Monday, March 19, 2012

Can I ask you a question?

Fifteen years ago if I would have known you, sat next to you in class or seen you across a football field I would have asked you this;

"do you think there will be tulips on temple square in March?"















Hundreds of people were polled; varying answers resulted. The day came, March 14th 1997 and there wasn't a single tulip on temple square. Nada. Mr. Mead being the wonderful man he is takes this day now and fills my life with tulips. Fifteen years have passed; we have good times, bad times and downright wonderful times.

The mister and I have been through a lot together and laughed more than anybody could hope for. Our courtship was marked by us sitting on the couch or one of our twin beds (oh la la) talking late into the night. Three days after we met we sat on a couch and talked for twelve hours straight. Communicators we are!

I couldn't hope for a better partner to file my days away with. He's not prefect and I certainly am not but we don't focus on what isn't (learned that a long time ago). We both try to emphasize and concentrate on the good and let go of the rest. I count myself a lucky girl that I managed to "ensnare him with my sweet sweet trickery"--actual words from his proposal.

From our first kiss while watching Dumb and Dumber to him giving Lily a bath two days ago (equally sexy) this man has my love.

Friday, March 16, 2012

No matter how I awesome I think I am. . .

Here I am looking all sassy; it's 1:30 and I'm out of my workout clothes. I stay in them until I get my workout in; which most days mean I stay in them all day. . . you do the math. But today!, today I got's my stuff together. Lily and I did yoga on the patio, Jack looked on and gave encouraging grunts. Which he had totally better, because he's the reason I'm so fat after all. I didn't want to eat my way to a sixty pound weight gain, it was all a tremendous sacrifice.






















There is a little problem though; I cannot fool everybody, there will always be Jenny who knows the score. And everybody I tell because the story is just too good not to share. Consider it my contribution to you feeling better about yourself today. Sit back and enjoy my personal humiliation.

As I have expounded upon at length, we live on a mountain. Daily I kick all the children out into the desert to go and play. There is nothing I despise more than TV/video game coma children. So, a few weeks ago the children were frolicking outside as they do. Luke was at a friends house and Owen had a friend over. Lily was tagging along with Owen, until, she wasn't. . .

Owen and Jake decided that they were sick of her and told her to go home. Tiny problem was they were halfway up the mountain and she didn't know what way was home. Now there are about eight house in the area where we live; which would probably include, I don't know, around a hundred acres (I'm not a great estimator).

So, there is Lily, our perfectly darling baby girl, lost. Alone, wandering around, not seeing "mommy's house."

About an hour has past at this point and I still think they are all together; having yet another delightful childhood day. It's 5:45 and it's nearing the time that we need to be leaving for a scout activity. I go out and yell to round the children up. My voice booms across the landscape and draws no reaction.

Strange.

I shout again, and nothing.

All of a sudden I feel panic; where are they, I wonder.

With great relief I hear Owen say, "coming." Satisfied I go inside to get last minute things complete before we all load up. Ten more minutes go by. I'm annoyed.

"OWEN!!!!!!!," I yell.

"yeah" he replies (like our previous conversation hadn't happened)

. . ."get over here, NOW!!" I say in an I'm not effing around tone.

A begrudging, "I'm coming," reply comes from the distance. But, the tone ignites terror within me. I know my boy and I know something is not right. With Jack in my arms I race out to the desert to find him. I come upon Owen and Jake looking at the ground. I have a moment of frantic realization. Lily is not with them. They were stalling, trying to find her themselves.

"WHERE IS YOUR SISTER!!!!"

"Um, I don't know, I mean, she wasn't with us, remember?" Owen offers.

Thoroughly terrified; my voice cracks as adrenaline surges through me. "Tell me the truth, and tell it quick."

. . ."well, she was following us and she couldn't hike with us cause she had those ballet slippers on. . ."

