Wednesday, February 25, 2009

Can You Hear Me Now?

We could get used to hearing news like we heard today about McKay's ears. And thankfully now we know whatever we hear, McKay will too. After failing two Otoacoustic Emissions Testing (OAE) auditory screenings and having some of the risk factors associated with hearing loss including the use of strong antibiotics and a long stay in ICU, McKay was referred for a more intensive Auditory Brain Stem Response (ABR) test. All fancy names and expensive tests to find out that (hooray!) Mr. Mac will never be able to tell me, "I didn't hear you, mom."

As you can see from the pic, McKay was out cold for the test. This because I was told to sleep deprive the poor dear to avoid having to sedate him which is always more risky for his heart. I did insane things to keep McKay awake today for his 3 pm evaluation including using the occasional kiss of an ice pack during the ride to the hospital to make sure he didn't visit dreamland too early. Borderline abusive--I know. But it worked. He was all too happy to give in to sleep when we finally let him and was a perfect patient during the testing.

Basically the test measured McKay's brain's response to sound. Earpieces placed in his ear canals conducted sound while electrodes on his forehead and just behind his earlobes tracked the sound moving through the ear to the brain. We were more than relieved to hear the tech say everything looked perfect.

They advised us to pay attention to his language development and still want to see McKay again in a year or two to double check the findings, but as far as the little dear's ears go we are free and clear for now. Thank you so much for all your prayers and concern~ I truly believe God knows we can only take one challenge at a time!

Monday, February 23, 2009

And Then He Was Four

Preston is FOUR today!

A remarkable feat considering just moments ago this was you...

Making your first unbreakable bonds with your brother.

Full of innocence and wonder.

You've always had such a great smile and great hair.

Both worth mentioning since your darling looks have saved your life more than once...
Not so slowly you changed from my content-to-play,

to my can't-slow-down-even-for-a-minute BRUISER .

(Eye courtesy a freak Thomas the Train incident...)

You have been an adventure my darling Preston.

Born at just the right time to nurse a broken grandfather back to health...

You have a special gift for understanding the unspoken.
(And you're scary smart.)

The first time you recited the alphabet at 2 1/2 years old you did it backward--perfectly. It was astonishing and a lovely party trick for the months that followed before preschool teachers ruined you into saying it like everyone else.

Fact is, you have a special spark. A passionate spirit your dad and I have vowed to focus and direct, but never fully tame. It will serve you well in the many years and accomplishments to come.

You experience life at full blast and we love you for it. Stay true to that crazy little drummer inside you little big man and march forward. We'll try to keep up.

xoxo~Mom and Dad.

Prayers for Gracie

I just need to say how hard and intently we are praying for Gracie today. It's been a cruel roller coaster ride of emotions and decisions for her family and her tiny body. Please, please Lord bless this family and this baby with peace and hope and love. Please guide and direct her doctors and her parents to thy will. If a miracle is in store, please bring it to pass. We continue to pray for thy tender mercies to visit this child and her family.

Sunday, February 22, 2009

The Alpha Male

The boy likes to eat!
When it comes to determining the alpha male of a household soon to be full of far too much testosterone, it's all about the stats--height, weight, speed, strength.

Ty has solidly held the alpha role through every stage of childhood thus far when compared to his brothers. He was born the biggest, he progressed the fastest, he did everything earlier than the others. That is until McKay's six month well check yesterday. Here's how his most recent stats compare:

At six months old:
Tyler: 17 pounds 4 ounces/ 27 inches long
Preston: 16 pounds 1.5 ounces/ 26 inches long
McKay: 17 pounds 14.5 ounces/ 27 and 3/4 inches long (that's the 97th percentile for those of you playing at home!!)

