has "reactive airways" at least until he has enough episodes to warrant another diagnosis. Whatever you call it, he can't breathe sometimes and it's scary.

Today, I mustered up the courage to take McKay back for shot #2. I picked and packed an early Christmas present for our trip, trying somehow to make it up to him. But the visit was less than stellar.

Of course, because it's Sunday his regular doctor was not there. No big deal, I thought. It's the nurses who give him the shots anyway. However when the nurse who called us back gasped mid-lobby at the sight of McKay's oxygen tubes, I could feel the fire in my heart ignite.

"Oh my gosh, what's wrong with him?" she blurted out. "He really is so sick. Poor, poor baby."

Really? That's how you react to a parent and child in your office? How discreet. I bit my tongue.

I tolerated her forced pouty face and her continuous expression of the phrase, "poor, poor, baby" through the weight and temperature taking. But by the time I got back to the exam room I could not look at her for fear I would let it fly.

"I just hate giving these shots to little kids. They are so painful."

She needed to stop talking. Now.

I met for a very brief visit with a doctor we've never seen before who then sent the previously mentioned nurse and her I-swear-she-was-12-years-old sidekick back into the office to administer the shots.

I held Mac on my lap again, they both took a leg, counted to three, and jammed the needles into Mac's legs (a small distance from the bruises the shots created yesterday). One nurse pulled up quickly while the other continued to give her shot.

The 12-year-old then shared a choice expletive as she looked at her still half-full syringe.

"I thought it was done, this stuff is so thick."

She walked toward him to stick the needle in his leg again. I pulled back.

"Don't you need to clean the injection site?" I asked.

"Oh, yeah," she answered.

She took out another alcohol swab, wiped his leg in yet another spot, and jammed the needle in again.

I could feel my face getting hot. I went silent and cradled McKay encouraging him to breathe and assuring him they were done now.

"He'll probably be in a lot of pain tonight, you should give him some ibuprofen."

Really? A lot of pain from your incompetence? A lot of pain from the fact he just got three injections instead of two? I thought I might drop her right there.

I am mad. I don't want to be, but I am. And I don't really care if I'm overreacting at this point. It's just all adding up to a little more than I can take.

McKay has started fussing every time I put him in the car. Why? Because he knows he's headed for more pain. He goes nearly nowhere else but to doctor's appointments and it's robbing me of what should be a blissfully giggly toddler. Layer Ty's troubles, a bit of claustrophobia from feeling more cooped up than I'd like, the fact that today was among the very rare times since Nov. 1 that we've been together as a family outside the walls of our home, put it all on top of an already tippy cake, and it's definitely beginning to crumble.

I don't pretend that we're picked on. I feel deeply the "Why us?" game should be "Why not us?" when I look at the big picture of all the care and love we've been able to provide. I think my anger comes from expectations. I expect to feel a certain way this time of year. I expect to have things go our way more often than not. I expect to be able to DO something for my babies. Instead, I feel more than a little helpless today.

So that's it. I'm done. It's uglier than usual today, but it's real. Tomorrow we'll do it all over again and hope for better nurses and a divinely-forgiving baby with a short memory. Until then I invite you to feel a little more in the season and read here about how I hope to be feeling soon.

Takedown

2009-12-15T20:42:00.007-07:00

If, at any time, I worried...

McKay was the one in need of protection...

Clearly, I was wrong.

He is King of the Takedown.

Brothers beware.

(Smotha-your-Brotha Laugh Fest, Thanksgiving 2009
@ Grandma Sheri's house.)

Timeline

2009-12-13T22:46:00.004-07:00

Any time you walk into a children’s hospital with your child, you know your life has the distinct possibility of being forever changed. Whether it’s for an accident, a chronic disease, or a mystery illness yet to be diagnosed, the hallways of those institutions of healing and hope can be a long walk.

I have been dreading our regular three-month cardiology checkup for a good six weeks now. I just had a bad feeling about it. It wasn’t a bad feeling like something was extra-wrong with my babe, just a general annoyance with having to revisit his reality in regular intervals.

I remember the moment we were made aware of McKay’s condition I started an insatiable quest for information, names, connections, explanations, resources and on and on and on. But over the last three months, that part of me has shut down. Yes, I still keep my eyes and ears open, but something has changed and I have turned inward on my babe. As much as I want to give him the best options, the best resources, the best treatment available, I also feel a need to protect him from becoming ‘the sick kid.’ You know the one people stare at but don’t talk to, touch or interact with; the one people either feel obligated to ask about or avoid.

When people ask me about McKay I want to answer with a report about milestones centered on mobility, appetite, speech and all other things oh-so-15-months old. I do not want to assume the interested party expects me to lead with an update on our search for a surgeon, the latest cardiology report, prognosis, or plans. So I don’t. I say he’s fine. I call him a stinker when he’s a stinker. I’ve been more normal with him and it feels better.

Call it denial. Call it going numb. But I needed to change the focus. And going back into visit the cardiologist meant the pretending was over.

The usual weight, height and sat measurements were taken. 27 pounds. 29 inches. 79 on ¼ liter of oxygen. 68 on his own. Growth exceptional, saturations miserable. It was the same story we’ve been living off and on for the last year.

So the visit mostly centered on what’s next. And what’s next is 8-9 more months of oxygen as we wait for him to either take a serious turn south and require some unscheduled intervention or hold steady as tests are run and visits are made to a facility with a surgeon ready to tackle his case. While Primary Children’s touts a respected roster of cardiothoracic surgeons, they are still short a senior surgeon. Word is that the surgeons have met with the cardiologists on some of the more complicated cases such as McKay’s and they have asked that, for now, all Fontan operations complicated with dextrocardia be referred out.

Basically, being referred out means that we get to go shopping for a surgeon. When our card asked if we had preference for hospital, location or surgeon, I just said, “Yes, we prefer you find us the best surgeon.” I asked her to find someone who had done the Fontan in at least half a dozen dextrocardic kids with a good outcome. She said she thinks our best bet may be Children’s Hospital of Philadelphia (CHOP). But maybe Michigan. Or Stanford. Like I said, it’s time to shop.

For now, 2010 is shaping up a little something like this:

March 2010: sedated echocardiogram scheduled at Primary’s to do a full study of McKay’s heart and prepare a study to send out for review to candidate hospitals. (Apparently, many hospitals compete for complicated cases—that may play in our favor as far as getting access to senior surgeons.)

May/June 2010: Make initial visit to selected facility for work ups and pre-surgery heart cath.

July/August 2010: Fontan. Take our show on the road for anywhere between 2 weeks to who knows how long to get Mac re-plumbed and well enough to travel home again. The other monkeys may come for all or some of it depending on the location. I would love to make this some sort of “good” summer memory for them instead of “the summer when mom and dad left us.” I’m going to have to do some thinking on how to make that happen.

So that’s the latest. A lot of sort-of answers, with no concrete solutions. It’s a state of being that is still as maddening as it’s always been. In the meantime we’re just trying to keep Mac as happy and as untangled as possible. He is freight train on a short track and it’s a frustrating journey to watch. I spend most of my day chasing him around trying to give him enough space and slack to be himself. He’s a special little kiddo. I’m glad he’s mine. We will do right by him.

A Little Catching Up to Do...

2009-12-07T21:59:00.012-07:00

It's been a great while between posts, but not without good cause. We decided to make a quick post-Thanksgiving getaway to The Magic Kingdom. The entire park was frosted white for Christmas and we'd heard a "must see" for the kids this time of year. Couple that endorsement with the fact that McKay's favorite mouse makes his home at sea level--a fact that gives our heavy breather a fighting chance at a week without the tubes--and we packed up the family car for a good old-fashioned road trip.

After a good day-and-a-half in the car, with one overnight stop in Vegas (which Preston liked just a bit too much) we finally hit the coast and checked Mac's sats. We were ecstatic to see an easy 10-point bump simply from the change in scenery. He stayed at 82-85 for the entire week. It was an easy decision to drop the cords and hit the rides.

The trip started with a much begged-for stop at Legoland. This place is truly heaven on earth for 4-9 year old boys. The place was positively desolate and we walked onto nearly every ride in the park. The boys enjoyed running, pointing and yelling, "Mom, Dad, look! That's TOTALLY made out of Legos!" They must have said it 50 times that day.

McKay was not as into the rides as he was into playing with Grandma and Grandpa who tagged along for the fun and devouring the amazing apple fries the park has to offer.

Did you know shoulder rides are hysterically funny?

Mac has also mastered the art of peek-a-boo. It's absurdly cute.

We stayed until they turned the lights out in the park and then headed to find a fish dinner near the ocean. McKay was tired and cranky and not about to sit through dinner--that is until I walked my cherub about 25 yards to the boardwalk. We sat on the bench and listened to the waves roll in. He calmed instantly. It was a perfect end to the day.

Then it was on to Disney for three days of fun. Disney is always magical, but there is something about taking each of my boys for their first visits. I was glad the getting was good enough to take McKay this year. By 15 months old, both of my other boys had been to Disney twice, Hawaii and many other locations. (Ty redeemed his first frequent flyer ticket at just two years old.) To say McKay has put the breaks on a what was a frequently mobile lifestyle is an understatement. It's true we've found many adventures closer to home, but I felt a sort of strange sense of accomplishment at us finding a way to bring Mac and Mickey together.

And in return? McKay slept through meeting the big man! Oh well, his brothers smiled big enough and bright enough for all of us.

He did, however, get to meet Winnie the Pooh. It was a joyful event to behold.

Preston left every character encounter with his finger guns a blazin'. That little munchkin is personality plus.

