Monday, January 30, 2012

Coming out of it.

Jackie boy is starting to come out of it; showing promise that his heart rhythm is starting to sync up . He finally has an occasional P wave, (since I just learned what in the heck a P wave is, let me now school you: a P wave an electrical current that startes the initiation of a heart beat). For my doctor friends out there, please ignore how pedestrian my explanation is).

Slowly, getting back to our boy.
He is all smiles, except for when the evil gas rears it's ugly head.

He he, rears. Get it?

It's a good thing I still have my wonderful sense of humor to accompany me.
His look of shock when I told him what happened to his chest when he was sleeping.

He is also SO much more alert. Prior to the surgery he slept practically all day. And then after the surgery he was drugged so as to help keep him still. But, he is making up for all the sleep he's been getting now. Yesterday he was awake from two in the afternoon till eleven. At which point I had a tiny breakdown.

I called Chad back from home to spend the night with Jack and I went to Theresa's who lives nearby. Three nights in a row at the hospital and my single highest night of sleep was four hours. Enter. . . emotional, irrational, irritated Jamie. She's a TON of fun, biatchy too. Seven hours of sleep last night and I am a new woman. With sleep everything is possible.

I even curled my hair this morning. I just needed to do something normal.

Jack is slowly getting better. His lungs are still too wet from excess fluid due to over-circulation of the heart due to a high heart rate. Thus causing him to have a hard time breathing without some extra oxygen. See how fun medicine is? Dominons I tell you. They saw his heart rhythm for a few minutes when they turned the pacer off. Happy with the progress, they are "cautiously optimistic".

They put him back on the pacer for the day hoping that another day and he will then beat completely in sinus rhythm. So, that's whats up for today.

Sunday, January 29, 2012

They are trying to figure you out, Jack.

How about you do all of us, especially Dr. Alkon a favor and give us a clue.

For the past 48 hours Jack has had an alarmingly high heart rate. They worked on him for hours yesterday trying to slow it down. They think they understand why it is high; but it isn't responding to the medicines like it should. So that is confusing for them.

Occasionally after such a major repair the heart swells and that causes irritation between the sinus node and the av node. Thus creating confusion with the heart rhythm. This what they believe is happening. Though this far out from surgery it is not typical and it generally responds to the medicine to slow the rhythm. So, everyone is kind of stumped. And, it's been too long at this high of a rate 160 beats per minute when he is sleeping and between 160 to190 when he is awake.


Saturday, January 28, 2012

Don't set limits on this boy.

Absolutely every step of the way Jack has dramatically exceeded my expectations. And, my sweet son, we need you to do it again. I know we are asking you to be strong and to do more; but more, you must. Your heart rate has risen dramatically and is ticking away at 180 beats per minute. Please, chill out; take a chill pill.


Also, tell your mitral value to stop misbehaving. That'd be swell.

Jack's mitral value's leakage has increased more than they would like. It is causing his heart rate to rise and beat rapidly, consistently. I asked the cardiologist if it was possible for it to go back to minimal leakage (which is what they left the operating room at).

Dr. Alkon reported that it was possible.

Not satisfied with that answer I asked if it was probable.

Dr. Alkon hesitated and said he didn't want to say.

. . .this isn't terrible, but it also isn't good. It has opened the door to the possibility of going back in and replacing that valve.

But, I know my boy. He has defied the odds every single step of the way and I know it is within him to do so again.

. . .come-on Jackie boy!

Friday, January 27, 2012

Carry me through.

Today was good; hard moments though. Difficult to stand idly by while your child is in pain, especially difficult to sit and watch them suffer knowing that it is ultimately for their own good. If we give Jack too much morphine then it snows him and he doesn't breath well. If we don't move and adjust him here and there then fluid builds up around his heart and that's no good either.

So we do the things to him that hurt and we don't give him everything we can because we love him and we know what is best for him. But, we don't ask him to do more than we know he can do. We believe in him, rally around him and feel just plain awful watching him struggle with what we are calling upon him to do.

Sound familiar?

I swear, the plan of salvation similarities are just too good for me to ignore. We are all here in this mortal state, being called upon in different ways to do hard things. Things that we beg and plead with Heavenly Father to just take away. Make it better. And sometimes he does,

. . .and sometimes he doesn't. And them's the brakes. No amount of anger, resentfulness, pleading or bargaining will change the fact that we are all subject to the will of a loving Father in Heaven.

