The Latest Check Up

McKay was an absolute show off at his four month check up yesterday. The boy wonder continues to amaze the docs with his resilient nature and phenomenal growth. Despite spending this last month recovering--a process that zaps a substantial amount of energy and calories while depressing appetite--little buddy packed on another 13 ounces! That brings the grand total to 14 pounds, 14 ounces. Add that to a 26.25 inch body length and McKay is solidly at the bigger end of even the healthy kids in his age group. Can I get a hallelujah?

And for all the outside world can see he is healthy. Aside from an at least once daily case of rampant hiccups, he's had no colds, flus or otherwise. Not even a sniffle. That simple report translates into a major payday for all the hassle of the sanitizer-bathed lockdown we've put him (and the rest of us) under.

Even better than all the medically-measured progress, Mac's little personality is really beginning to shine through. He flirted with the cute nurse yesterday grinning and then faking a shy look whenever she smiled back. He's a bucket of giggles when things are going his way and a bit of a grump when he's protesting. It was a riot to watch him wonder at the chaos of Christmas and fall in love with his new stash of toys and equipment. His new Bumbo chair has been a perspective-altering, life changer that has offered our little man (and his momma) a bit of freedom. I would highly recommend it to anyone with a hold-me-now-and-always child.

So there you have it. Quite the crew dontcha' think? Thanks for making this holiday season one we'll always remember. Our dress this season has truly matched our changing mood. We began the season in sanitized hospital attire and ended it at home in matching jammies. And really, a good pair of jammies makes all the difference.

The Year

I've never been a very consistent journal writer. I've abandoned at least a dozen leather-bound beauties over the years. In fact, this blog is as close as I've come to having something tangible (is cyberspace tangible?) to look back on as some sort of personal chronicle. And as this time of year does, my chronicle is begging for a "best of" look back at 2008.

As I think back on the way my life, our lives, have changed over the past year, the me of just a year ago seems almost unrecognizable. Here's what I consider my top life-changing days of the past year:

January 19, 2008: Ran my fastest half-marathon time! What a fun race--great friends, gorgeous sunshine, fast feet. That day set a standard for what my body can do and how good I can feel. Note for 2009: Get there again.


April 8, 2008: We learn about McKay's heart. There is nothing that can prepare you for the way a new baby changes your life. And I don't think it matters if it's new baby number one, two, three, or more--they all bring magic of their own. Unsure whether or not this would be Ty's last opportunity to "meet" a sibling via ultrasound, we took him to our 20-week peek at McKay (not yet then named, of course). As the room got far too quiet and the technician spent far too long looking at McKay's heart, the only thing that helped me keep it together in that initial panic was Ty. His sweet face and many, many questions helped to keep his mom aware that now was not the time to lose it. Be calm I kept telling myself. It's all going to work out. Just be calm.

I remember shaking as I tried to dial my girlfriend who was watching Preston and asking her if Matt could run Ty over so we could meet with the doctor to get a clearer scoop on the reality and gravity of the situation. As good friends do, she said of course and told me to breathe. Good advice. I smiled at Ty as he and dad trotted to the car. Of the whole ordeal that morning, I pray he will only remember the words, "It's another brother!" He was so excited.


April 24, 2008: Preston goes in for wrist surgery. As our first experience at having to turn your child over to another person and trust them with their medical well being, it was a bit traumatic! Of course, looking back this seemed to have been the warm up act for our relationship with Primary Children's Hospital and meeting out of pocket expenses. Preston's minor, outpatient cyst removal came before we truly understood the gravity of McKay's situation. I remember walking Preston out to the car and saying to Matt, "Let's never come back here for real, okay?"


May 21, 2008: We found Lu. Our hunger for details about McKay's condition was nearly insatiable at first. We Googled, we referenced, we interviewed any and all medical professionals we knew. We wanted to find, hear, read the words, "Everything will be fine." We never did. But we did find little Luna and her amazing momma.