I cut them off and scream out, "she's just a baby! She can't be on the mountain by herself. Owen, how could you! GO, GO both of you race to where you saw her last, shout, scream, we have to find her. It will be dark in thirty minutes."

They tear off back up the trail and I race back home, hoping and praying that she is playing sweetly in the toy room. I race through the entire house in four minutes flat. I am panicked. I quickly call our neighbors the LeSueur's to enlist them in the search. He answers on the second ring and four of them race out to help.

Screaming rings throughout the fading light. Jack cries out in fear with each intense shout I make. I hear distant voices of the others; LILY echos. Twenty more minutes pass, shouts ahead communicating something different. I can't understand though. Communication back and forth, but I still haven't heard definitively.

Hope. It's maybe fifteen more minutes till dark.

I shout forward, "do you have her?"

Mumbles return; they are too far, out of ear shot. I'm racing forward with Jack in my arms (this sounds really dramatic, but IT WAS).

"What? Scream yes if you've found her."

"YES"

Hundred of different horrible scenarios flood out of me. She is okay, we know where she is.

I finally reach her. She had wandered onto someone's property and their dog's barking had alerted them to her presence. They brought her inside and tried to coax her name out. She refused because, "mama sayws not talk swangers." She then proceeded to jabber their ears off for an hour and half; everything except her name, because "dem de rweulls."

We chat for a few minutes and they offer to drive us home, (we're quite a ways away). I cancel our plans for the evening. I feel like I've aged seven months, Chad pulls in the driveway a few moments later and I sob to him.

Daily life continues as it always does. Days pass, probably at a much slower pace for a certain person (he was a wee desperate for human contact (two weeks to be exact)). A week passes and I notice a red bump growing at the base of Jack's incision. Great. A call to the surgeon and an appointment was made. I took Lily with me and left the boys home. I anticipated being gone for maybe an hour, tops.

Upon arrival at the office they immediately direct us the the ER. Staph infection, not good. We went over, my general laid back approach provided me much comfort. Things are under control, some medicine, we'll be home soon. They ran a blood tests, and made plans to drain the now marble sized puss ball. I called home to check in on the boys, things were fine. Another hour passes, I call the LeSueurs again to see if the boys could come over for dinner.

Sure! Send em over. . .

I call back and give them the news, they're very excited! So excited that they. . .go to the wrong house. Fancy a guess which house the ended up at? Yeah, that's the house. I get a call at the ER but it's right at the moment that they are trying to start Jack's IV. A voice mail message alert goes off. A few minutes later once Jack is settled I listen.

. . ."His Jamie, this is Jenny Newenguard, we met briefly last week when we found Lily, um, your boys just showed up here and said that they were here for dinner. Um, can you give me a call and let me know what's going on? Yeah, they said that they haven't eaten, um, just give me a call."

Just shoot me, in the face, please.

Tuesday, March 6, 2012

Before and After

The night before Jacks surgery I took some photos of his little body before he got in a knife fight with a surgeon.






































waiving to his adoring fans















This is taken nine days after his surgery.



Here he is today; the final scab finally fell off during his bath last night. He is doing amazingly well too. Babies heal SOOO quickly. A little hiccup as you can see, the very bottom of his incision is infected and we're going into the surgeon today to get that all taken care of. Otherwise, all is well! All of the medications but one has been weaned off. He takes two naps a day and is awake about nine hours during the day. What a change! He is hungrier these days, I started giving him rice cereal and baby food. He loves it, but you can't give it to him when he's too hungry otherwise he gets frustrated at the pace. I.want.it.now!!

He loves his walker and the kids love to pull him into their rooms for some time with the boy. Nobody can resist doing a stop and chat with Jack. I think it is pretty much impossible to walk by; Owen, Luke, Lily, Chad--everyone wants their time with the most popular member of our family.

Friday, March 2, 2012

This baby.

Is growing up.















I was watching a couple of her baby videos last week and it feels like just yesterday she was cruising around the house in her walker. Now she telling jokes and making her own sandwiches.