Here, in this moment though there is a tremendous opportunity. Opportunity to draw nearer to God; to come to know yourself and his ways more intimately. A chance to rely on something bigger than you. Your chance to show that you trust and believe that our Father in Heaven knows you and loves you personally. That he knows your sorrows. Once you do this, submit to the will of the Father then; that is the moment where your capacity to accept and feel the strength of the spirit can grow immensely.

Submitting to the will of the Father is part of it, the other part of it is in the asking; prayer. Our prayers and the prayers offered by many on our behalf. What a difference this has made, all the difference. Asking for help, understanding and strength to endure. These past days in the hospital have been hard and at times just downright awful but they've also been incredibly wonderful. We have seen miracles, felt the strength of the spirt being poured out over us and then that same comforting spirit has resided mightily with us, carrying all of us through these times.

Thursday, January 26, 2012

These people.

Are. . .totally AWESOME!

Here is the lead surgeon, Dr. Derby, doing a stop and check this afternoon.

Medicine is one of the lucky professions that actually mean something to people. We are just so incredibly thankful for modern medicine and the people who dedicate their lives to it. They give so many years of their lives to becoming proficient at their chosen field of work. Then they continue by giving long hours; working through exhaustion and stress.

The level of intelligence, diligence and just plain hard work they give is awe inspiring. We just couldn't be more grateful for them and the future they have blessed Jack with.
Here I am with Dr. Stock, Jack's cardiologist. We've become quite acquainted over these past months. I started going to him when I was pregnant and then once Jack was born about every two weeks.
This post just wouldn't be complete without a shout-out to all the nurses. They are amazing. They buzz around the room completing all the many many tasks they are to do. Jack has thus far been on a one to one nursing level. Meaning his nurse only has him for a patient.

All of yesterday and until just lately here we've had a steady stream of about six different people at a time working on our dear Jack. This past couple of hours it has slowed down a bit. So that's nice. They are an incredible team, this entire floor is only pediatric ICU heart patients. They work amazingly well together, everyone has their specific job and seeing all of them doing it with such speed and precision is something.

My last post I wrote a bit about the trouble Jack had coming off the ventilator. We only saw them in action for a brief moment but they were a moving! Around twelve different people all working together with such precise determination all towards one goal. It is a sight. And also terrifying.

Chad asked Dr. Grimaldi how she would rate Jack's recovery,

"gold star, but that can change at any moment. We are all very very happy though, he has done remarkably well."

Through the forest

A little excitement around here, they've taken the endo track ea tube out. And he liked it in, so he decided to stop breathing as a protest. I happened to be in the lactation room at the time, I come out and see my friend briskly walking away from Jack's room with tears in her eyes.

Then I walk further down the hall to see about a dozen people working on and bagging Jack.

Um, cue sheer terror.

Dr. Grimaldi looked up at us and said, "everything is under control, but please let us do our jobs and go out to the waiting room. I'll come for you once he is stable."

We went out to the waiting room and waited. I think we all felt concerned but also knew that this was just part of the process.

Dr. Grimaldi came out about fifteen minutes later and invited us back into the room. Told us he was fine that she didn't re intubate him, that he pulled out of it on his own.

Chad told her that he could tell she meant business because she took off her white coat. She smiled and said that she has a couple of levels for changing depending upon how concerned she is. The first level is removing of the white coat, then the next level up is pulling her hair back.

I looked over and noticed that her hair was pulled up in a sloppy ponytail.

So, things are still good. Chaotic though. Lots of people working on him, hovering over seeing to his care.

He is resting comfortably now though. Another deep breath.

Wednesday, January 25, 2012

Unusual anatomy.

I mean, you know how the Meads roll after all. Why in world would we start to do things 'normally' at this point.

I've talked to I think five different members of the team now and all of them have confirmed that they have never seen anatomy like Jacks.