What? My sickest baby is my healthiest baby? He's snatched the alpha spot from Ty for now? The pediatrician just laughed and said he's never seen anything like it. He was half expecting McKay to let his little thumper slow his growth after such a quick and robust beginning. But as of today, there are no signs McKay intends to let the stereotype define him. Right on Mr. Independent. "But don't be fooled," the doc went on to warn, "Any type of infection or illness could become a major setback--don't let your guard down just yet." Will do.

As for the surprise hearing fiasco, I was hoping to hear the ped say it was common for kids to fail their first screening. Apparently it's not. He said about 1 in 1,000 kids fail. We'll head in to Primary's for the brain stem response test on Wednesday. Let's hope for a reversal on the issue, huh?

Lastly, I discussed McKay's abhorrent sleep habits with the doc. He asked if McKay was still sleeping in our room. No--not for months. How often is he waking? Every 2-3 hours. How long do we let him cry? Not at all. In fact, we're in his room within seconds of the first fuss. "Aha!" the doc replies. "He has trained you."

Now hold on here. We were told not to let the darling cry, that it would be too much for his heart. Apparently that was advice for before his Glenn and during his recovery. Now he is good to go for some down and dirty Ferberizing. Hmmm. Am I?

"Do you promise he won't explode?"

"What?" his ped says in a half surprised laugh.

"I have nightmares his little heart will explode, the stitches will come undone, all because I let him cry," I explain.

(The doc is in full blown laughter now.) "No, I 100 percent promise McKay will not explode. That said, I understand what you're saying and it is totally up to you as to what you want to do, of course."

So what's your vote? Let him cry it out for a few nights and be done? What do the heart moms have to say? Has this been an issue for your post-surgery kiddos? I would love to know...almost as much as I would love to sleep. :)

Saturday, February 21, 2009

Gracie Girl Gets a Heart!!

HALLELUJAH! Our darling heart friend and hero Gracie did not have to wait long for the phone call that will change and save her life. After being listed for her transplant on Wednesday, her sweet family got the magic, tragic, nerve rattling, hope-filled call just a few hours ago (Saturday night) that a heart was available for Gracie.

As much as we cheer and pray and then cheer and pray some more for this remarkable family, it is not my place, nor my privilege to tell this little fighter's story. Please check Gracie's blog for all the details in the days and months to come. What a miracle.

Thursday, February 19, 2009

Six Months

Six months ago I was wearing quite a different size.

Six months ago I had one of the best...

and worst experiences of my life.

Six months ago everything changed.

For all of us.

Starting that day, we changed the way we measure time.

There is only before McKay...

and after.

We prefer after.

Happy six months old Mac-e-Moo.

You are fearfully and wonderfully made.

Wednesday, February 18, 2009

Good News for Gracie

I just had to share the good news that Gracie is officially listed with 1A status on the national transplant registry. That means her heart, in a very real sense, is now a national priority :)!

This little heart hero is such a fighter and has wowed all of us who know more than we'd like to about hearts and odds and complications and "what ifs." Normally, kids just don't make it through what Gracie has been made to endure. She is a marvelous work and a wonder.

Huge, roaring cheers to her family for their dedication to her. We hope with all we have that the all important "call" comes as soon as possible. Please continue to cheer and pray for Gracie and her remarkable spirit here.

Sunday, February 15, 2009


My Funny Little Valentine

Tonight I am full of random gratitudes. And so as not to forget the simple things that made me smile in the week that was, here are a few...

I am grateful that (as of Tuesday) we get to wake up and do this...

instead of this...

For grandmas that snuggle and read with my babies...

For the good, old fashioned thrill of opening up Valentines after school...

For new-found comfort in unexpected places...

For brothers that like to be together...

For movie nights on the sofa sleeper when dad is out of town...

For the fun of planning surprises for my boys...

And for the elation of a gift well received...

For having a bigger, better, broken, battered, bandaged, bolder heart than I had last year at this time; a heart full of a special kind of love that runs deeper, lasts longer, and is open to more.