All the pent up excitement that so often leads little boys straight into trouble, all the negotiations to try this ride or that, all the packing, unpacking and repacking everyday--it all adds up to one great trip, but not much of a vacation. And there is a difference. But this trip was an important one.

Matt and I shared pressure-free cuddle time with each of our little men. There were moments of just being together. No begging them to get dressed or undressed. No coaxing them into or out of the shower. No eat this now, pick that up, finish that homework. There were moments of pure together time. And that felt good.

As I watched McKay perfect some of his first shaky four, then five, and now six steps in a row in front of Cinderella's castle with Dad's steady hands and watchful eyes always upon him, I realized how big he is already becoming.

He was big enough to sit next to Grandma on the rides instead of on her lap. He was big enough to play, wrestle and otherwise enjoy his older brothers. He was opinionated, fascinated, and all around ran the show.

It was slightly more than depressing to drive nearer to home and watch the sat monitor tell us McKay, once again, needed some help. We'll check in with his cardiologist on Thursday for a more intense evaluation of how he's really doing and what's next. I'm close to nauseous for this appointment for some reason. We'll continue to pray and trust and hope for good news. And once again remind ourselves to take it one day at a time. Because the last few days have been pretty great.

All is Well

2009-11-24T10:45:00.005-07:00

It's been 10 days since our "episode" with Ty and I finally feel brave enough to say it out loud: "Everyone is healthy!"

As I held my breath this week (partly in fear of symptoms and partly because I sprayed a near continuous cloud of Lysol for three days straight) seeing who, if any of us, would get sick next, I felt something I have not felt in a long time--fear.

Fear for my children. Fear for an invisible enemy I could not stop. Fear for unknown outcomes and trials I'd rather not experience. My mind calculated and re-calculated contingency plans. If McKay showed ANY signs of a cough we would take him immediately to the hospital. If I got sick, I would go to a hotel. And on. And on. And on. And you know the result of all that constant worry? Lost time. Wasted energy. Worry is not preparation. Planning, preparing; that's different from worry. Worry leaves you feeling helpless. Hopeless. Unproductive. Distracted. Worry is the opposite of trust.

A scripture came to mind this morning as I continued to exhale the week that was. "And the angel said, 'Fear not, for I bring you good tidings of great joy.'" Fear not. It was the very first phrase the heaven's uttered when our Savior descended to mortality. Fear not. The Lord does not want us to be afraid. He wants us to trust. Trust in Him. Trust in each other. Trust in His plan.

And there is a plan. Most days I fall short of seeing what some of the intricate details of my plan have to do with the big picture of what He's making of me. But there are moments; moments when you feel the stars align; moments when people show up at your door or in your life at just the right time; moments when you get the tiniest glimpse of His love. And those are the moments you feel fearless. You feel surrounded by love and want nothing but to give it to others.

I have had more than my share of those moments. I am blessed. After all, it was one year ago today that I lived the most fearful night of my life. One year ago I was trying to stay present in what I worried may be my last day with a three-month old baby who would have his second open heart surgery tomorrow. One year ago, I was trying to trust and failing miserably. One year ago, I wondered if God would let me raise my little McKay just a bit longer. We prayed. We cried. We watched him sleep. And we woke to a morning where we had to trust in our strength to purposefully hand him over to another. We had to trust doctors and nurses and surgeons and God. And God, He is kind. Of course, all was well. McKay has exceeded every expectation of growth and health and quality of life in the past 12 months.

And this year? This year has been among the best, worst, hardest, most fulfilling, soul searching, growing times of my life.

And for that I am thankful.

Sure we're back on oxygen. Sure we're slip-sliding our way back into the operating room. And on the outside it may seem we have not come that far. But I can tell you, on the inside, nothing will ever be the same. We are forever changed. Changed by love. Changed by trust. Changed by answered prayers--and time. Changed by our perceptions of the time we're each given--it is precious and fleeting and not at all our own. And as awful as it was to feel fear again this week, it was good to be reminded of the contrast between fear and faith. They are opposites. They cannot exist in the same same heart. And I choose faith.

Just that fast

2009-11-15T13:51:00.008-07:00

Is it really possible for a healthy six-year old boy to go from rocking the first grade science fair, to being ambulanced to the hospital because he cannot breathe on his own in less than 12 hours? Yes, yes it is.

Ty took the ride every little boy dreams of and every mother has nightmares about Friday morning. After starting what seemed like a simple cough Wednesday, less than 48 hours later he was barely responding to us and struggling to breathe. After a good time at the school science fair Thursday night Ty came home, practiced his spelling words and was promptly tucked in bed. I gave him some cough medicine to ease what seemed like an innocent change-of-the-seasons tickle in his throat and off to bed we went. By 10 o'clock that night when Matt and I checked on him he was wheezing and spiking a 104-degree fever. We were worried. I called the 24-hour nurse hot line. What a joke.

"Make sure he washes his hands frequently," she read to me from a computer screen.

"Look, I'm telling you his symptoms and I need to know if I should take him to the hospital tonight or wait to see his pediatrician in the morning," I said.

"Give him some Motrin and call the doctor in the morning," she advised. So I did.

We arrived at the doc's around 10am. By 10:20 he was on oxygen support and undergoing a rapid strep and H1N1 test. They both came back positive. I was shocked. No. No way. We have done EVERYTHING short of crawling into a hole to prevent this moment. There was no way this could be happening. I could feel tears running down my face.

The doctors conferenced and decided to give him an Albuterol treatment right away to try to open up his lungs. They slipped the mask over Ty's nose and mouth and he began to cry.

"Am I going to die?,"he asked me. "I'm not ready to leave you."

Great. Another star on my forehead for overstressing the absolute necessity of the H1N1 vaccine he received 10 days prior by employing fear tactics. "Kids are dying from this flu," I told them. "You HAVE to get this shot." Yes, I know. I'm awesome.

"Of course not buddy," I said. "Do you want me to ask the doctors so they can explain it to you."

He nodded because moms lie, but doctors have to tell you the truth. It's the law.

His doctor patiently explained that we were not pioneers. If we were he would be in a bit of trouble. But since it's 2009 we have medicine and oxygen and all kinds of ways to help him get better quickly. I could tell he believed her, but he was still pretty upset.

"We're calling an ambulance for you," his doctor said.

"I have my car. I can take him," I told him.

"He needs an ambulance. He cannot take that ride without medical supervision."

Ughh. My stomach sank. This was bad.

When we got to Primary's they started more breathing treatments.

And by the end of our three days there, he was a pro.

Of course, a little room service never hurts in the healing process either. Too bad he didn't feel much like eating until it was near time to go.

It was easy to tell when he was feeling better. Suddenly, he seemed to have a home office set up. He was playing games online. Taking phone calls from friends. Requesting Popsicles from the nurses. Honestly, this was life and death just 36 hours ago? Yea for good drugs!

We packed up our little circus and made our way home with a shiny good-as-new Ty in tow about 11:00am Sunday with a note in hand that says he's ready for school tomorrow. Really? I think I may give him an extra day off for good measure.

The scary part now is the waiting. Who will show symptoms next? Maybe all of us, maybe none of us. The doctors couldn't say for sure. For now, we're making Ty wear a hospital mask when he's around his brothers and I'm boiling, make that washing, everything the child has even thought about touching in the last week.

I am here to tell you to PAY ATTENTION to your children. Little cough, slight fever, acting just a bit off? TAKE THEM IN. Do not wait. Who knows what kind of a mess we'd have on our hands if I'd let Ty go even a few more hours. I really cannot even think about it.

Even if your kids have had the first of their two H1N1 shots, they are not immune. Apparently the vaccine takes a good 10-14 days to provide any protection. Can you say false sense of security? I had for all intents and purposes, checked the H1N1 worry off my list. They think Ty contracted the virus about 8 days following the vaccine, but it is possible he was infected a full 7-10 days prior--making it possible he even caught the virus while getting the vaccine. Perhaps the CDC will rethink asking thousands of people to gather to receive a shot for a flu that is best prevented by avoiding large gatherings of people...!!

As for us, we'll roll with whatever is to come. I'm running a little low these days and can feel myself getting very close to the edge. The edge of what? I'm not sure. I think I'm too afraid to look down. Tonight I'll try to regroup. To collect a little cup of calm and hold on tightly.

But please, I must request that no one else tell me,"What have you done to deserve this?" "Why do bad things happen to good people?" Those are questions that make a lot of assumptions--about us and about the way God works. My God loves me. He sees me through these trials. He doesn't subject my children to life-threatening situations to punish me. Yes, I have many flaws--most of which I'm fully aware of and am working on the the best way I know how. I need the Lord. I am not afraid of Him. I do not blame Him. He has once again shown His mercy and once again reminded me of the need to simplify and focus on what matters most. Here's to hoping my soul will be brave enough to do what He asks.

My life is full. I send so much love to all of you for your prayers, support and thoughtful actions. It's an amazing feeling to have family and friends who might as well be blood to trust and rely on. We are blessed. xoxo.

Here to Stay

2009-11-06T10:28:00.013-07:00

Over the course of the Halloween weekend, the third musketeer went from this:

to this:

And the verdict is that he will stay tethered for the foreseeable future. After a weekend experimenting with extra oxygen support, McKay's cardiologist suspects more renegade collateral veins have sprung up around his heart and have been steadily causing his sats to dip over the last several weeks. Basically, the body is growing new veins to "help" his heart, but they are wreaking havoc on his ability to oxygenate his blood. Last time this happened they whisked Mac right in for a heart catheter and coiled off the vein. Not so this time. His docs feel it's too soon (the last procedure was just performed June 30, 2009) and if we pursue cathing and coiling each time, it's a dangerous dance he will most likely continue to repeat.