I could have totally called that one. I mean once they saw the wristband and saw the last name Mead, they should have called their bookie. We're that awesome.
But seriously, things could not have gone better. Jack's heart repair was a Tetrolgy of Fallot and an AV canal. But it wasn't a typical AV canal as it was missing they 'typical' top portion and the bottom instead of missing was turned inward like a 'v'. This complicated the repair of the Tetrolgy for the surgeons as it moved the VSD hole up and at a sharp angle. Dr. Derby said they were almost standing on their heads to get into the correct position to even see what they were working on.

But they did it, all of them: Dr. Derby, Dr. Nygro, Dr. Morrell, Dr. Stock, Dr. Ellsworth, Dr. Grimaldi, all of the nurses and wonderful support staff. They give the term professionals a higher meaning.

Each one as we've spoken about the surgery are practically beaming. They are so happy with how well it went. The first doctor said the outcome was nothing short of a miracle. An incredibly complicated, unusual repair followed by an outcome they say you dream of.

Which is awesome; cause we've got us some big dreams for this boy.


Jack is off bypass. Should take about an hour to close. All is well. Ran into cardiologist in the hallway, none of the team had ever seen a heart like Jacks. He said it was an incredibly difficult repair, but that Jack was amazing. Stable the entire time. Not even one moment of deviation. More info to come once the surgeon finishes and comes to see us. Cardiologist said that you couldn't ask for a better repair. Miracle was the word he used.

. . .that's our boy!

Hold my hand.

Four hours in and there is a steady calm surrounding us. There is the quiet hum of people carrying on around us: the waiting room television, a couple of quiet whispers of other parents, a stray phone call.

Moments like this make me think of a saying you've probably heard before:

'Be extra kind to everyone you meet because about half of the people you encounter are in some sort of crisis. So you'll be right about half the time."

How true that is. What does this the extra bit of kindness cost you? Hold eye contact for a moment, accompanied with a smile, to communicate,

"I see you."

People suffer, but we march on, often unaware of a stranger's pain, sadness and worries. Simply by taking a moment and giving a kind smile or word can ease a burden. I have been humbled to be the recipient of so many of these gestures. They have indeed made a difference. As I sit in this waiting room I feel comforted. I know it is the spirt giving me comfort. What a gift that our Father in Heaven gives to us, his children.

***Surgery update***
Jack is four hours into the surgery at this point. The OR nurse comes out just about on the hour (bless that woman), she reports that he is very stable. His stats are good and his body is strong. There haven't been any reconstruction surprises with the heart. Things are progressing normally.

***Another surgery update since I wrote***
Nurse just came out. They are slowing the repair pace as the VSD defect is very high and at an angle, causing some problems. But nurse reports that Jack is a rock (her words). He is very stable and doing well.


Jackson's surgery is underway. We are in the waiting room feeling comfort and peace. I thought I would be a mess. I feel strong. Chad gave Jack a blessing last night, our children are praying for Jack, we are praying for Jack and so are you. Chad blessed Jack last night that angels would attend and keep him. Here in my quiet spot I too feel the presence of Gods angels.

Jack was all smiles this morning. We held and enjoyed him. This is the face he made when we told him what was going to happen.

Jack feel asleep for about an hour on my chest before we handed him over. He was sucking away on his tongue the entire time, thinking if he just kept going he'd get something. We spoke with the surgeon, nurses, and anesthesiologist and then it was time. I handed him to Kim the lead OR nurse. He woke right up and looked over at Chad and I with as straight of a backbone as humanly possible. As Kim walked Jack away from us, tears that had welled up finally spilled out. What happened next I will never forget.

They were just about to pass through the double doors that lead into the operating room. Jack, (wide awake) looked back at us and with his arm hung over Kim's shoulder waved his hand up and down twice. Everyone there, three nurses, Chad and I all exhaled a laugh. Our grief in that moment was interrupted with that joy. We all smiled greatly to each other at the sweetness of this moment that we had been graced with through God's tender mercy.

Sunday, January 22, 2012

Shoulder to shoulder.

Days away from Jack's surgery we feel the love. We feel the supportive arms wrapped around us from loved ones near and far.
On Wednesday Chad and I will hand Jackson over to people we believe will make him better. We cannot physically do anything to repair Jack's heart but we can rally around him in faith and prayer. We can reach out to those around us who know and love Jack and ask them to remember this boy.

