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.

Grateful

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.

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.

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...

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...

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? :)

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. :)