So for now the thought is to let those nasty collaterals have their day just so long as McKay is stable when he's on oxygen. It's been amazing over the past week to realize how blue he truly has been. He gets a good 8-10 percent bump in blood oxygenation with the support of the tanks which puts him between 80-82 percent--the same levels he was hitting in July following his cath. When we take the O2 off to bathe him or change his clothes or even just to give him a trial run at sustaining the 80 percent range on his own, he quickly takes on the now more noticeable bluish hue that we had thought normal just a week ago and rings in at a disappointing 70-72 percent.

Honestly, if McKay can survive being the little brother of these two crazies, I think he'll be good to go.

My main concern at this point is to get him feeling better. I want him to be able to play and climb the stairs and drive me crazy like every 14-month old should do. He does a good job for the most part, but it could be better. I am also extremely concerned with the long-term effects of such low saturations. What does it do to a rapidly developing brain to receive oxygen as though you live at the top of Everest every day? Disappointingly, no one has any good, long-term answers for me on that front.

If I'm being totally honest, I'm approaching panicked that the child has NO words at this point. Not momma. Not dada. Nothing. He occasionally babbles--but only occasionally. The strong, silent type? Maybe. But it's hard for me to separate what's normal baby stuff and what's a side effect of his funky physiology.

We're off to the pediatrician's now to get his ears checked once again. The child has battled chronic ear infections for the last three months. At 3:30 this morning he was as inconsolable as I've ever seen him. For McKay to be brought into mom and dad's bed, given a bottle and propped up to watch his favorite episode of the Little Einsteins only to continue wailing indicates a serious problem. Rocket can usually sprinkle sunshine all over his face no matter the situation. I'm anxious to see what's going on.

So that's that. Whaddya gonna do? It looks like we'll be corralling a tethered toddler until either his sats start to slide even further or we find ourselves a surgeon and McKay is deemed physically large enough to pursue the Fontan. There are several complications to his Fontan operation that make the cardiologists inclined to wait. Not the least of which is the fact that because of his dextrocardia (his heart lies inverted on the right side of his chest) the Fontan repair will have to be modified so that his heart doesn't actually sit on top of the new vessel. Sheesh--I'm so grateful there are smarter people than me in the universe who are willing to figure this thing out.

One great victory to report this week, however, thanks to some incredibly thoughtful neighbors and 45-minute drive to Provo, the boys are now all vaccinated against H1N1. I sure hope finding round two of the shot proves easier than round 1.

We've decided to get pretty vigilant about McKay's isolation considering all the bad junk floating around our neighborhood and workplaces. So if you're well and you want to play, please come over and give Mr. Mac a change of scenery. We may get him climbing the walls from sheer boredom by the end of the season.

Here's hoping for just a few more sunny, crisp autumn days. xoxo.

Boo, Boo, Boo

2009-10-30T21:27:00.010-06:00

Halloween (which is now a week instead of a day, in case you haven't heard) has been going very well.

Ty had his first piano recital which he did in costume (and which he rocked).

You got to love a six-year old with a deep bow.

We hosted our annual all Hallow's sugar cookie and soup night (which made us all a little more roll than rock, but these cookies are WORTH it).

My Three Musketeers made their debut and proved more shiny and sweet than even their chocolate-covered counterpart.

(I see a future in politics for this one.)

(And perhaps law enforcement for this one...)

But just when all seemed well, the phone rang. It was Friday at 5 o'clock. What could possibly go wrong? The results of McKay's labs from earlier this week were in and while everything seemed okay, the cardiologists today discussed possible solutions to dealing with McKay's ever lowering sats. The consensus? His cardiologist presented two options: 1) Do another heart catheter to explore the possibility of further collateral veins diverting blood from Mac's heart and lungs. Another surgical procedure. Another sedation. Ughh. 2) Put McKay back on oxygen and see if he can't boost his sats into the high 70 percent range and hold it there with the tubes until he's ready for the Fontan (think at least 8 months). Double ughh.

The decision? The tubes are back. At least for now. We'll see how his body responds to the oxygen therapy over the weekend and make further decisions regarding a second cath sometime next week.

The biggest casualty of the night (aside from our false sense of security and complacency) was a new pair of pajamas I cut through the foot so I could thread the tubes in and out of his sleeper. I am paranoid my little toss and turn will get tangled up in the night.

Truly, I just want him to feel better. Little boy blue has given us a couple of good scares in the past few weeks. Let me just say I will never buy the kid a purple shirt--I'm not a fan of the color on him.

Please, please, please Lord watch over my baby and his doctors.

Howling at the Moon

2009-10-22T08:57:00.006-06:00

These days people are obsessed with vampires. Supernatural beings that turn into blood-sucking villains when the sun goes down. Me? Not so much. I am far more frightened by a 14-month old that turns into a newborn at the stroke of midnight. He’s literally sucking the life out of me.

I realize that mothers complaining about how little their children sleep is as old as Adam and Eve. And I KNOW she complained. After all she had to mother the human race while camping—ughh. I’m not after your sympathy, just your advice. Crying it out is NOT working. He has an especially sad and violent cry he only uses at night and if we let him go too long I prefer not to turn on the light because I know how blue his plump little lips will look. Not only that, but he can go for well over an hour and then continue the rest and cry pattern until dawn when he somehow turns all babbles and smiles as he patiently waits for us to liberate him from his crib. What gives?

The only thing that gets McKay back to sleep is more milk. I usually ration it 3-4 ounces at a time because I know he’ll be up two or three hours later wanting more. Is it really possible that it takes such frequent feedings to satiate this 26-pound hunk of love? I’ve tried giving him full bottles, but he still wakes. Seriously—HELP!

Matt has stepped in lately and taken the first waking of the night and it has helped tremendously. Only now when Mac has a particularly bad night I am out of practice and more tired than ever. I’m kind of beyond trying to solve the problem and just trying to be grateful at 2am that I have a cherub to wake me at all. Have you had bad sleepers? Did they grow out of it?

You’d think with my third I’d be seasoned enough to figure this out, but McKay is taking me through a series of firsts all his own. Thanks for letting me vent. Things will look rosier once an acceptable hour for a nice cold Diet Coke arrives. I just can't bring myself to pop the top before 10am :).

Needed at Home

2009-10-21T09:53:00.002-06:00

I just wanted to share this remarkable young man with you. He is the son of a partner at Matt’s law firm. We spent some time this past year at Primary Children’s together. (Sadly, they were there far more than we were.) His father is an incredible man who constantly lifted us even when anyone would have excused him for being in a deep ditch of his own.

Life changes in an instant. For Chad, it was a check up to treat what seemed to be a simple sore shoulder that changed everything. Hug the kids in your life—the big ones and the little ones.

Read more about Chad here.

Not Me! Monday

2009-10-19T09:46:00.003-06:00

I’m a decent housekeeper. I’m not perfect, but respectable. On a scale of Martha Stewart to the hoarders on Oprah, I’m about an 8. (Excluding my bathroom.) It’s a good thing too, because McKay loves to put EVERYTHING he finds into his mouth.

McKay’s penchant for exotic snack selections has turned me into quite an expert at the finger sweep. I’ve fished out paper, toys, even a leaf that drifted down onto his high chair tray during a picnic this summer and was promptly sacrificed to his adventurous appetite. Remember the toy he managed to eat and nearly choked on when he was still a toothless six month old? He chews faster when he sees me coming toward him rubbing sanitizer into my hands because he knows his latest meal will soon be extracted. It’s both hilarious and scary.

That is why I did not COMPLETELY LOSE IT when we found McKay nibbling away on something horridly unacceptable at a friend’s vacation home recently.

We arrived late and as we went about the house turning on lights and getting the boys settled for bed, McKay was exploring his new surroundings with joyful abandon. After five hours in the car he had caught a second wind and was unstoppable.

Matt and I were mid-conversation when we turned to look at McKay and identify the unnatural crunching sound that was coming from his direction. Sure enough he had all five of his teeth hard at work on something yet to be discovered.

Matt told me he had this one and walked quickly over to Mac to pull out whatever toy he was nibbling on now. Only it wasn’t a toy.

“Are you kidding me? Are you kidding me?” Matt kept repeating.

I ran over to see if he needed some help.

“What is it this time?” I asked.

“You don’t want to know,” he said. “Let me just say that I’m pretty sure he still has a wing in there.”

“WHAT!?!” I shouted as I thrust my index finger into McKay’s mouth attempting to extract whatever was still in there.

“It was a cricket. A big, brown cricket,” Matt said.

I felt myself get nauseous.

“You mean the kind the seagulls ate?” I asked Matt. “You mean the kind people on Survivor refuse to touch until about day 32?”

McKay just beamed and continued to gnaw at whatever remnants were still embedded in his voluminous cheeks. Honestly.

Leave a known scavenger alone long enough to forage for disgusting things to eat? Not me! Feed my children bugs? Not me! Feel as though I might hurl every time I think of it. Yes. That last one is definitely me.

H1N1 Update

2009-10-16T15:39:00.007-06:00

I just got home from taking the kids for the H1N1 vaccine. Here's what you need to know:

1. The lines are LONG--Our regular peds office does not have any of the vaccine and I was advised to get McKay vaccinated asap so I had to visit the Health Dept. clinic--and so was EVERYONE else.

2. Once I arrived, nurses there advised against vaccinating my 4- and 6-year olds with the nasal spray because it contains the live version of the virus and could pose potential harm to McKay.

3. They would not approve me for the vaccine even though I am the mother of a high risk child. If the baby is older than 6 months, mom gets nothing until the next round of vaccine is released.