When I visualize Jack's surgery he is on a table with people working around him on all sides, encircling him. Then surrounding those people there is us; all of us, coming together in faith and prayer for Jack.

As a mother I cannot adequately express my gratitude for this.

Wednesday, January 18, 2012


The passage of time is a surety of life; but the feeling of time passing is perplexing. Sometimes it feels like it is racing past and I am an audience member watching my life fly by. Other times it feels like I've hitched a ride on a turtle and I'm meandering through.

A week from today our life will be different. I pray that it will be in the way that I wish. I've been dreading this day and now it is upon us. Wednesday 8:00 AM.

It's been about a week since Jack went on the books for surgery. Time has since been flying by. When it's 114 degrees out and the summer just won't be over fast enough; time, takes it's sweet little time. But now, when I want to put it on a perpetual slow motion loop it marches on. Happens with lots of different things, and it's different for different people. Take Christmas; when I was a kid it felt like it was never going to be here and I swear it was just Halloween and now Christmas' come and gone.

The spirit of contentment I think controls the feeling of time passing.

The happier you are to be in whichever moment you are in; time passes more normally. I've slowed from my usually rabbit pace through the days to more of a deer's pace. Fast when the moment necessitates it but otherwise quietly taking in my surroundings. I almost said turtle's pace but I am still me, and I don't think even my pinky toe has that pace.

Usually I am doing three to four things at once all day long. Or at least planning them out in my head while doing one thing. These days I've taken to my bed often. I lay with Jack looking on at him while he eats. In those moments I am most content. I do not need to control my mind from moving onto this or that, I am present; I enjoy him. He takes his hand out and feels around my face now. Another milestone reached.

This makes me cry as I type that sentence. I want nothing more than to come here and tell everyone of the next ones he reaches. More than anything. Taking a moment. . .


I've had this little monster in my house since finding out that Jack must go through this. I'm looking forward to getting him out of my linen closet. I haven't had to deal with him yet. Time is bringing me closer and closer to that door, hour by hour. Almost time to open that door and greet the little stinker.

I don't want Jack to go through this but he must. I'm preparing by slowing down; taking Jack in, smelling him; important things. Small things that are often taken for granted and raced past, unnoticed. Not now. I am savoring every moment that I can get my hands on.

This is one thing I hope I never forget: to live with this razor sharp intention to simply, pay attention.

Tuesday, January 17, 2012

Y'all know that we're arming them, right?

Does the age in which you own your first firearm correlate with how awesome you are? Yes, it absolutely freaking does. Owen is loving roaming the desert with his gun, shooting stuff. Here is the front of our house, isn't the desert beautiful? Further to the right the view of the city lays out below. At sunset and during the evening lights the views are lovely, we are loving the winter here in Arizona.

So, now we're armed and dangerous round these parts.

Sunday, January 15, 2012

Pinewood derby, the tradition continues

That is the tradition of. . .the Mead's kicking booty!

Saturday was the Pinewood derby round these parts and Owen cleaned up! He won every race he was in except one which at least according to his father was due to a slightly bent wheel. A minor fix-up and the winning streak continued. Owen was a little embarrassed at first about his car and even asked Chad to hold it so that he wouldn't be seen with it. Safe to say the paint job left a little to be desired. BUT, the engineering of that bad boy was awesome! Weighing in at exactly 5 ounces the Mead wedge dominated.

Owen was shy about his car until he had his first win then he was proud to hold the Destroyer (his name). He took first place all around and won best block of wood. He and Chad worked on it, I contributed the imperative idea to use super glue instead of hot glue that way we could add more weight.

I wasn't able to go (we're not taking Mr. Jack out so that he can be as healthy and strong for his surgery as possible) but Chad kept me updated via email as the winning streak.


Friday, January 13, 2012

WHAT. . .I love you. . .

This girl cracks us up.

A couple of Sundays ago Chad and I were in the office doing important internet research. Him on the laptop playing chess and I on the desktop surfing design blogs. You know.

It was late in the day and both of us had kind of had it with the kids. We had just sent all of them out to roam the desert to give us some peace when Lily came busting into the office. She was greeted by Chad and I simultaneously telling her to get out! Not necessarily in a mean tone, but in an I'm not effing around tone. Is effing an offensive term? I certainly hope not; while I don't particularly use the term in my regular dialogue. It does find it's way out occasionally to add that extra bit of umph when the situation calls for it.