For those of you who haven't had the privilege of her telling you a joke I will try to demonstrate.

Lily-- "Mom, wanna hear a joke?"
Me-- "Sure."
Lily--"Ah nus and das an hust sa en dis okay and did hus lske gal sf ahe ha ha ha ha. . .weird."
Me--"Ha ha ha ha ha, very good joke Rubby."

**you always know it is your turn to laugh once you hear the cue word, 'weird'.

Lily--"Wanna hear a joke?"

. . .she tells lots of jokes these days.

Wednesday, February 29, 2012

Lets see if we can make it go higher.

Life is wild; my children are wild. There really is something to that whole apple and the tree saying.

As a mother to mostly boys (I'm going to half count Lily because while she is very much a girl, she is DEFINITELY crazy and will try pretty much anything). I love the rough and tumble nature of my kids. I have yet to have a mellow child, while they oftentimes stress me out with their shenanigans; I love it.















I love that when they see a pool they immediately try to see who can do the coolest flip/jump/spin into it. Why wouldn't you? That yesterday when we were riding our bikes home when we finally got to the blessed downhill part; Owen pedaled down it. Must.go.faster.















I firmly believe that it is easier trying to tame (if you will) someones spirit than trying to put spirit into someone. While right now it is difficult trying to keep them alive, I am grateful that they are out there leading their adventures. Fearlessly embracing this life.















These boys love each other; but they also fight, blame it on that testosterone. It makes them do crazy things. It's fun to see them slow down on occasion. They'll sit with and Jack an coax a smile out of him. Then shout for everyone to come and see the billionth smile this boy has given us. We all come too because, they are pretty amazing after all.















While I'm busy trying to keep heads attached to bodies and arms free of metal screws I am content with the spirits of my children. I like who they are. I am excited to see where their senses of adventure will take them in this life. Enjoying my time with them as a most interested spectator.

Monday, February 27, 2012

They were all crying in their soymilk

. . .because you know, they're lactose intolerant. Ha ha ha ha ha!

**For those of you about to be offended for me making fun of geeks being lactose intolerant, take a moment just . . .stop it! Okay, we will continue now.















The Mead winning tradition continues. Gee, writing all these posts about how awesome we are is really quite exhausting. Here goes; two Saturday's ago Chad, Owen and Luke went to dominate the chessters in greater Phoenix area who weren't too sickly to join in. Too much? Okay I'll try again; thanks to the milky white skin of those participating 259 units of greenhouse gases were offset during the event due to no overhead lighting being necessary. One more try? The census bureau had to readjust their 2012 census due to inaccurate reporting; the 97 participants left their mothers basements for the first time since going to the bookstore to purchase Nimzowitsch's My System.

For those of you still reading. . .congratulations!!! You are not a dweeb. Cool. I like, feel, like totally comfortable making fun of these chess people because I am forced to live with and love, three of them. Cereal.

I am so proud of my little dorks though! Chad and Owen both took first place in their division and Luke received a ribbon for participation (we now know who the true dorks are). In Owen's division the games were forty minutes and Chad's were two hours, they each played four games. Luke was a bit bummed out when they handed out the trophy's but was easily soothed when they gave out candy (he gets that part from me).

Chad's opponents ranged from fifteen to seventy (a change from the eight year old he usually plays and takes joy in occasionally beating at chess club). Love you dear! Chad set winning his division as a goal and take this from me, has been spending waaaayyyy too much time playing chess lately. At least he's got his trophy to keep him warm at night.

Sunday, February 26, 2012

Lily, our beautiful wiley child

Lily is beloved. She can barely do wrong, especially when she is so darn cute.

Lily is made up of 99.9% crackers. Any kind: Ritz, graham, goldfish, saltines--you name it. As her mother I feel it my duty to put something in her on a daily basis that once resembled a plant or animal.