4. We get to do this all over again when the injectible form of the vaccine arrives in enough quantities for adults and older children. They told me pregnant women are the next priority. If there's any left after that, healthy adults can get in line.

5. The H1N1 vaccine is a two-part vaccine for children under 9 years of age, so McKay and brothers will have to go back 30 days after the original dose to complete the vaccination. This was news to me as all the reports I heard said it was a one shot deal. For adults, yes. For kids, I guess not.

If you are considering the vaccine for your family, I thought you might like to know!

Just a bit of a soapbox if you please...

2009-10-13T11:22:00.005-06:00

I am of the opinion lately that people spend far too much time worrying about what they (and those around them) do or do not deserve. What is or is not fair. Who should have and who should have not. Frankly, I’m sick of hearing about it.

I mean who really DESERVES anything? Do you deserve to be rich or sick or poor or well liked? Do you deserve to live in a certain neighborhood, drive a certain car, wear certain clothes? Is it fair that your business is successful while others hate their jobs? That you are able (or unable) to have all the children you want? That your marriage is happy or un-?

The truth is none of us have anything except by the grace of God. So I wonder why we don’t all start acting with a little grace ourselves.

I hear all of the chatter and bickering and round and round and round again about healthcare and I want to scream—Why can’t we all take care of each other? Isn’t that the most decent thing to do? Isn’t that the most Christian thing to do? But instead it becomes a question of who deserves coverage, who deserves quality healthcare, and fear over whether or not me allowing you access to my doctor means less healthcare for me.

This next part may be a little scary to hear, but it’s Halloween so I’m sure you’ll forgive me. It is my firm belief that we are all one job loss, one sick child, one unexpected accident away from being on the other side of this debate. And all the talk about the “others” will become a mouthful of humble pie as we begin to talk about “us.”

I don’t have all the answers. No one does. That’s why we all have to talk instead of shout; create solutions instead of roadblocks; remember the innocents that are caught in the middle of all the chaos-spewing pundits; realize we are all closer to needing, really depending on, a smart solution than any of us would like to admit.

For many of us it was our good fortune to be born into circumstances that have afforded an easy life where much is taken for granted. For others, the security that comes with having the most basic of needs met and the most human of fears allayed is nothing but a dream. It is our great challenge to realize we are all basically the same. To drop the pride and fear that separates us and dig in to do the right thing—for each other. I am convinced that one subtle shift in attitude could change the world and the way we live in it. Naïve? Maybe. Worth a shot? Absolutely.

26 miles, 26 miracles

2009-10-05T21:17:00.007-06:00

Post race with my marathon partner, Superman Shane.

Saturday was marathon day. It was the perfect day for a run. As the thousands of runners marched their favorite running shoes and dreams of finishing into the steady stream of pre-dawn school buses headed precisely 26.2 miles away, I could feel myself getting excited and calm all at once. All the preparation was finally over. It was time to see if it was enough.

Fortunately (make that miraculously) for me, Matt's cousin's husband (got that?) Shane, an accomplished marathoner and athlete agreed to run with me. We were never able to connect for a run prior to the race, but he greeted me with a wealth of positivity and good advice. He was optimistic and hopeful we could meet my new-found goal of finishing in 3:40, the time required to qualify for the Boston Marathon.

Just as a huge harvest moon settled behind the mountains and dawn began to debut, the race began. It was crowded and fast and wonderful. Shane and I shook our heads as we watched, ran past, and sped up to avoid a few characters in the crowd. The woman who kept dropping her camera and running back to get it--who runs a marathon with a camera? The breather who made us tired just listening to his forced air exchange. And many others that made people watching the main focus as the miles clipped by. There were hills. There were pace checks. But mostly we just ran.

When we hit the half way point about four minutes ahead of schedule I started to believe we were going to hit the mark. At mile 16 I started to choke up. Boston? Really? Yes, really. When the miles got harder and my muscles more fatigued, I recalled a list of 26 miracles I made prior to leaving for the race. "If I ever need a little extra inspiration, I'll remember the many miracles that have brought me and my little family to this point," I thought as I typed out the list last week. I titled the list 26 miles, 26 miracles. And I was glad I had that list to think about. I ran a mile for Dr. Hawkins. I ran miles for Dr. Lei and Dr. Pinto. I ran a mile for good neighbors. Another for best friends. I ran a mile for Matt and another after that because he's earned it. I ran a mile for Luna, Gracie, Avery, Daxton, Teagan, Jack and their moms. I ran miles for Ty and Preston and their brave, loving, amazing hearts. I ran a mile for the never-ending support of family. I ran a mile for Paul. I ran still more miles for many other non-coincidences, new relationships and old friends. And of course, a mile for McKay who makes everything complicated and simple all at once. My life is full.

Still somewhere between mile 24 and 25 my muscles started to give and doubt began to creep in. I walked for the first time. I cursed--just once. The voice of celebration in my head gave way to negotiation. Maybe next time, I thought. Under four hours is still okay. Your legs are jello. Just walk. That's when Shane looked at me and said, "You've got this, but you have to run." So we ran. I remember seeing the finish line and Shane grabbing my elbow and saying, "Sprint."

We finished. Stopped our watches and stared: 3:40. Matt greeted me and then ran to the official results tent and returned with a little white slip of paper. He looked worried. "What is the very last time you can have for Boston," he asked. "It's 3:40:59," I said. He smiled and handed me the paper: 3:40:22. We did it.

I screamed so loud I scared my four year old to tears. "WE'RE GOING TO BOSTON!!!!" It was an unbelievable feeling.

As I sit tonight, feet soaking, here's what I know: When you finish a marathon everyone wants to know your time; the official measure of your success. And, yes, that's important. But the real accomplishment of finishing a marathon is not in the 26.2 miles of aid stations, other runners, cheering crowds and balloon-filled finish lines of race day.

Marathons become milestones in your life because of the many, many, many mornings nothing but your will power pulls you out of a warm bed and into streets still dark and groggy with night.

Marathons are earned through a series of lonely runs, stashed Gatorade, and endless inner dialogue. It's just you and the seconds, minutes, hours ticking by on your watch. It's beautiful sunrises only you see. It's sleepless nights full of babies who don't understand the miles that must be logged. It's discovering how bad you want the goal, but not fully understanding why. It's the endless support of a spouse who knows you need this; you need to sweat and think and beat it out so you can come home and be better.

It's the miracle of an unexpected coach, mentor, friend who at the last minute agrees to run with you. Who in the last miles of the race tells you how close the finish line is, how you must keep running, how you are just too close to quit now. And the mornings, the miles, the hours spent preparing mean nothing in the end without that voice next to you telling you, "You can do this. Just keep running. You have to run. If you want it, you have to sprint." And so you do. And with just 37 seconds to spare, you make it.

We all run marathons. Some physical. Some emotional. Most of us finish without anyone noticing. And we rarely take time to heal, to rest, to refuel before the next race begins. My race was physical, but I think it was my most successful because it has been a year of watching others finish strong. Watching others help each other through the hard parts.

Please keep running all your many, varied races my friends. You inspire. You motivate. You make me want to do and be better. Keep. Moving. Forward. See you in Boston.

Latest Check Up

2009-09-27T14:41:00.007-06:00

We made the drive up the hill to Primary Children's this week. It was time once again to check in with McKay's cardiologist. After a quick weight (just shy of 26 pounds--honestly, can you believe that?) and height update (32 inches--90th percentile), our big guy got a quick EKG (the procedure you see in the pictures) and then faced his moment of truth with the pulse oximeter.

We have such a love-hate relationship with this obnoxious beeping wonder. We love it when the machine spits out good numbers that let us know Mac is receiving all the O2 he needs to keep all his systems running. We also marvel at how such a tiny little light on a such a chubby little toe rules many of the most critical decisions we will ever make. We hate it when the numbers are low. That means it's time to end the chit chat we're making in the moments before the numbers settle in for a good read and the mood in the room is about to change. Yes, we hate the pulse oximeter for its ability to provide a deep and silencing buzz kill.

This time around the reading was low again (68 -72) . Not good. He should be between 75-85. But then again it's low 90 percent of the time--always has been. I was sure his cardiologist was going to tell us to start up the oxygen. Instead, she wheeled herself over to the computer and started looking over McKay's history. As her mouse scrolled up and down his information she asked if we'd been spot checking him at home. I told her we had. Then she asked if we had any oxygen at home. I said we did. Then I raised my arm to the square and swore like a Boy Scout that our home monitor always read between 75 and 78. She turned back to the computer.

A few minutes later she said she wanted an Echo cardiogram done before she made any decisions. And just like that we were in the Echo room trying to get McKay to take a bottle watch a show and lie still why the tech spread goo and her magic Echo wand over his chest to take an inside look at his how his valves were functioning, specifically his aortic valve. To my great amazement McKay was the perfect patient. They took amazing pictures of his heart in all its funky glory. I really hope to get a video of it someday. It is hard to wrap your brain around how a heart that is shaped like that functions at all. The body is indeed a wonder.

The best news of the day came when McKay's cardiologist told us that the echo looked great, practically perfect in fact. All systems are still as tight and strong as we pray they will stay. Even better, the echo convinced her that Mac could stay away from the tubes for now. His low saturations are still a bit of a mystery, but the news earned a deep exhale from us.

McKay is so active right now, huffing and puffing his way around his kingdom. He gets winded quickly and has a tendency to rest his tired little noggin on the carpet for a few moments now and again, but once he feels recharged there is absolutely no stopping him. He is a one-man wrecking machine without time or patience for the tubes that would prove something akin to tying a lasso around his head. I seriously don't know how other moms do the oxygen thing once their little ones are walking and crawling. My hat is off to you for all the patience and worry that must come with that necessary evil. I know we will get there again, but for now, we're tube free.