I felt hope wash over me and spill into our life in steady waves when I found little Luna's blog. Despite the rarity of the combination of McKay's conditions, we discovered he was not alone on the planet. That was HUGE for me. Someone had seen this before. Someone had blazed a trail. Someone was holding a baby that looked as right as rain despite it all.

Luna and her mom have been kind enough to humor our questions, pray, and cheer us through McKay's delivery and all that's followed. Kind enough to tell us that no matter what the doctors said these babies can be nursed, enjoy being cuddled, grow, and lead fairly normal lives. Kind enough to create a vision of health and happiness despite all that we were being prepared for and shown otherwise. Oh how I craved those early emails. Thank you, thank you, thank you Lu & Co. You have become the best we've-never-met-you-but-adore-you friends we will ever know. Note for 2009: Correct the never met you part.


August 20, 2008: McKay makes a memorable debut. I could write so much about the events of this day. But honestly, there are things so sacred about this experience that I must keep them to myself now and always. McKay, just know that I am honored to be your mother and would have given anything to have traded places with you in those early hours, today, and always. I can't take this trial away, but I can help you carry it. I will always help you carry it.


August 25, 2008: Ty starts kindergarten. You were so ready for this day, Ty. I know I cried just this morning as I helped get you dressed, but you're getting so big, so quickly. Slow down just a bit for me, okay? You are a force in this world. A small, powerful little ray of sunshine ready to spread your light a little further everyday. I am amazed by your focus and your progress. I cannot wait to see what you'll do next. Thanks for giving me a front row seat as you reveal pockets full of possibilities.


October 27, 2008: Darling baby Cooper returns to our Heavenly Father. As we watched Matt's cousin Cassie and her sweet husband say goodbye to their little fighter we felt the mortality of our situation return. These little guys are so strong, but so much can go so terribly wrong. Cassie and Tyson seem to be finding their way through it all. We just spoke again last week after a silence that lasted far too long. We talked about how the world looks different now. How this experience changes you. How there is never the right thing to say, but how you need people to just say something. I love you Cassie.


November 24, 2008: Preparing for the Glenn. This may have been the longest night of my life. I have never felt such heaviness. I watched you sleep this night McKay and prayed God would let me bring you home again. I wanted to prepare you, to warn you, to say I'm sorry--I'm so very, very sorry. But you would have none of it. Even in the near darkness of your room I could see and feel you smiling at me. You and your brave little soul breezed through surgery the next day and we were home within the week. And you were just so matter of fact about it. God is merciful and you are a miracle.


December 16, 2008: Celebrated ten years with my split apart. My feelings on this subject have been chronicled fairly recently, so no need to rehash how unbelievably blessed I am to have the most patient, most loving, most amazing father, husband, and friend as my eternal partner. No need to tell him how much his love means to me and our boys. No, definitely no need for that. :)


December 25, 2008: A day of gratitude. For all the triumph and trauma of the past 12 months, we were together, awesome in love and number, and we were happy. I have a house full of noise, crowded with toys, and overflowing with blessings. McKay has found his voice this month and chimes in with a laugh-inducing stream of babble that melts hearts. Another talker! What will I do? Oh well. Silence is overrated. Note for 2009: Let the wild rumpus continue.

Merry Chrithmuth

We are down one front tooth at our house tonight and up one happy five year old. Boy, my kids can be a lot of work. But most days, and especially on days like today, they are so worth it. If you could see your heart smile, this is what it would look like. Wishing you a season of flossy dental bliss.

Paprika, But Not For Long

A couple of weeks ago I read another mom’s blog entry about how she was ready to get her spice back. The entire time I was reading I was thinking, “Yeah, me too. I’m ready to be spicy again.”

For some reason that metaphor has not left me and tonight I find myself at the solid realization that if I were to classify myself as a spice today I’d be Paprika. Why Paprika? Because Paprika looks fancy. It brings everything together. It is even bright red like it may have some kick to it. But we all know that Paprika is near useless as a spice, more like a decorative seasoning.