In an effort to thwart my efforts she devised a brilliant plan. Tape over the glass door that leads to the pantry. This way silly mother will not be able to see that I am gorging myself on crackers and leave me in peace.

Clever Lily needed help cutting the tape but then shooed me away so that I would be none the wiser. Isn't she bright?

Just in case I became wise to her plans though she was prepared. She wrote a note saying, "do not come in dhis wroom, weave wily awone." (she translated for me and read it aloud in a commanding tone).

. . .and because of the love, I let that little girl of mine do just what she pleased. (she went through enough crackers to feed a hungry preschool, staff and children.)

But then later because of the love I have stopped buying all of this crap food. I don't know why I didn't just do this sooner, sorry Lily.

Thursday, February 23, 2012

Her rendering

Our Lily as it turns out is quite the artist.





























Last week she graced us with her impression of Jack in his walker.

It.was.the.cutest.thing.,ever.

She got one stool, supplied it with paper and pencil then got another stool and sat down to get the creative juices flowing. I wish I would have recorded it. She was talking to Jack the entire time,

"Jackie, turn dis way, no no no not that way, awe, fine, yes pwerfect. Stay just like dhat."

I washed my dishes and enjoyed their now two way conversations. Yes, two way, Jack can speak now. Only he knows what he says but, IT IS BLOWING HIS MIND, whatever it is. He also loves blowing bubbles/raspberries. He's pretty much amazing, just ask his mother.




















Brilliant, she's pretty amazing as well. ;)

Tuesday, February 21, 2012

Jack Chad

Have you been missing your daily texasmeads fix? I'm just going to assume your all silently nodding your heads. I've been busy watching and enjoying my children with frequent bouts of ignoring them. Jack has been growing stronger by the day.

Upon coming home from the hospital we are getting to see much more of 'awake Jack'. Prior to his surgery he slept practically all day. Now he's awake about nine to ten hours!! Yah! This has called for more diversions for the boy. We started out with a ginormous baby Mozart ultra saucer. He got to enjoy that for a week until I returned it. IT WAS SO FREAKING HUGE. I got him a new and improved. . .walker!

Yes, his feet are still about nine inches from the ground but it has toys for pete's sake. When he first started using it he could only stay in it for five minutes before his strength failed him and he slumped over. It's been about two weeks and just today he stayed in there for forty five minutes!! Boo-yah. During the time that he's awake I'm always moving him from playgym to tummy-time to sitting up in my lap--trying to help him be as strong as he can be. We're making up for lost time. . .





The last picture I just had to throw in of Jack in a button up shirt--get out!! Such a handsome boy and a photo bomber Owen.

Jack has a whole house of cheerleaders; everyone enjoys his little baby accomplishments greatly.

. . .never was there a more loved boy

Monday, February 20, 2012

You should be put down, like an animal

This is my man. I love him for many many reasons. One of which is how fun/funny he is. I don't think there is a day that goes by that he doesn't make me laugh. I love that. He infuses our family with laughter, teasing and joy. Makes for happy days.















You may be wondering how the title is applicable to the content. It was simply a line that Chad blurted out that had me in stitches. I will try to re-create the moment.

We were coming home from our fancy date night (Outback, no rules just right) and we were merging onto the highway from the on ramp. The car in front of us was struggling with merging; fearfully they were making their meager attempt to get onto the highway. Mr. Mead (of course at the wheel, he's that kind of man) was behind them and as we past them he shook his head in disgust while causally saying,

"you should be destroyed; put down like an animal."

. . .isn't he swell?

Wednesday, February 15, 2012

Owen's clubhouse

Just in front of our house and is Owen's original clubhouse, Luke informed that he has abandoned this spot for the latest real estate. Trends, trends. Have I expressed how much I am loving Arizona and my desert? No less than three times per day are the children all kicked outside and directed to not return until I call for them.

This, my friends is sanity for a mother of four.















Lily is allowed in the clubhouses, which is a good thing since when I asked Luke where his clubhouse was and he said, "all the way up to there (pointing about two miles east) to all the way over there (pointing to the road about 150 yards away) and just about all of this over here."