We made several promises to check his sats regularly, to come back in if his lips get any bluer or his naps any longer. Yes, yes, and yes. I guess this is all part of being in waiting mode. Waiting for the next step. Waiting for the hospital to find another senior surgeon. Waiting to see if we will seek experience and know-how out of state. Waiting to make it through another season of sequestering Mr. Mac away from the many, violent germs that have just begun to make their debut. Waiting, waiting , waiting for answers.

We have decided that McKay will get the H1N1 shot this year. We had been on the fence about it until our card said to get the shot. Apparently even if the kids can beat the flu, the lasting respiratory effects are severe (and could prove a fatal complication for little sweethearts). She says the outbreak will be fast and widespread and encourages getting the vaccine as soon as it's available. Decision made.

As long as we're talking about shots, Mac's next (and hopefully last) season of Synagis shots will begin in a few weeks. The vaccine is designed to prevent RSV. The bummer of this miracle drug is that it only has a 30-day life in the body. So once a month for the next five months McKay will receive his dose of this nasty blessing. The shot is a thick, painful one that takes longer to give every time the dose is increased. (I've honestly never seen a shot given so slowly. It makes me tear up every time I help the nurse hold his chubby little thighs down.) Mac's dose usually goes up monthly as it is tied to his weight. The cost of the shot is also based on the amount of the vaccine required. Last year we watched the cost of each shot increase from about $1,300 all the way up to over $2,500 for his last shot of the season. Oh well. We'd rather meet our deductible preventing illness than in the hospital fighting it!

So much is swirling in my head about the next 12 months of this journey and all that it will bring. Yes, we are anxious. But we are so blessed to still be on the journey. There are many who would do anything to have my worries. Instead they only had their babies for a few hours, or days or months, or --heaven forbid--years, before the Lord called their courageous little angels home. I think that thought and say a pray of thanks to accompany it every day.

I look at examples like Paul Cardall; a miracle of a man who says, at 36 years old, that at just a few weeks post heart transplant he has never felt more healthy in his life. The truth of that statement makes me want to sing for him and weep for these little warriors. How do they feel every day? Would you and I even get out of bed if we felt their "normal"? What is it like to be them? Will they ever know the difference? McKay's smiles tell me that there is much of life worth living no matter the vessel God has asked you sail in this life. And sometimes when we catch each other's eyes in the quiet moments of the day, I know he is grateful his father and I made the decision to let him sail. No matter the length, no matter the circumstances; life is a gift.

What if?

2009-09-21T21:10:00.005-06:00

Two weeks between posts. Ughh. I know--it's less dry spell, more drought. I have started no less than half a dozen posts on various notepads I keep around the house. I write them as I wash the dishes, rock my babe to sleep, sort the laundry. And although my scribbled notes assure my thoughts don't vanish, they hardly do much to share them either. In an attempt to get this derailed blog permanently back on track, I've decided to revisit my here, there, and everywhere notes and put them in ink (so to speak) here in this catchall cyber space of mine. Let's start with this one.
---------------

I'm training for a marathon--did I already tell you that? It will be my second. My first foray into the world of absurd tests of endurance was the 2007 Salt Lake Marathon. The race may have come too early in my running career--just 10 months after I laced up a pair of running shoes for the first time--or I may have just underestimated the time it took me to cover the distance while training. Personally, I think my downfall was a wicked sinus infection that had my face feeling more like the morning after of a fist fight than sickness, but that first marathon did not go as planned.

It wasn't that my time was particularly bad. I think it was around 4 hours and 26 minutes. It wasn't even that it required medical attention and mild sedation to fix my mangled feet following the run. It was the simple fact that the race was just not as fun as I'd hoped it would be.

I remember crossing the finish line feeling relieved, but not satisfied. I thought, "Huh, I think I'm going to have to try that again."

Two years and one more child later, I'm ready to do it again. And somehow, this time already feels more fun.

The feelings of fun might be the fact that the St. George Marathon boasts about 9,000 more runners than my previous 26.2. I love running with/by/along side people. I think about their stories, their clothes, their reasons for devoting hours and hours and hours to the practice, discipline and sport of running. I think about their bodies--shaped, molded, sculpted by running. If I'm being honest, I think about their thighs and whether or not mine should be moving faster than theirs. It's semi competitive, semi voyeuristic, semi crisis-of-self-confidence meets motivation-by-any-means-necessary. Sometimes, you've simply got to draw the strength from wherever you can find it in the moment.

I love the crowds of family that come to support other runners. I love their clever signs, their adoring children.

I love the aid stations set up every few miles. Their carefully filled cups of water and Gatorade all in a row. I love the cheerful race volunteers, the sound of the paper cups crashing to the pavement to become part of the confetti that lines the race route for yards after each aid station.

Yes--I run to be part of the party.

I spent almost all of last week in Boston for a conference. It was a busy week that took nearly as much coordination to keep my family running in my absence as the conference itself. (Note to self--five nights away from my babies is too long right now. Oh, how I missed their angel soft cheeks and smelly little mitts.) Although I was in the city for work, I woke early for a little running pleasure.

The mornings were beautiful as I wound my way through the streets of this most historic city. First up from the harbor to Boston Commons, through Beacon Hill and then along the Charles River. The route had a thriving community of runners, each keeping their own pace alongside the teams of rowers methodically urging their vessels forward in the river beside us. It was peaceful, inspiring.

I say inspiring because in order to qualify for the great race that is the Boston Marathon, I will need to finish my jaunt in St. George about 15-20 minutes faster than my practice runs translate into my projected finishing time. (In running, 15 minutes is a LOT of time to shave off your pace.) But my little run in Boston started me wondering, "What if?"

What if I ran each mile just a bit faster? What if I pushed my body just a little harder? What if I could shave 46 minutes off of my first marathon time and claim the 3:40 time required for Boston? What if?

What if I could do it all just a little over a year post-baby, post-surgeries, post-new outlook on everything in my life and all in a still sleep deprived state? What if?

Of course it's okay (really, really okay) if I don't qualify to join the Boston race and its throng of 25,000 pavement pounders. First, I don't know if my body could handle the pace without some serious post-race repercussions. Second, it's been a long training season and quite frankly I'm just ready for the race to be here and done.

That said, one cool, gray morning running along the Charles River may have been the only taste this runner needs to move my well-soled feet just a bit quicker. After all, the faster you run, the faster you're done, right? Honestly, if this year has taught me anything it's taught me to not be afraid to dream and plan and try. Here's to daring to entertain my what if's. What are yours?

Not Me! Monday: A Sudden Departure

2009-09-07T11:53:00.006-06:00

I am home and able to post on this glorious Labor Day because I did not leave our family vacation a day early. After wrestling McKay for two sleepless nights in the family cabin near Flaming Gorge, I did not cry uncle and through exhausted eyes announce that the baby and I were driving home. Tonight. Not me!

Nevermind it was a day early. Nevermind that my decision to pursue sleep in softer sheets meant Matt would have to accommodate the wishes of our two eldest who would never leave the land of rocks and sticks a minute earlier than originally promised. Nevermind that it meant Matt would sit in between our two blabber mouths and their car seats in the sort-of-a-backseat of his dad's pickup for the 2 1/2 hour ride home. (Yes. He is a SAINT.) Yes, nevermind indeed because I need more than three hours of highly interrupted sleep to function, let alone manage perky.

No, I would never assume my in-laws could forgive such a sudden departure. Except, of course, if I (and McKay's red eyeballs and constant whine) announced our plans so matter-of-factly that no discussion was required. Really, McKay is cute, but after a solid 36 hours of off but mostly on crying, they too found the strength to wave bye-bye.

I would regret the decision a little more had we not had such an amazing night of sleep last night and were McKay not sleeping so soundly through his morning nap. ~Sigh~ Sometimes exiting stage left is all one can do to preserve a little sanity.

Lost and Found

2009-09-02T21:18:00.009-06:00

Sometime in mid-August I put this journal of a blog down and ran outside to play. Although I found it once to commemorate the culmination of McKay’s rookie season, that little (but important) post was the beginning and the end of it. I think—make that I know—that it wasn’t so much that I couldn’t find my blog as I was wrapped up in celebrating and adjusting and transitioning through a glorious season that kept us out of doors and away from keyboards.

This summer has been a season of fondant-covered firsts,

and parties overflowing with people we could never be without.

A season of painted faces,

and snow cone tongues stained the color of summer bliss.

A season of brothers and bounce houses.

A season of special new cousins born on the very day so many angels were gathered around to sing Happy Birthday to our cherub that we believe
one tumbled down to stay.

Welcome little Izaac Shane. We are honored you would make your debut on McKay’s first birthday and look forward to the many more you will share in the years and years and years to come.

A season of school days where angels just a bit older and leaner are ready far too soon to spend the day away from mom. Where bells and lunch and recess and the color of your pencil box makes the world go round.

A season of unrestrained sunshine and answered prayers.

More adventures to come...

One Year Ago

2009-08-20T00:35:00.007-06:00

One year ago today--

They tell me you will be blue.
They tell me I cannot hold you.
They tell me to sign here, consent to that, make the right choice.
They tell me tomorrow will be the day—
you are not yet 48 hours old.
They tell me you are strong.
They tell me the procedure was successful.
They tell me you are not yet ready to breathe on your own;
we will try again tomorrow.
They tell me to be patient.
They tell me we could be here two weeks or two months;
it’s up to you.
They tell me it’s not likely you will eat or learn to suck.
They tell me feeding tubes are not so bad.
They tell me you will be small.