Thursday, February 12, 2009

Short Lived

Our little happy dance was cut short today but some unexpected news. While things are still sunshine and rainbows for Mac's heart at present, his troubles are moving north.

Today we visited Primary's audiology clinic to finally get McKay's ears checked. With so much going on at his birth (and, quite frankly, bigger fish to fry) he missed his newborn hearing screening. Add to that the fact that he was discharged over Labor Day weekend for his first surgery and Thanksgiving weekend for his encore appearance, you can imagine that there was not an audiologist to be found. As a result his poor little ears have gone neglected until now.

So no big deal, right? We'll get his ears checked and then cross that off our list of "Things We Need to Worry About." Not so. Both of McKay's ears failed the screening today. The audiologist even put him through another test to rule out any fluid in the middle ear that would contribute to a false reading. She tested and tested again. Poor Mac failed and then failed again. I could feel myself get eerily calm and then the questions started flowing.

She asked, "How long was he in the NICU?" "Was he given antibiotics?" "Has he ever had an ear infection?" "Does hearing loss run in the family?" I felt like a robot. 11 days. Of course. Never. My grandparents and one uncle have hearing aides--does that count?

Apparently, some of the drugs they used to keep Mac alive and well in those early days have the nasty side effect of hearing loss for some kids. Awesome. And the heart and ears form at the same time in utero so there are come correlations between defects in both systems. Even awesomer.

Needless to say we not only did NOT get to cross fabulous hearing off our checklist today, but have been asked to get some additional testing done that involves sleep and food depriving him for a day and then attempting to get him to rest while they check his auditory system via his brain stem. I'm still not sure how that all goes down, but it sounds like absolutely the most awesomest of all. (Oh, except for the fact that hearing screening and treatments are NOT covered by our insurance policy--that's a double scoop of awesome to go.)

I am not panicking--yet. There is still much to learn before I can give myself permission to go there. But tonight I am frustrated. Believe me, I know we are blessed. I am the first to acknowledge that the Lord has been beyond generous with us. But I am ready to relax for more than one cotton pickin' minute. Is there a lesson I am supposed to have learned already? One that I've missed? PLEASE just tell me what it is I am supposed to get Zen with and I'll do it--then we can stop messing with my kid!

There. I'm done. That's all out there and now the ugliness is on its way out of me. Right now I really and truly want nothing more than a happy ending for Princess Gracie. As many of you know Gracie headed to Primary's on Tuesday to prepare for her Glenn surgery (the same surgery McKay had in November), but instead her family was given the devastating news that Gracie will need a new heart. Please, please pray for them.

Tuesday, February 10, 2009

Heart Week >>Heart Doctor.

Two months have passed since McKay's last check in with his cardiologist. Two months! Two months since the Glenn. Two months without oxygen. Two months of cautious optimism...

And today all the news is good.

Mac checked in with cardiology and now weighs in at 17 pounds 1 ounce and is a smidgen over 27 inches long. He's HUGE!! He's growing like a normal, very healthy kid. What an impostor!
I love it.

At one point today I had a doctor actually utter the words, "McKay is the healthiest heart kid I have EVER seen." Do we get a medal? A trophy? A sash? Oh please, a sash!

I'm seriously crying again just reliving the experience. I don't know if I can explain to you the utter joy that overwhelms my soul every time we get good news about McKay. It's almost as if someone who has been sitting on my chest for months, suddenly decides to get up. And as that weight is lifted I not only feel lighter, feel like I can breathe again, but almost as if I will lose contact with the ground and take flight. It's an amazing feeling that lasts about all of 30 seconds until they start talking "next steps." BLAH. No recap of next steps today. We are reveling in tiny victories that take huge commitments to attain. Today we are winning.

(SIDE NOTE: Be cautious--we were warned RSV season is vicious this year and is reaching a crescendo. Kids from a few weeks old to several years old are being hospitalized. PICU was FULL today. Yes, our lockdown will continue...)