Anyways, now that you've lost a little bit more respect for me we shall move on. Upon us commanding her out of the room she left us with one last line. To enjoy it as much as we did read it according to the directions that are in the parenthesis.

Lily to both of us: " WHAT!!!!"(exasperated and quite loud) then she turned and as she walked out of the room she continues,

. . ."I love you." (dejected and quietly stated so as to manipulate)

We already know just how much trouble we are in for.

Wednesday, January 11, 2012

Jack's first smile.

While we were in Flagstaff over Christmas this year we managed to catch another leprechaun. A leprechaun is (official Mead definition): a child's first smile caught on film
It was the day after Christmas and Lily was having some fun with Jackie boy. She was playing peek a boo with him, some tickling and hand holding.
Then, it came. He was bubbling over with giggles, little noises, smiles. It ROCKED our world. He was grinning from ear to ear. Everyone in that room was grinning from ear to ear.
Just look at how he is looking at her, makes this mama's heart melt. This boy is SO loved. Everyone is taken in with his charms; relegated to become just another one of his followers. He's like the Bachelor round these parts. Everyone clamoring to be by him, hoping for that time to spend with him. Once they get that precious one on one time, they only have flattering things to say of him. Secretly or sometimes not so secretly praying/hoping for a kiss.

And, lucky them; this boy loves to give some open mouth ones!
Some gentle hand holding.
Notice the boots or should I say boot. While I was packing up our hud (a Chad term that has somehow through osmosis streamed it's way into my vocabulary) Lily took offense to her boots. They were red after all and not her precious pink or purple.

So, unbeknownst to me she flung one of them out of the suitcase. Only to be discovered once we were preparing for our first sledding adventure. It's a good thing I'm so at home with white trash antics. I didn't even flinch an eye at slapping an extra sock on, sticking a glove found in the parking lot over that, some Ziploc gallon bags and topped it off with some duck tape. Bam. Ready to go.
I know I know, I go on and on about how important it is to me that my children love each other and value those relationships. But it is! So, capturing this moment on camera is precious. Seeing Lily get to play the older sibling role and loving on her precious Jackie (pretty much the only thing she calls him)is amazing.

. . .Jackie no wlove youd Jaackie wlove wiLily.

She sings it loud and proud almost daily around these parts, but now without the accompaniment of a guitar--that's already broken.

Monday, January 9, 2012

It was a white Christmas after all.

Y'all remember that we surprised the kids with a trip to the snow for Christmas. It was so great! Some things we do, we do like, once, but this; this is going to become a Christmas tradition. Except I probably wouldn't stay the night next time, just go up, sled and come back (too much kids stuff!!!)
We went to Flagstaff, a two hour drive away about noon on Christmas day. The kids brought along their newly acquired electronic devices so that made for a very very quiet drive. Chad and I enjoyed it immensely.
We stayed at the Little America there, which is darling. beautifully decorated rooms and large too, which for all these little ones makes for a very comfortable stay. Even, though now having four kids we have graduated to two hotel rooms. The three oldest stayed in the room adjoining our with two queen size beds and Chad and I and Jack in a room with a king.

I realized how freaking spoiled my children are all going to be when it was time for bed. Two beds: three children. Luke was so disgusted at the thought of sharing a QUEEN size bed that he opted to sleep on the floor. I told him that when I was growing up I stayed in a hotel room with eight people and two beds.

Impossible. He still does not believe that this is true.
Before we got to the whole sleeping issues there was. . .snow! We got there, checked in and set off to find some snow for sledding. Quite a bunch we were. We went with our friends the Yorks, they have two teenage daughters so our hot mess of a family looked even more out of control next to theirs. Oh well.
The first spot we went was littered with many large trees along the path. Not exactly the safest place to go flying down a hill at top speeds. But, you totally know we did! Come-on, we're the Meads after all!
We got our thrill on here for a time, with Chad and Aaron manning the trees to serve as human blockades to potential brain damage. I even managed to totally wipe Aaron out when Lily and I went down, to which she exclaimed, "YEAH!!! That was awesome, lets go again!"