But you hear none of it.
On day 6 you breathe on your own.
On day 8 you eat on your first try.
On day 11 we go home.
You grow and grow and grow.
So big and so fast that we are back again for help sooner than we expected.
You tolerate the tiny tubes that hug your cheeks.
I cry because I cannot kiss them.
I cry because they bleed when I change the stickers.
I cry because you're cute anyway.
We go back to the hospital.

It’s harder this time.
You are bigger, stronger, I know you now.
And I am attached. Forever.
I ache. I trust. We walk away.
Every hour an update.
He is on the table. He is on bypass.
They only had to stop his heart for 7 minutes.
All is well.
Next time will be trickier, the surgeon tells us.
But today went well.
You breathe.
You eat.
You heal.
We are home within the week.
Christmas.
No church. No crowds. No parties.
Shots. Lots of shots.
Lots of important, expensive shots.
Synagis. Aspirin. Lasix. Aldactone.
We speak a new language.

You grow.
And grow and grow.
Your doctors laugh at your chubby legs, your dimpled smile.
We are blessed. We are grateful.
They worry you cannot hear.
We get all the tests.
You can hear.
We cheer and cry and ache for families with babies not like you.
It is hard to watch friends mourn.
You push forward.

Experts and friends say it’s time for you to move.
To stretch, to reach, to crawl.
You need help.
Six weeks later you are unstoppable.

Your surgeon, our hero, is mortal.
Other plans must be made.
Still unresolved.
Purple feet return. Purple lips.
An unplanned appointment.
An unexpected procedure.
A few more weeks of oxygen.
Then 80s. 80s. 80s. WOW.

No more tubes. No more sitting.
You move, move, move.
You are into everything.
Stairs. Cupboards. Toys.
You eat everything.
Foccacia. Hummus. Ice Cream.
You LOVE ice cream.

You are full of smiles.
You adore your brothers and they cannot get enough of your laughter.
You are a part of us today, tomorrow.
You do not listen to the odds; you beat them.
You challenge my experience; I grow.
You fill me with a love that overflows and tells me
I have known you for far longer than this one year.

Happy First Birthday Mac-e-Moo. We love you!

Not Me! Monday

2009-08-10T21:27:00.002-06:00

I am not a napkin. My kids are constantly wiping their faces-hands-feet all over my sleeve-leg-arm. Really, I'm not a napkin. Knock it off.

Matt has the boys so trained that they actually go and wash their faces and hands whether they need to or not at the mere sight of him in a suit. So why, then, do I have to use a mirror to check the back of my shoulders for sludge before leaving the house? Oh yeah, because I'm a human napkin.

I know everyone counsels that one day I will miss the fingerprints on the tables. The windows. The walls. The mirrors. The television. The door jams. The inside of the car windows. The refrigerator. And on and on and on. But today I am disenchanted with my messy universe. The harder I try, the more determined to grime things up they become.

So I did not at one point this week stare down my six (nearly seven and old enough to know better) with such disappointment that it brought him to near tears over his EVERYWHERE fingerprints. Not me! Not when seconds--and I'm not exaggerating even a little bit--seconds after I finished a perfect streak free cleaning of the large sliding door off our kitchen he ran his two sticky mitts full force into the glass.

And I did not let the heat of my disbelief fly his way when just minutes after our firm but controlled discussion of why it was inconsiderate to have messed up the glass while I was cleaning it did he follow me upstairs and blatantly spray a water bottle directly at the mirror in my master bath. REALLY? On your bed while I cool down just a bit if you please. No, not me!

I realize this is small stuff folks, but sometimes the small stuff is all I get done in a day. Capiche? Sometimes having a clean mirror to look at the darkening circles under my eyes or a crystal clear view of the yard work that awaits is as far as I get. So I'm taking it upon myself to focus on the small things to teach my kids the big things--like noticing the hard work of others and realizing that the house feels better when its just a bit cleaner. I try to stay in the big picture and mostly succeed, but this week I have to rationalize that the only life lesson I did not teach my kids was impatience and pettiness. Not me! Sheesh. I'm glad it's next week already.

Into Thin Air

2009-08-06T10:51:00.014-06:00

On our latest hike to the Mount Timpanogos Cave

Some might consider us decently intelligent people. (At least we'd like to think there are a few out there of that opinion.) Of course, the story I'm about to tell will cure any and all who suffer from such misguided thinking.

We have been absolutely thrilled to have McKay footloose and tube free the past few weeks. So giddy in fact that we've celebrated our freedom by taking our buddy into the great outdoors on a regular basis. I recently shared the pictures and recap of our trip to Bryce Canyon and giggled at how silly McKay was to fall asleep as we summitted a canyon in our ATV, and took a snooze while we traversed the beauty of Bryce's amphitheater. "He's such a good boy, an easy traveler," I thought. What an idiot.

Last Friday we visited with McKay's cardiologist for the official heart cath after party and check up. All was well. McKay's saturations hung between 76-80. Fine for now according to our doc. In fact, his heart is so solid today, you can barely hear any murmur. And to be honest, the doc said, if another physician wasn't aware of McKay's condition they would probably hear nothing wrong with his heart. Unbelievable really.

"But he will still need oxygen if you choose to travel. Airplanes are pressurized to simulate air at about 9,000 feet and I just don't know how McKay would respond to air that thin," she said.

"Uh, I do," I thought as I quickly did the math.

Home: 4,330 feet= Happy McKay

Cottonwood ATV Trail Summit: 11,000 feet=Sleepy McKay

Bryce Canyon: 8,000-9,000 feet=Sleepy McKay

Mount Timpanogos 11,749 feet=Sleepy McKay

Notice the pattern? And no, unfortunately I don't think the hat has anything to do with it.

Whether or not these were honest-to-goodness naps or thin-air induced drowsiness, we'll probably never know. But needless to say I was sick at the thought that we may have put him in danger. Sitting in the exam room, exchanging sheepish glances with Matt, we finally confessed.

"Well..." said the doc in a completely diplomatic way. "It's probably best not spend an extended period of time at those elevations without oxygen support."

Point taken. Lesson learned. Guilt permanent.

We hope you enjoyed the trip boys. The next hike will be a little closer to sea level and level-headed thinking.

***POST SCRIPT: After reading this post Matt thought it important I note that McKay was pink and arousable throughout our experiences and his periods of sleep were not unusually long. He was not at any time passed out or unconscious. We were at least smart enough to check that. :).***

Mr. Mischief

2009-08-03T22:51:00.007-06:00

What does mischief look like?

It peeks around the corner with the face of an angel...

It teases with smiles and laughter...

Mischief occasionally plays by the rules.

Just to throw you off.

Because what mischief really wants is to be where it should not,

To play in places more interesting than the rules dictate,

To explore closed cupboards, forbidden drawers, and weave its dangerous ways into your heart...

Just so you let your guard down long enough that it can start all over again.

I love Mischief.

Not Me! Monday

2009-07-27T16:17:00.004-06:00

Toys, toys EVERYWHERE and not a spot too clean. That's how I'm feeling these days. Like I'm slowly being engulfed in a quicksand of plastic. So much so that my normally infinitely patient self (ha!), the me who never loses her temper with her always-a-lego-in-hand children, may have at one point in the last week lost said temper with said plastic and said some choice words in the process.

My out-of-body (read: going out of my mind) Not me! confrontation with the steadily multiplying piles of crap, I mean, supply of fun of the 250-pieces or more, lots of assembly required variety came to a crescendo this weekend. It came as I did not tell my four year old for the fifth time to get his sh*# off the stairs before I threw it away. Not me!

"What ship, mom? My ship is already in my room," he replied.

Ughhh. Laugh to myself. Thank God for innocence and forgiveness and moments like these.

"What I meant to say is please sail all these toys like a ship up to your room before I have to throw them away."

"Okay, mom."

Lose my temper? Swear like a sailor straight into the innocent ears of my sweet boys? Get schooled in the moment by a child infinitely wiser than I am? No, not me!

So. Much. Fun.

2009-07-23T14:32:00.018-06:00

Summer is heating up and we're doing our best to take advantage of every tube-free minute we've been given. Just 48 hours after we waved good-bye to those lousy green tanks we had the family car packed and on the road. We were seeking crisper, cleaner air and a change of scenery in a few of Utah's many giant-sized playgrounds.

Our first stop was the sleepy little town of Marysvale. It's a back country, ATV-lovers paradise. All we knew is that it was about three-quarters of the distance to Bryce Canyon and featured several mom-and-pop-type outcroppings of log cabins where the boys could play wild west for the night. It was hometown, friendly and is now permanently on the list of things to do in years to come.

In fact, we so enjoyed the look of the mountains that surrounded our outpost that we decided to rent a family-size ATV and head for the hills. (Yes--we were getting in touch with our inner redneck and loving it!) We saw an abandoned mine town. A waterfall. More butterflies than you could count. And breathtaking views in every direction.

The boys donned crash helmets and McKay didn't know what to make of the open air ride. He licked the air, he laughed, and then he promptly succumbed to the loud, but steady hum of the engine--and napped! Too funny.

Covered in dirt and smiles from head to toe, we piled back into our favorite people mover and headed to our destination: Bryce Canyon.

This place never disappoints. It is stunning. Every time. When we started planning this trip a couple of months ago it began with a race. I had no idea the Canyon offered an annual half marathon. After learning that one of my favorite destinations played host to one of my favorite pastimes--I had to be part of it. The only hang up was whether or not we were brave enough to take on three little bodies sleeping in the same hotel room. We were concerned with finding a hotel that wouldn't make us crawl at the thought of McKay on its carpets. It just so happened that a new hotel near the Park entrance was slated to open its doors shortly before the race. We made our reservations and relished in the new paint smell and fresh furniture upon our arrival. PERFECT.