As ecstatic as I was at the oodles of good news for McKay, I am devastated by the hurdles placed before his little heart friend Gracie. Today, too, was supposed to be full of good news and major steps forward for 11 month old Gracie. But as can happen, the tests came back with cruel results, and now her sweet family is wrestling with decisions no one should be asked to make. (Please visit Gracie's blog to learn more.) I want to share her story with you not only because she needs your faith and prayers, but because Gracie's story and struggle teaches me not to take anything for granted. I feel like I hold a miracle everyday--we all hold miracles of different types. Right now, Gracie needs a few extra miracles to come her way and her mom and dad need a whole lot of clear thinking and confidence in faith well placed. We send a TREMENDOUS amount of love to them tonight.

Hug your kids. Kiss your spouse. Praise God and recognize the miracles that are yours. Actually, I think one of mine is calling me now...

Monday, February 9, 2009

We "Heart" CHD Awareness

This week we'll all be thinking about our hearts--our sweethearts, our dear hearts, those with big hearts who will leave us feeling all kinds of fluttery with warm Valentine wishes. May I ask that you remember some of the littlest hearts this week, too?

February 7-14 is Congenital Heart Defect (CHD) Awareness Week. And although, CHD is the most frequently occurring birth defect and the leading cause of birth-defect related deaths it receives little to no funding for research, prevention or awareness. It's time for that to change. Here are some facts about CHD that may interest you:
  • Sometimes during early pregnancy, a baby's heart fails to form properly, resulting in structural abnormalities known as Congenital Heart Defects. Although some defects are genetic, in many cases the cause is unknown.

  • It is estimated that 40,000 babies with Congenital Heart Defects (CHD) are born in the United States each year. More than 1 million American children and adults with Congenital Heart Defects and Childhood Onset Heart Disease are alive today.

  • Although some babies will be diagnosed at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, less fatal CHDs are not detected until adolescence or adulthood.

  • Some CHDs may not require treatment other than periodic visits to a Pediatric Cardiologist. Others can be treated with medications or repaired with surgery and/or procedures. Complex defects may require several surgeries and are never really "cured."

  • In the US there are nearly twice as many deaths due to CHDs than that of all forms of childhood cancers combined. Yet there is 5 times more research for pediatric cancer than for CHDs.

  • Only about 30% of the children who need a heart transplant receive one in time.

  • About 40,000 units of blood are used daily & only about 5% of adults who can donate blood do so. Someone needs blood every three seconds in the United States; that someone is often one of our heart children.

  • Many cases of sudden cardiac death in young athletes are caused by undiagnosed CHDs and Childhood Onset Heart Disease. It is estimated that more adults than children are living with congenital heart disease, and this population is expected to grow by 5% each year.

It's time to talk about Congenital Heart Defects. Excuse my soapbox, but it's time to give families more advice than to consider termination. These kids are worth saving! It's time to raise awareness and start to look for the reasons CHD is becoming shockingly more common.

What can you do? Support research. Be an organ donor. Give blood. Donate platelets. During his last surgery McKay was forced to use platelets that weren't a perfect match because the blood bank had no other options for him. That meant McKay had to receive even more meds to prevent long term complications. These kids have enough stacked against them already. If you can, please give blood. Do it for the cookies. Do it for the free OJ. Do it for McKay!
P.S. Please say prayers for little Gracie who will have her Glenn operation this week. It's about time this fighter had an easy round or two...

Sunday, February 8, 2009

Self Important

Yesterday Ty and I ventured to the doctor's for his 6-year well child visit. I was nice, for a change, to sit in the exam room waiting for the doc with my biggest guy and very little worries.

Ty is huge. 90th percentile for weight. 97th percentile for height. He is abundantly healthy and I even earned kudos from the doc for the fact that he has only seen him once since his 5-year old check up. Yes, he's had a very healthy year.

We skipped back to the car, loaded in and celebrated the successful appointment. Then, out of the blue, Ty says, "Mom, what would we do without you?"