Oh, my mom and I have argued about Paprika. “Put some Paprika on it Mindi; the recipe calls for paprika.” No mom. I’m not adding Paprika. It’s just the principle of the thing. It does nothing.

What spice do I hope to be? I’m not looking to get greedy like say a Chili Powder—I don’t need to walk into a room and take over. But I do want to get enough of a distinctive flavor back that you know when I’m missing…maybe Cumin or Curry. No. Not Curry. In college I lived upstairs from a family that cooked with Curry incessantly and their kitchen vented through my closet. No, not Curry.

This is all a strange and pointless exercise, but the fact is that I actually scolded my hubby tonight for breathing too annoying close to my ear. How dumb is that? Cumin would never do that. Even worse, I am still bugged about it as I type. I need an outlet. I need some spice. I think I’m declaring 2009 the year of the spice—and I’m going to find me some.

Believe

I try to tone down most things Santa-related this time of year...except for this. I adore the Santa we take our boys to see. My boys have visited with him every year they've been on the planet and he keeps even me believing in the innocence that is the essence of Christmas. Here's a peek at this year's keepers~

Pure Joy

My First Christmas

Good Enough

My Babe

Dear Matt,

Well here we are. 10 years later. Tomorrow marks a decade of married life together and I just have to let you (and the world) know how much this anniversary means to me.

Truth be told, we've now spent half of our lives together. Who would have guessed 16 years ago those two kids having their spectacular first kiss under the stars in the chilly canyon night would turn into an eternal family. Oddly enough, I think something in us knew. Why else would we have been so patient, so steady, so non-high-school-like with each other through those early years? Remember how we used to say, "This feels like forever"? It still does.

Knowing you are the love of my life is an impression that grows stronger every day. I truly want to be with you ALL the time. I know that sounds ridiculous, but I can't think of anything I do that isn't better when you're there. You are a gift to me.

Have I told you that I think you are the best dad in the world? Our boys adore you. This past year I have seen you love them, fight for them, protect them like the hero they think you are. You love them, you teach them, respect who they are, and include them in so much of what you do. They know they are important to you. You don't just tell them that. You show them. And it's that example that will make them into fathers just like the one you are. There is nothing that would make me more proud. They hold you on a pedestal and you earn it--day in, day out.

We have grown what feels like a lot older and a lot wiser this year when it comes to understanding things that really matter. Your support, your love, your knowing looks, and calm hugs have saved me. You have taken what was good about us and helped make it great. I would not have survived this roller coaster without you. You are not my rock; you are my mountain.

I want you to know I am happy. Really deep down in my soul happy. You are a HUGE part of creating that happiness and constantly reminding me where to find it. Thank you for sharing your life with me, for being a true partner in every sense, for respecting me--flaws and all, and for helping me see so much goodness all around us.

I love you in more ways than I can express and look forward to so many more years of us getting to know each other. I chose you. And I choose you every day. I feel so blessed that God chose us.

Forever yours,

Mindi

Happiness is...

McKay may have finally turned the corner today. Hooray! Instead of whimpering his way through the day, giving a few good hours of full-bodied crying, his expressions today said "pick me up," "hold me this way, not that"; the type of protests more in line with his peer group. Ahhh. My baby is on his way back.

Of course I cannot speak for his darling Aunt and Uncle who had to endure his most vocal protests of the day for the short while we ran out to Matt's firm Christmas party tonight. Of course. Is two hours really enough time to even notice we're gone? Apparently so. Our fail safe? Put him in the tub until we get home. It's true. McKay has spent a disproportionate amount of his life afloat. There must be some school of thought out there that argues exposure to water as a method for lifelong happiness, right? Thanks for the bath Aunt Hil.