The hotel was gorgeous. The race incredible. And the hiking afterward, a trip highlight. (Although I would not recommend racing and hiking steep terrain within hours of each other and then sitting still in the car for the five hour ride home--Can you spell s-o-r-e? Ouch!)

We bought a great backpack for hauling our little butterball up and down Bryce's famed amphitheater. He loved it. And once again, took Matt's steady pace and the peaceful scenery as an opportune time to catch a few zzzz's. The site of a sleeping baby seemed to draw more attention from the multitude of European tourists there than the canyon itself. Do people not take babies on vacation in other countries? Whatever.

The boys were troopers and made their way through three miles of strenuous and steep trail like champs. It was HOT. Honestly, they were impressive. I am so lucky to have this crew.

In any event, we're home and showered and ready to plan our next adventure. I've been looked at a little sideways from some for being so "normal" in our routine with McKay. The store. Vacations. Church. I've thought a lot about this comment, this criticism. My only answer is this--how else should we be? This is our normal. Everything we've been through in the past year was designed to get us here. Here to playing and wrestling with his brothers. Here to road trips. Here to hiking and enjoying the outdoors. Here to swimming and swinging and the zoo. Here to living.

No matter what's ahead, no matter how much time God is willing to give us with McKay (we're voting for a ridiculously long lifetime thank you very much), we have been trusted to assure he lives--and we take that assignment seriously. Not just the breathing in and out part, but the really living and enjoying and laughing and experiencing parts. Because that's the stuff that makes life worth living, the stuff that energizes our souls and makes us stronger. And praise be that right now he is able and healthy enough to do it all. Besides, all it takes is one look at him--without the tanks and tubes--and you must admit, you would really never know. So shhh, it's our little secret and we'll agree to let the kid be a kid.

It worked!!

2009-07-14T11:19:00.004-06:00

We just raced home from a quick stop in to the cardiologist and it seems McKay's carefully-placed new coil is doing the trick. He posted oxygen saturation readings between 78 and 82 this morning...YAHOO!! I couldn't help but whoop and holler right in the exam room. Those numbers are as good as McKay has ever recorded.

That means no more tubes, cords, or tanks for now. Hallelujah. Praise be. Can I get an Amen?! We are truly so relieved, grateful and giddy we just had to share the good news!

Thank you so much for all the prayers. As I type I am watching McKay crawl as fast as he can straight for me--a feat that normally would have been circumvented midway by his leash of a cord. No more! It's a joy to watch him be free--a joy that is simple, pure and soon to become a true challenge as we try to save him from his new daredevil self. We say: Bring it on! xoxo.

Not Me! Monday

2009-07-12T21:24:00.010-06:00

Outsourcing: (verb) to obtain goods or services from an outside source. An act that signals an important state of self-awareness and surrender; often a means of survival for mothers of small children.

I am a very patient person. Start a project without reading the instructions first? Abandon an over-ambitious endeavor (or 12) midstream so I can store it and trip over it and feel guilty about it for years to come? Not me! I set aside infinite amounts of time to craft, tinker and otherwise encourage my creative juices. I would never cry uncle and begin to let go of the control I so firmly enjoy in the name of convenience. Not me!

So when I looked at my calendar on a particularly packed Saturday and realized I had a 16-mile training run, Matt's work picnic, the Intermountain Healing Hearts (IHH) family dinner, and a REAL soccer game all scheduled for the same day, I did not panic. Anyone can plan ahead for days like that, right? I most certainly did not pick up the phone and call the world's most gifted cake maker (my infinitely creative and talented sister-in-law) to have her create this for my entry into the heart-shaped dessert contest at the IHH picnic. Not me!

I also did not feel the least little bit guilty when my entry was awarded "Most Creative" and I collected gift certificates to dinner and the movies for all my thoughtfulness and effort. Not me! Afterall, the rules said to bring a heart shaped dessert--there was no distinction or preference expressly mentioned for desserts of either the homemade vs. commissioned variety. (But it does feel good to confess the commissioned nature of my entry!)

I will most certainly be able to look at every member of this unbelievably special group of families in the eyes again and without batting an eye say, "Yes, that's me. The one who brought the fabulous heart cake. You know, the one that won for Most Creative." Not me!

I think they'll forgive me. (Most of them anyway.) Afterall, outsourcing the cake was an act of survival and sanity that weekend--something they all know far too much about. So to all our wonderful heart friends, just remember that when you see a fabulous cake at the picnic next year, you'll know it was definitely Not me!

Summertime

2009-07-08T22:12:00.010-06:00

Call us fair weather bloggers if you must, but life has changed just a bit in the past week and that little change has disrupted the regular flow of our daily routine. What is the change you ask? Mr. Mac is on the move.

Crawling. Reaching. Falling. And, after a few kisses (from my sister's dog and other cheering onlookers) and someone to set him upright, he starts the process over and over and over again. Hooray for Physical Therapy!

He is determined, strong and oh-so-very-proud of himself. McKay's new mobile universe has taken over the house and a great deal of my free time. Prized toys are being placed just a bit higher up on the shelf, doors are being closed in an effort to keep the little bug from bugging too much, and cries of "Mo-om! He's touching my stuff" rule the day. LOVE it!

In other news, we had an excellent 4th of July holiday. We did it all. The rodeo, parade, fireworks, parties and more. The kids were so into everything--asking about the rules of the rodeo events, waving to the parade princesses, giggling their way through the firework show, it made for a seriously fun weekend. Here are some of the highlights:

Preston collected an nauseatingly-huge stash of asphalt-warmed taffy at the parade (and grass and rocks and dirt--When else is it okay, even encouraged, to forage for food on the street??).

While Ty took his role in the parade as Grandpa's taffy-throwing wing man very seriously.

Practically punch-drunk with sleeplessness and sugar, the boys had as much fun waiting for the fireworks to start as they did watching the show. Ty squished poor Grandma Di until she giggled like a third grader.

McKay had fashion on his mind as he wore almost every piece of red, white and blue clothing in his closet at once. We especially loved the way his new patriotic Baby Legs fit right under the plaid shorts. I know--stellar.

Life is good. The boys are busy with all the things that make summer summer and childhood childhood. Swimming lessons. Summer camps. The zoo. Time is passing far too quickly and I get panicked every time they outgrow another article of clothing that this special time is slipping away from us.

Truly the most rewarding part of all the the work and busyness that is our life these days is watching our sons grow closer to each other. I want more than anything to teach them to rely on each other, feel grateful for each other, seek out their brothers' company and establish each other as their best friends for the decades to come. That is what motivates us to provide the experiences that create together time. There are not a lot of frills or fancy in those moments this year-- no exotic locations, no plane trips, or big souvenirs. This year it's mostly just the "together" that makes the destination great. And yet somehow I think this might be one of our most memorable summers ever. It seems just a bit sunnier this year. Who knew?

Cath Report #2

2009-06-30T20:27:00.008-06:00

A few pre-procedure bubbles while we wait to talk to the docs.
Fact: Only babies can make hospital gowns look this cute.

The updates have been few and far between today--I wish I could say I'm sorry, but it would be a lie. We were so busy getting Mac feeling like himself again today and listening to our discharge orders--that's right, we're home!--who had time to post?

The procedure took about two hours and we met with the doc afterward to see some amazing inside pics of our little brave heart. The good news is that everything looked just about perfect--the graft into his pulmonary artery has held its shape, there are no problems with pressures, his aorta or anything that would indicate major problems to come. The only thing the doc could find that might be causing McKay to have oxygen saturations lower than they would like is one large collateral vein.

You can see the nasty renegade in the picture below. The picture is of McKay's chest. The dark line that descends from the top of the picture is the cath. You can follow it until it snakes into a thicker, larger mass--that's the collateral vein that was diverting blood from McKay's lungs. (The twist-tie looking lassos in the middle are the ties that hold his little sternum together and are the result of a previous surgery.)

Okay, are you ready for this? Here is what the same chest shot looks like after they insert a tiny metal coil into the collateral vein. They literally just stuff the piece of metal (which looks entirely like it belongs in a Cup of Soup to me) into the vein until they create sufficient blockage to obstruct flow. Over the next few weeks and months, the metal then attracts the blood to clot around it and form a dam which effectively blocks and shuts down the vessel. Here's the coil:

I know, it makes my skin crawl a little, too. But you have to admit it's pretty amazing medicine.

You know what's even more amazing? A 10-month old who sat before me today with pressure bandages on his neck and thigh, two IVs in his left hand and foot, a cluster of blood blisters where they carelessly removed a taped-down drape cloth after the procedure, whose one free hand still felt as soft as silk and who tried and succeeded in mustering a smile of encouragement for me.

We have to wait a while to see if today's new hardware will be the answer to finding rosier days for Mr. McKay. About a month actually. That's how long it will take the body to react to the coil and reroute blood flow--we hope--through his pulmonary artery and into his lungs this time.

So we wait. And hope. And pray. And leave it up to God and the tiny tank of a miracle we see in our Mac. He is the very epitome of resilience.

Cath Report #1

2009-06-30T09:33:00.001-06:00

As if you need the blow by blow, but I'm nervous, exhausted, and fidgety so you're getting an update.