Oh, my sweet guy. I smiled and said, "Don't worry about that Ty, I will always be here."

"No mom, what would we do without you?" Ty insisted.

"Ty, you don't have to worry about that," I said again.

"No mom, not YOU; -EW. You know like in "news" and "Andrew." I'm talking about the sound "ew". Not you," he clarified.

"Oh, I see. That would be hard to live without "ew"," I conceded.

I had to laugh at my assumption that my little guy could possibly be considering the sad state of a life without mom. How self important am I? :)

Wednesday, February 4, 2009

A Little to the Left

McKay leans a little to the left. No; I don't mean that he voted for Obama (although I'm sure he would have :)). I mean his little five and a half month old body has a tendency to lean to the left. When sitting in his Bumbo or swing or on a lap, after a while he tends to collapse somewhere in the middle and always to the left. Couple that mysterious hinge with his inability to sit or roll yet and I have become a bit concerned. Not worried; but concerned.

Fortunately, as all things seem to work out this way in our life this year, our dear neighbor just happens to be a physical therapist at Primary Children's. Another astonishing coincidence? I think not. After much discussion she came over last Friday to do an official evaluation of McKay's development.

The session looked more like a vigorous play time routine and the two smiled and talked to each other the entire time. The conclusion? McKay leans a little to the left. Even when she extended his arms over his head he struggled to guard his left shoulder and held it visibly tighter than the right.

"Well the good news is that I don't think he's had a stroke," she said.

"WHAT!!!???," is what my brain wanted to say, but my mouth had the sense to ask, "Why would you say that?"

"Many of these kids have small, mini strokes following surgery that can leave part or all of one side of their body affected, but McKay's limitation does not seem to indicate a stroke," she said.

Okay, good.

She then asked about his incisions and was puzzled to here me say that he has large incision sites under his right arm and down the center of his chest, but no procedures had ever been done on his left side.
Hmmm. She guessed that it may have to do with the way they had to cut through his abdominal wall and its subsequent healing. Nothing that cannot be corrected through some targeted exercises, though.

She asked me to give her a couple of days to get a plan together for McKay and then we'd regroup.

Two days later I had a blue notebook in hand with some of Mac's medical records and a series of exercises we are to consider homework between physical therapy visits. It was fascinating to read the records. With a child like McKay you soon learn that there's what the doctors tell you and then there is what is noted in his records. I much prefer the records and read them every chance I get. As usual there are some new terms that detail what was found and repaired during each of his surgeries. I have yet to finish researching the terms, but am comforted to know that when needed, the dots are easily connected between those angels who provide his care.

So going forward it looks like Mac will get a personal trainer for the next few months through a program called Early Intervention. I have every confidence that he will be crawling circles around his peers very soon. Oy! Is it wise for a mother of three to encourage that? :) After all, whenever McKay is asked to do anything, he always accomplishes the task at hand with exceptional results--we only need to ask and teach.

I am certain this is one of the lessons the Lord is trying to teach me--To do the things I think I cannot do. To find a way. To not just survive, but excel at what seems impossible. On most days, I can feel his confidence in me. It is a new sureness in my life. It makes me strong, but not in the ways you might expect. I no longer go to great lengths to do everything on my own. I am asking for more help than ever before and that simple act of reaching out has blessed our family. Now it's not just me trying and failing so often at the goals the Lord has for us, but instead it is me trying and leaning on others and succeeding more often in what He would have me do. It's also teaching my kids HUGE lessons about service and compassion and the love that the world has for them.

We are truly here to help each other--that simple truth has become crystal clear to me time and again. Today I have so much to pay forward and I will begin with my baby Mac. McKay is a giant. He will move mountains. He will teach many hard and necessary truths. He is my man. My cuddle bug. My giggle gut. My hero. And once his body is straight and strong chances are I will do what I can to sway him to think a little to the left anyway. :)