Everyone loves Luke.
















When I start missing items from the house I know that they are in one of twenty places. The clubhouse is a pretty good place to start though. A tomato wire climber thingy serves as a trash can. An old yoga mat found in the desert serves as an area rug. Wood pallets are furniture. Luke loves to load up on snacks and go down there to 'hang out'.

Saturday, February 11, 2012

Mad skills.

Meet Shelly, or Shell as we call her. This picture was taken by Lily and she'll probably kill me or at least spill some of the secrets I've told her for showing it. I'm willing to risk it. It's a little blurry but man!, doesn't' she have the smile of a freaking toothpaste commercial? Seriously.

But in addition to her dazzling whites she has skills. Mad skills to be exact.























Lily, our lovely only daughter, most days looks dirty. Literally dirty. Just try to run your fingers through that mess. Yeah, they get stuck about two inches in. As I was picking an image to contrast with there were SO many options! Seriously. . .























Enter, Mrs. Pearly Whites. Sunday while Jack was still in the hospital, Shell took the kids to church. She was dropped off in a dress (usual) and her hair camoflaouging about three cheerios (also usual). Shelly, knowing Lily and what a feat it was to have her looking like she doesn't belong on an advertisement for hungry children, texted me a photo right over.


















And just for good measure her hair stayed in this braid for a good three days after.

Love ya girl!

P.S. In addition to her talent for braiding Shelly is also awesome. She knows what it's all about, what it's all about. She has the wonderful ability to focus on what matters most and laugh at all the other crap that doesn't. I don't think there is ever a conversation we share where we aren't giggling at some point. Everybody needs their very own Shelly, cause if we didn't laugh about it. . .we'd all be cryin!

A difference

Earlier this week while I was driving the kids to school (I cannot seem to ever get them up and ready in time to make the bus!), Owen asked me a question. A question that I knew was coming but one that I wanted to come up naturally and in it's own due time.

Owen, sitting in the front seat of the car quietly asked me, "mom, does Jack have down syndrome?"






















I smiled over at him and simply said, "yeah."

Owen, surprised at my response, "really!, so that means he won't ever go to school and he's going to live with you and dad forever, right?"

I laughed a little to ease his anxiety, "Owie, of course Jack will go to school and we believe that Jack will leave and have his own life just like the rest of you. Having down syndrome just means that you have to work harder to do the same stuff you do and it takes a bit longer to learn things."

Sweet Owen took this information in and thought for a moment. "So this is the trial that Heavenly Father gave to Jack, kind of like the trial he gave me and Luke is that we have to check our blood sugars a lot, and Lily's trial is . . .what again?"

I smiled over at him and enjoyed his sweet innocence for a moment. "Yeah, kind of but Heavenly Father gave Jack something really really special. He gave Jack the ability to be kind and to love people and to see the good in all people."

Owen was obviously impressed and interrupted me with a "wow!"

"I know. . .cool, huh!"

I smiled and felt happy with my impromptu answer. Chad and I discussed before Jack was born about how we would tell the kids. We both felt strongly that we wanted the kids to come to know Jack first. That the matter of Jack having down syndrome was only part of who he is not the sum total or even a large part of who he is. We wanted the kids to all get to know him first and foremost as their brother.

As Owen got out of the car to go (late) to school he said goodbye as he always does to Lily and Jack, (Owen and Luke have always called Jack "his awesomeness or Jack amazingness") he collected up his backpack and said his goodbye's, "bye Rubby, see you later, bye mom, bye awesomeness Jack, we love you!"

That was all, same goodbye as usual. Days pass by and life continues much in the same way; Owen learned this week one more thing about his little brother. Now their nickname for Jack probably has even more meaning!

Yesterday he learned that Jack likes open mouth kisses.

. . .the open mouth kisses part is probably a more significant discovery.