McKay decided to pull an all nighter, refusing to go back to sleep after a 3am bottle. He was giddy and playful, insisting to get out of his room. The entire act would have been rather endearing had it not been the middle of the night. Alas, he won out and spent the wee hours of the morning in between Matt and me smiling at his favorite Little Einsteins while we tried to catch a bit of sleep. Little stinker. :)

We arrived bright and early this morning to check in only to find out they were redrawing our paperwork because the doctor preforming the procedure had been changed. Ummm, excuse me? Apparently the doc we had requested, the doc we had been assured through two previous phone calls from the hospital would be performing the cath on McKay changed his schedule. What to do? If we objected, we could cancel the procedure and reschedule--for over a month out because the cath lab schedule is jammed until then, or we could quickly adjust to the change in plans and go forward.

After talking with the new doc and flat out asking him about the change and why it was made, we felt just a bit better. He detailed the methodology of McKay's cath telling us that his current anatomy requires them to perform the cath through incisions in not only his leg, but his neck as well. Right now McKay just doesn't have the highways necessary to give access to all the locations they need to see during the procedure. So a double cath it is. Poor thing.

We were told they will be looking for anything "that could be making McKay so blue, so early." Right now they are about half way through the three-hour procedure and we are holding tight to the beeper that will let us know when they are ready to let us see him again.

More news soon...

Butterflies?

2009-06-29T21:40:00.008-06:00

It's not fair to describe the nervousness I'm cultivating in the pit of my stomach tonight as butterflies. I had butterflies on my wedding day. Driving to the hospital to have each of my children. I still get them on Christmas Eve. No. This is definitely not butterflies. Moths, perhaps.

Why the nausea? McKay will spend the day(and possibly night) at the hospital tomorrow having his first heart cath. The cath procedure involves inserting a thin, flexible tube (catheter) into the femoral artery high up inside McKay's chubby little thigh. The catheter is guided up the vein toward the heart. The cardiologist uses X-rays, called fluoroscopy, to help visualize and guide the movement of the catheter to the desired locations within the blood vessels and chambers of the heart. While inside the heart, several things may be done to help evaluate the heart structures, as well as the pattern of blood flow inside the heart and nearby blood vessels, including:

Drawing blood samples from each chamber and each blood vessel, to measure oxygen content.

Making blood pressure measurements inside each chamber and each blood vessel.

Injecting a contrast (dye) into the catheter and recording the images as it flows through the heart.The moving pictures are saved, enabling the cardiologist to review the data after the procedure.

Inserting tiny coils to block blood flow from spontaneous and unwanted collateral veins which may have developed around the heart.

I know the procedure seems a small thing in light of McKay's history, but for some reason the thought of how they perform caths just gets to me. Seriously, who thinks up this stuff? I'm not sure, but I am glad they contributed their genius to developing the mind-bending, life-saving treatments that will help to keep Mac in the clear.

Please say a little prayer for our McKay and for his doctors that all will go as planned. Truth be told, we're hoping for a day full of thoroughly boring news!

The Sunny Season

2009-06-25T16:03:00.006-06:00

Ahhh Summer. You feel good under our feet, blowing through our hair and warming the fuzzy part of our necks. You bring ice cream and missed bedtimes and shivers getting out of the pool. You are sun baked towels. Fresh cut grass. Chores that can wait until later. You are full of smiles and looks that linger between a husband and wife, now father and mother, who know this is just about as delicious as life gets. Hail to the sunniest season of the year, and of our life together, so far.

Not Me! Monday

2009-06-22T15:49:00.004-06:00

(This picture has nothing to do with this post, but I had to share. He is a complete ray of sunshine. And yes, those are his pajamas--I would never let my kids play in the backyard before they're dressed for the day. Not me!)

I am soooo independent. I never rely on others to make my life possible. I would never ask my darling sister and bend-over-backwards mother-in-law to change their lives on a weekly basis to shelter, feed, care for and otherwise nurture my little ones. Not me!

I would never ask this of them because I never (and I mean NEVER) need an escape, a playground, a something else to think about in order to refuel and remember why I adore being a most-the-time mom most of the time. I would never think my babies' faces look just a little sweeter, a little less conniving, and a lot more irresistible after just a few hours away each week. Not me! I could never leave them, not even for a second to someone else's care who might teach them that there is more to the world than mom's smothering embrace.

So today it would be a totally irrelevant waste of time to thank what seems to be the multitudes of people in my life who surround and buoy up and take over when I need to find some sanity, adventure or carve out a little story of my own now and again. I would never thank them for not making me feel guilty about it either. Not me! I can do it all by myself. (Ha!)

Run, Run, Run, Run Runaway

2009-06-21T21:54:00.009-06:00

This weekend was the run. THE run. The Wasatch Back. The Ragnar. You can call it whatever gets your heart pounding, it all boils down to 12 team members. 188 miles. Two days. Run. Eat. Rest. Repeat.

The entire experience is part silly, part sublime. And every step is pure therapy. Sleeping in the cab of a truck, eating spaghetti off of paper plates, showering in a hockey team locker room; it all combines to provide moments of solace, triumph, self-doubt, and ultimate release.

My training and a week that pushed me back into the fetal position emotionally, melted together into a goo that fueled personal records on some cathartic runs.

This was my first of three runs during the 30 hours and 15 minutes it took our team to cover the near 200 miles of the course marathon style. I fretted over this climb because it was something I had never done before. It looked ugly. On paper, it looked nearly impossible. But it wasn't. Instead it was a joyous climb on a gorgeous day. I was surrounded by wildflowers and friends that are fast becoming family cheering me on. I surprised myself. I would do it again. Just for fun. Really.

By 10 pm it was time for my second run. It was a shorter run, just 4.2 miles over the rolling hills that lead to East Canyon. I wanted to kill it. I wanted to feel sweat on my face and a little burn in the early chill just after sunset. I wanted to run out the anger and frustration and sadness I've felt this week. This strange stew of ambition and surrender to the sport combined for a new personal record. 4.2 miles in 28:14. That's a 6:43 pace--one I normally couldn't pay my legs to run in the flats. But somehow it not only felt possible, but comfortable. Who is this chick? Not sure, but I think I'll invite her to stay.

I was overwhelmingly proud of a couple of girlfriends rookie to the race and one to running in general. They battled it out, faced the fear, overcame the challenge and felt the satisfaction of a job well done. They were a great example to me of making things happen, accepting opportunity in the moment it presents itself and the wisdom in just. putting. one. foot. in. front. of. the. other.

I am tempted to connect the dots. To dive deep into the obvious metaphors that are aching for me to explore. I'm not going to do it. This is what I know: Climb. Run. Battle. Refuel. Get up. Show up. Do it again. And again. And again. Until the impossible is accomplished. Look back on it all and remember that you could have never been part of the party if you hadn't signed on for all the hard work. Today, tomorrow and the next; Just. Keep. Moving. Forward.

Tethered Down and Cath Bound

2009-06-17T21:43:00.009-06:00

Some days just don't turn out the way you hope. And when this is the view out your front door at five o'clock, you know it's been one of those days.

McKay's check-in with cardiology came none too soon according to his doc and his sats. Little Boy Blue's oxygenation has been steadily declining over the past few months and point by point he's earned his awful green tanks back. He bounced between 69-74% oxygen saturation today at clinic after a 77% three weeks ago at his pediatrician's office. That's a big thumbs down for a kiddo who should be hovering in the mid-80's post-Glenn and still has over a year until his Fontan. Yes, the tanks and tubes are back to be used "as much as possible" with a wiggly soon-to-be-on-the-move 10 month old and they brought a more permanent friend, a zealously labeled pediatric oxygen concentrator with them. It's loud and obnoxious and does not go with the decor. GO HOME. It looks like I'd better make peace with it, however, because they all may be overstaying their never-were welcome.

(If any of you experienced heart moms out there know any tricks for how to assure roly-poly oxygen-wearing babes don't get tangled up in the tubes at night, please share. Tonight I just ran the tubing down the back of his pjs and out the bottom thinking it would be harder for his neck to get tangled up that way--thoughts??)

More concerning is the fact that his echos (like an ultrasound of his heart) reveal nothing that would indicate such low sats. No valve leakage. No squeeze issues. All GREAT news, but a continuation of the mystery nonetheless. McKay's cardiologist believes he may have some rogue vessels around his heart that are trying to create detours for the blood flowing into his lungs. Basically, we all have more minor blood vessels throughout our bodies that are perfectly content to be part of a more secondary blood supply to organs and tissues. But when an organ or tissue is not getting as much oxygen as the body would like, some of these vessels get pushy and self-important and decide to take things into their own hands. Some of these vessels can grow quite large and divert enough blood from its normal course of flow to create some pretty major complications. Ironically, these vessels that are trying to help the body can end up doing far more bad than good.

So what to do? The only way to truly know if that's what is happening is a trip to the heart cath lab. Boo. I have truly been dreading this almost inevitable part of the heart experience. We successfully avoided the cath lab prior to McKay's Glenn because, I firmly believe, I begged God to please not to make him (read: me) have to go through it. So instead we got an MRI. Much better in my book. I know it seems silly in light of the surgeries McKay has had for me to wince so much at the cath lab, but it just gives me the willies to think of that small tube snaking its way from the artery in Mac's chubby little thigh all the way into his perfectly ingenious little heart. Yuck. Alas, I don't get to choose these things and McKay is clearly in need of some interventions so we'll be preparing for a trip to the cath lab in the next couple of weeks.

So tonight I'm sulking a bit. Okay more than a bit. I stopped at one of my favorite bakeries (and there are many) on my way home from the hospital today because news like that just needs a cookie. Sadly, the news doesn't taste any sweeter tonight than it did earlier today--I even had two cookies just to make sure the first one wasn't a dud. No luck. Blah.

I know this feeling won't last. The sun will come out tomorrow and Mac will most likely take his new situation in stride. He is a marvelous work and a wonder. He's also the toughest cookie I know. Here's to sweeter days ahead.