That's my girl!
We found another hill after this one, which had no trees but; well, it was a teenisey bit steep. Upon pulling up Aaron was saying no way, no way, everyone back in the car. I was already halfway up the hill at this point. I sit down and thanks to some extra baby weight, got about seven feet airborne off the jump at the bottom.
Needless to say, everyone had an awesome time! We coerced everyone to the big hill and had a great time. Went out for some yummy food and since it was Christmas day, we had, Chinese! Sweet, thank goodness for other cultures! Since it was one of two places in the entire town that was open it took no less than three hours for dinner and they literally served it plate by plate with twenty minute increments between servings. We gave the definition of family style dining a run for it's money.

The next day brought more sledding, vomit, breastfeeding in public. Ya, know; a normal day. Makes you want to travel with the Mead's eh.

MOM!! you makin me wook wierd!

Lily uttered these exact words to me three days ago. Below is the exact outfit she was wearing. She is the one standing all the way to the left.

Stay tuned till the end and you'll get your first and last peek of me in some lingerie. I figure that sentence could go one of two ways: nothing will stop you until you see aforementioned photo or, you have already shut down you're computer and are frantically attempting a mind erase for the mental image that you had upon reading that line.
IMG 3.51.37 PM
Apparently Boden, Crewcuts, and Janie and Jack are all; weird. It is kind of sad; Lily, my only chance to play dress up with my very own real life doll. . .wants to look like a rag-a-muffin ALL THE TIME. And, to be fair, she usually does.

It is a sort of negotiation she and I have routinely; (occasionally when I have an extra five minutes before we have to be somewhere to be and I have a moment to get her to brush her hair and in semi-decent clothing), me to Lily, "Lily it's time to change your clothes, you may change them when we get home but you have to come here and pick between these two outfits that I picked out."

She begrudgingly chooses and for a brief moment in time she doesn't look like she belongs at Walmart. ;) For those of you who may be offended at that, never fear! Most of the time I don't have those extra five minutes and she does look like she belongs there.

Here is how she wants to dress ALL THE TIME. I curse the existence of these two items of clothing.

The tiered dress and the monkey shirt. Burn in hell I tell you!!! Notice the hair? Yeah, that's how her hair looks on a good day. As I was looking through my photos I came across a bunch of me growing up and had to laugh. Because I was the exact same. Ugh. My mom, bless that woman, would sew beautiful clothes for me to wear. I would wear them, come home and immediately rip them off to put on well. . .I'll let you decide.
How my mother wanted me to look. . .

Her dress, but I jazzed it up with a very sophisticated glow in the dark necklace and my friends headband. You know, for flare.
Leg warmers too, yeah! Why the heck not!

Suspenders and sweater, white bow and a heart shaped purse! Genius.

High-tops, in white no less, yellow pants with pink shirt and a heart shaped watch. Ohhh.

And finally, what those of you how have stuck around have been dying to see. . .the Victoria's Secret shot. Man! All I've got to say about all the photos of myself in this post is: I HAVE THE WORLDS MOST AMAZING FASHION SENSE.

. . .carry on Lily carry on, maybe you're onto something after all.

Friday, January 6, 2012

Christmas 2011

Prepare yourself for tons of pictures of children with uncombed hair opening presents. And blurry images, the children's excitement over certain presents made it impossible to get a good picture. They did not stop moving or in Owen's case, leaping. Merry Christmas.
This princess book was one of her favorite presents.

Duke being inspected by Luke for metal.
Jack was thrilled.
He is a Texan after all, it's been long enough that he hasn't been bearing arms.

A 3DS!!! Those words were excited screamed as Luke jumped up and down, repeatedly.
Owen's grand finale gift: an Ipod touch. Needless to say he did not stop moving for some time.
Lily as it turns out is quite the singer. Upon receiving this guitar she composed several songs. One of which she sang to me (in her best vertebrata voice), "Jackie no love you, Jackie love Lily, sorry mommy, but Jackie ondly wlove Lily, yes, Jackie love Lily, no lovey mommy."

The big reveal would have worked better if I had plugged the boys' cars in to the batteries. Instead Lily's car came out alone.

The last present the children received were some sleds, even though they thought they were surf boards. We surprised them with a trip to Flagstaff so that it could be a white Christmas after all.