Wednesday, February 8, 2012

Lean on me.

Sometimes in our lives we all have pain
We all have sorrow
But if we are wise
We know that there's always tomorrow

Lean on me, when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
'Til I'm gonna need
Somebody to lean on

Please swallow your pride
If I have things you need to borrow
For no one can fill those of your needs
That you don't let show

Lean on me, when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
'Til I'm gonna need
Somebody to lean on

If there is a load you have to bear
That you can't carry
I'm right up the road
I'll share your load
If you just call me

So just call on me brother, when you need a hand
We all need somebody to lean on
I just might have a problem that you'd understand
We all need somebody to lean on

Lean on me when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on

Lean on me...

As I was looking through pictures to post I noticed a constant throughout all the photos; Jack would always be looking at me. It's something that when we were in the hospital, in those moments that I never noticed; just how much he needed me.

Bill Withers song, Lean on Me came to the forefront of my thoughts. I can only imagine how scary those times in the hospital were for my sweet boy. Makes me sad to think of it.

The infamous Dr. Alkon with his favorite fifth floor resident and Jack.

Isn't this giraffe the freaking cutest thing you've ever laid eyes on! The ERISA group had it in Chad's office when he got back and the talented Brenda made the heart with a band-aid. Could you die! It now resides in a perfect spot in his room; once I disabused Lily of the notion that it belonged to her.

Removing the pace maker wires.

Some of these photos were hard to take and hard to look at. They show moments of suffering for our sweet Jack. Having the experience with Owen and Luke though taught me that when they are older they like to see pictures from their hospitalizations. See some of what they've been through I guess.

I'm so grateful that I was able to be there for Jack. We have a wonderfully supportive family that took over on the home front. Chad or I were able to be with Jack all the time thanks to my in-laws, my mom and help from friends. It was sad in the hospital to see room after room on the cardiac floor of kids there by themselves.

I am sure that not being able to be there is so painful to those parents. The nurses said that most of them have to keep working to be able to keep it all going. I noticed too that every evening after six the halls would be busier as moms and dads were able to be with their children. Each day there would be different volunteers that came and held babies, played legos, read stories, whatever. I thought what a great thing to do with your time!

While this isn't really my 'season' for volunteering in a hospital I mentally pinned this for something to do in years to come.

Joy. You want to know about Joy. This boy knows how to bring it. Open mouth, laugh out loud at the drop of the hat, joy. All day long. A story retold to me by the nurses, moments before surgery the OR nurses were all clamoring around this boy because he was just giving it all away. Cooing and smiling all the way back to his ears and down to his toes.

We leaned on our people to build us up, give us their strength and relieve us of our duties so that it would be possible for us to be there for our boy when he needed us most. I am just so dog gone grateful to have such a rich circle of family and friends that help us to do what needs to be done.

Wednesday, February 1, 2012

A new day.

No, I'm not rocking out to Taylor Swift in this moment. I am sitting in a silent dark hospital bed feeling love, gratitude and humility. I am sure that my words will not be able to entirely express these sentiments but I will make an attempt.

Tomorrow we leave the hospital first thing. Jack is better; all is well. But he isn't the only one who is changed for the better; this entire experience has forever changed me.
Photo on 2-1-12 at 7.51 PM #3
Change often gets a bad rap. It is looked at as something that we often unwillingly embark upon because we have no alternative. A push if you will; a gently nudge to do something that will help us grow. I find myself softening, I would never say that I was a hard person by any regard but I find myself looking at everyone with kindness in my heart. Compassion. Holding eye contact a brief moment longer, smiling more generously, taking moments with people who I maybe would have never noticed. These outward expression of kindness is simply a result of my inward feelings spilling out.

I hope this comes across in the true nature this is intended. I'm not trying to get up here and declare how wonderful I am. I hope you sense that.

