All is Well

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

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

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

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

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

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

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.