We also came home to some special Christmas surprises. A gorgeous fruit basket (Thanks Robyne and Spencer!) and an anonymous "Christmas Jar" mysteriously left on our front porch. We were so taken back by the gift of the jar, I'm not sure I'm fully ready to share what it is and the amazing spirit it brought into our home. Let me just say that we discussed the meaning of the word "sacred" tonight with our children and agreed as a family to pray about how we should use the jar. Amazing. Just amazing. To whomever left the gift, your note would have been enough. I was moved on many levels. Thank you for trusting us with this new and exceptional tradition. We will honor it.

As for the promised details of our check up yesterday, there is much to celebrate. First let's hear a "whoop, whoop" for 87. That's McKay's new O2 level when he's on his own. We couldn't even get him him into the 70s on a full liter of oxygen two weeks ago. Now that's getting what you paid for! Well done miracle workers.

McKay's chest xray was clear except for the twist-tie looking fasteners that hold his healing sternum in place. I had to smile thinking these were the kind of xrays little boys would love to take to show and tell. I will look forward to that day for McKay. Mostly, the xrays check for fluid build up in the lungs and chest cavity. No fluids holding Mr. McKay's heart back, thank you very much.

Next, the EKG. We had to laugh at our ham. Here was a baby that had cried pretty consistently for days prior to his appointment. But you would have never known it for all the smiles and shy looks he gave his nurse as she placed twelve sticker-backed patches on his chest, hooked up probes, and then removed the stickers. He smiled through the entire thing. Really?

In any event, the consensus is that McKay will stay on a few drugs for the months to come to assure he does not retain fluid around his heart or in his lungs. But that's it. No more oxygen. No more tubes. And we don't have to go back to the hospital until February. February!

I called Matt at work today just to tell him the joy I felt picking McKay up out of his crib and walking out of his room, down the stairs, wherever we wanted without having to lug, trip, and bumble over those awful tanks and tubes. We felt free. And it made me smile.

I got a call earlier this week from a friend of a friend whose baby was just diagnosed in utero with different, but similar congenital heart defects. It felt good to talk to her, to say out loud what a blessing this experience has been--and mean it. To tell her to hold on to her positive attitude and expect the best. To understand the fear she's feeling and try to do what I can to bring some peace into her heart. To tell her to come meet McKay when she's ready and see what 14 pounds of hope looks like. I think she will.

We will never be the same and I don't think we ever want to be. It's on days when we call each other just to say we're happy. Or scared. Or distracted. It's on those days where something special and permanent hangs in the air between us. We all feel more connected somehow. To each other. To our neighbors, friends, and family. To strangers who have shared similar experiences who we now call friends. Really, this experience has brought so much and taken away so little. It's funny--we spend our entire lives planning the details of our future when really it's the experiences we could have never expected, and most definitely would never hope for, that truly end up making us what we are. And tonight, we are happy.

Double Take

We've been doing double takes of McKay all day and must agree....we like the tube-free look! His post-op check up went amazingly well. He has maintained weight at 14 pounds 1 ounce, turned in a perfect chest x-ray, and passed his EKG. All unimaginably difficult tests for our chunky monkey, but he seems to make everything look easy. The reward? No more tubes!!!! I'd say more...but there are cheeks to be kissed...more details on our fab day to come. :)

Waiting on the Magic

I'll admit it, the snow helped. But I have definitely been in a Christmas funk the past week. I think it started while I was trying to put away some of the boys' toys. As I tried to shove the Lego box back into its place on the toy shelf, I felt sick thinking my boys could not possibly have need for one more overpriced, plastic, thinga-ma-jig destined to be dropped, stepped on, or otherwise destroyed followed by a fit of tears as to how that was their favorite toy ever. And yet I have another obnoxious stash of bright, shiny plastic thinga-ma-jigs all ready for Christmas morning. Where in the world will we put them?

Friday night a strand of lights on the tree went out causing all the subsequent strands to fail--not good. Sunday Matt managed to find the strand, remove it and get what was left of the lights working again--good. When I asked if he would replace the strand, he claimed no one would notice the dark spot on the tree--whatever.