This change; this softening is a wonderful feeling. Heartwarming is the best adjective I could probably use. I am so grateful for these feelings. Whatever small happiness I am able to share by virtue of this is minuscule in comparison with what I receive. I feel within me a broad sense of well being, of purpose. These feelings grow and I can almost feel my shoulders pushing back accepting them more deeply, a warmth encompasses and accompanies me.

In Proverbs it says, "As a man thinketh in his heart so is he."

Brilliant. You feel love and kindness for your fellow man then you are symbiotically filled up yourself. And that, that is what I mean when I say whatever kindness I give is minuscule in regard to what I receive. It almost feels like cheating. You do something for another; they feel better, but you? You feel ah-mazing.

Needing people, having to humble yourself and ask for help is hard for me.

No. . .no, um I don't need any help, I got this. I can do hard things all by myself; thank you very much.

But this time, with so much on the line I opened up. Begged for help from anyone who would listen. I asked the Target checkout lady who was admiring Jack to please pray for him as he was having heart surgery next week, just to give you an idea.

. . .and that single act of my humbling myself and asking for help began a monumental shift within. Without you, all of you, it would not have gone to the depth and breadth that it did. I asked you to pray for Jack, for me; give us comfort, guidance, safety and peace.

I have never had an experience that even touches what I have felt. The power of your prayers has been felt so deeply I cannot adequately express my thankfulness. I needed the comforter to accompany me in this difficult time. I anticipated this week being the most difficult trying time of my life. It hasn't been. Every step of the way I was so infused with the power of the spirit that fear and doubt crept away.

Troubling things would come up in Jacks recovery, I always felt a peace that things would work out. What a blessing this was! I know that prayer is powerful. That it works. That even in moments of absolute fear and panic there can be a gentle calm within.

You gave this to me. Through the generosity of your love and goodwill I felt what it truly meant to love your neighbor.

Getting better all the time.

Cue the Beatles lyrics,

. . .gettin bettter all the time-ei ei i ei ime. Better better beeettter.

Jack is getting better. Each day we are peeling away the layers of support. The respirator went first then the arterial line, the chest tube, the oxygen, the pacemaker, an IV line, the cerebral pulse, another IV line, and finally the IJ line. It's so much easier to hold him now as they're aren't any lines into him that if they get caught won't rip into him! Yippie! He still has the pacing wires but they aren't hooked into anything.

And. . .Dr. Alkon is happy! Trust, you want that man to be happy. Otherwise watch out! Nurses beware; if he doesn't think you're moving fast enough. . .you will be hearing about it!

For about 90% of the time Jack's heart beats in sinus rhythm, his heart rate has slowed to a more normal pace. Dr. Derby, Jack's surgeon stopped in yesterday and felt that things looked great. Thinking that if things continued we would be able to go home Thursday or Friday. So, looking forward to that. Haven't slept more than five hours in any single night. But had my five night high last night with six hours total combined! Whoot whoot!

Hopefully we'll be able to sleep once we go home. I anticipate I'll be checking his pulse and respirations on the hour.

. . .a couple of days back I talked about his mitral valve and how it was leaking more significantly than it was directly after surgery. It was the echo that showed this. Gary the technician a twenty year veteran of echo teching got the first results that showed significant/profound leakage of the mitral value.

Upon seeing these results Dr. Alkon was quite upset and pretty much set up shop in our room for two days. Talked to me about how this pretty much guaranteed going back into surgery and soon. About eight hours into this crisis Dr. Alkon decided to go ahead and re-do part of the echo himself. He got very different results. The mitral valve was only leaking minimally. He was still very concerned about the high heart rate but that is another story. This took going back into surgery off the table. Dr. Alkon blamed the tech, saying his technique caused the inaccurate reading.

He chewed out Gary and Gary held strong to his techniques. So, we don't know if it was a technical mistake that had us un-necessarily worried all day or if it was a miracle. With all that I have seen and been through I will never discount the power of prayer and it's life changing abilities.

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.

Ugh.

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.

Mmm-kay?

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.