McKay has cried for three days. It is really beginning to get to me. The boys have learned just to ignore it and shout over him. Matt read bedtime stories to the boys last night over McKay's screaming and said no one seemed to notice. Poor dears -- the older boys for having to live like this and poor McKay for feeling this way. The only thing that seems to soothe him is a shallow bath. But you can only let your baby float for so long! He gets too cold too quickly any way since he can't have any water on his belly yet. So out of the bath he comes and resumes crying until he's either held in the perfect position or falls asleep. I'm told his headaches should end soon--I sure hope so. At times he absolutely claws at his eyes as if he's trying to attack whatever is causing him such pain. Maybe they'll have some suggestions at his check up tomorrow.

But today as the winter sunshine streams through the window and warms my back, I can feel my heavy heart warming to the season, too.

The boys have so many toys because they are adored by family that spoil them rotten as every child should be. And I am SO thankful for family. I will teach them to part with some of their treasures and bless others with their abundance.

The Christmas lights go out because we are fortunate to have a gorgeous tree dripping in ornaments fashioned in preschool classrooms or carried home as souvenirs from an envious array of vacations. I am blessed with a decorated life.

My baby cries because he is alive. There was a time not so long ago when my heart ached to hear him cry. I swore in the moment of his first struggling cry almost five full days after he was born, I would never take hearing his voice for granted. And although we are blessed with audible evidence of his presence in abundance now, I am grateful his fired up little body is firing on more cylinders than before. Be comforted little one.

So the magic may come in spurts instead of a steady flow this year, but it will come. How could it not? Our life has been nothing but a steady series of miracles, our home is full of children dazzled by all things Christmas, and we feel the steady love of the Savior for which the season is celebrated. Chances are most of you will not get a Christmas card from me this year. For that I am sad. But I cannot apologize for all the other priorities that have taken their place securely in front of that Christmas tradition this year. Maybe next year we'll get back to the busy things that usually make up this season for me, but for now we're focusing on quality over quantity; perspective over pressure. A different Christmas, indeed.

Some Thoughts

My mind has been flooded and rather overwhelmed with thoughts on charity this week. This is probably not a shock to the many of you who have shown tremendous charity to our family over the past few months. Truth is we’ve been on the receiving end of some of the most sincere and simple acts of charity I know. And I won't sleep tonight until I put pen to paper on some of my random revelations. (This would be the more-for-me-than-you part of this online journal :). )

Take the box pictured at the top of this post. It is chock full of activities for me to do with my kids while we’re on lockdown with McKay. A dear friend dropped by out of the blue a couple nights ago at the crescendo of a long day. Play dough, music, coloring books, fruit loop necklaces, you name it; it’s in there. My kids practically hyperventilate until it’s time to open the “Present of the Day.” It gives us something to look forward to, something to get excited about, something to talk about other than why I can’t take them to the zoo, the aquarium, the store. Instead, they want to stay home and exhaust the surprise activity at hand. And of course it is all that much more exciting because it is not from mom. As my friend explained the box over McKay's screaming, I cried. She cried. She came in and held my (in that moment) sad little babe for five minutes so I could show some love to his older brothers and help them get PJs on. Then she left as gently as she came. An absolute angel. Can you imagine how unbelievably grateful I am for her?

And the kindness continues. I was introduced to the concept of the "porch visit" today by another friend. A highly charitable activity. The best I can explain it is this--It’s kind of like when the prisoner comes to the special desk partitioned with Plexiglas and picks up the phone to visit with whomever is on the other side. Only porch visits are better because you can give that I-understand-what-your-going-through-and-it’s-all going-to-be-okay hug at the end of your chat. And you don’t have to wear the orange jumpsuit. Huge bonus.

Add that kind of love to the phone calls, meals, babysitting, and presently non-reciprocal car pool, and the prayers; the many, many prayers--it all adds up to overwhelm a girl who usually feels very uncomfortable receiving such kindnesses. I think most of us do. No one likes to be the “charity case.” We’d all prefer to give the help, make the meal, be the genius who comes up with the box of activities for the kids (seriously!). But the epiphany that has come to me today is that not only do I need to be more aware and proactive about meeting the needs of others around me; but why would I ever discourage any form of charity (read: pure love) in my life?

The simple clarity that is mine to share is this—If Christ himself showed up at my door and asked me if I would like Him to perform miracles for my family, would I ever turn Him away? NEVER. I would fall at His feet, welcome Him in, and beg Him to stay. What I understand very clearly today is that He doesn’t have to come. Instead he has sent an army of angels to surround our family and share His love. So many of you are those angels. Please understand I know whose errand you’re on and I do not take it lightly. I will spend the rest of my life paying your kindnesses forward; so aware that I don’t need the okay from someone to serve them. I just need to serve Him. And He will let me know what needs to be done.

I cannot adequately express the way my testimony of so many things has grown this year. But in this season where we all soften our hearts a bit and turn our thoughts to a small baby that changed everything, I cannot help feel a bit of a parallel in my life. I am humbled. I am grateful. I am in awe. There is so, so much to be thankful for.

Back to Life

Last day at the hospital; relaxing and watching Baby Einstein.

On my way home with my "I might be little, but I'm tough"
t-shirt. And boy is he.

Sorry we've been slow to post, but I am now trying to do what a team of people were doing for little Mac last week. Factor in the sometimes-helpful-and-always-entertaining help of his two big brothers, and we're a recipe for what would be a highly-entertaining reality show. Not sure what we'd call it, but real life doesn't get more real than us these days.

Mr. McKay came home with a small cocktail of drugs to keep him on the mend over the next 10 days. We are still experimenting to find the right balance of pain meds for our little guy. We're not fans of the loopy, glassy-eyed look and his new this-really-hurts cry is too much for a momma to bear. I think we're getting close though--he seemed pretty comfortable most of the day today and spent most of his awake time as his smiley self. He will stay on oxygen until his final post-op checkup on the 10th. Apparently at our altitude, the small flow of O2 he's on gives the heart and pulmonary artery enough of a rest to make a difference in how well they heal. We can definitely do 10 more days if it means stronger working parts.

The poor little man looks like a battlefield. I just can't think about what he's been through for too long or I lose it. It's one thing to see his incision. That scar we expected. But his entire chest, both wrists and ankles, and his neck are absolutely pock marked with small scabs from IVs, tubes, and sutures. I'm sure the smaller marks will go away, but they are there now and for some reason it's those tiny marks that are the hardest for me to take.

But at least we are home. Every little trivial thing today felt wonderful--the dishes, the laundry, hauling out all the Christmas mess. The kids are so excited and their million questions about Santa, his elves, the sleigh, and Ty's constant quizzing of Preston as to the true meaning of Christmas have flooded the house with the magic of this glorious season. As we put up the tree tonight and took the goofiest pictures of the three of them together I knew I already had everything I need this year right there under that tree. Awesome.







Of course, if I were to get something it would be a vacuum. Not just any vacuum; a Dyson DC14 Animal. Oh how I've had my eye on that pleasantly purple dream of a machine. Well guess what was waiting for McKay and me when we piled into car to come home on Saturday?...my Dyson! I mean McKay's Dyson. My whole play for the sucking wonder over the last few weeks has been centered on how important it could be for McKay's health to have the world's most amazing vacuum in our home. Apparently that worked for Matt. Love him. Love welcome home presents. Love my Dyson!

All in all, McKay continues to amaze. He is truly stronger than I am in so many ways. And if we continue to be slow to post it's because I am typing with one hand and holding him with the other. I may never let go again. Much love to all.


Our thoughts and prayers are with the Christoffersen family tonight who suffered the tragic loss of their amazing father today. He was a hero to our son as his Sunday school teacher last year~and his example as a sweetheart and father will be always remembered and sorely missed. Thank you for sharing your love with us.