And the people all said, sit down...

...Sit down, you're rockin the boat.

--Don Henley, "Sit down you're rockin' the boat"

Derek here as guest author, and it's getting past my bed time so this will be pretty short. Overall, Jay is about the same this evening. As Jen mentioned this morning, he had a few hours of a significant arrhythmia last night (ventricular tachycardia or v-tach for those of you who want those details) which stopped rather suddenly this morning. It appeared to stop when they were moving him to attach stickers that are used for the defibrillator (the paddles that are used to shock the heart back into rhythm). Either the movement or the threat of the defibrillator were enough to break the v-tach. I was just standing nearby when it happened. For most of the day, his rhythm remained abnormal, but it was tolerable.

This afternoon he went into v-tach again when they were moving him over onto his side. He stayed that way in spite of mega doses of drugs that should stop this sort of thing. When they began to talk about defibrillating him, he suddenly converted again. Apparently he got he memo, and fixed it himself. Again, I just happened to be standing there. This time he pretty quickly returned to a normal rhythm that was periodically interrupted by abnormal beats. He's stayed that way since about 6:30pm so the plan for the night is to not rock the boat. They are going to micromanage all his drug levels and electrolytes to try and keep in his normal rhythm to stay.

We still don't know why he's having these episodes of arrhythmia. They've done quite a few blood tests, an echocardiogram, consulted with the heart failure team, and the electrophysiology team (the heart electricians), but no one has a good answer. Actually, no one really even has a bad answer. But, as long as he maintains his normal rhythm, we won't worry about the why.

Time to crawl into the little twin bed (yes, both me AND Jen), and try to get some sleep. Hopefully, there won't be any middle of the night drama tonight.

Lovin', Touchin', Squeezin' ...

...each other

Journey - "Lovin' Touchin' Squeezin'"

Want the good news first or the bad? We'll start with good. This morning, they decided to let Jay wake up just a little and see how he responded. The sedative that he's on takes only a few minutes to wear off, and within 15 minutes, he was squirming a bit and trying to blink. (He's got goo on his eyes to keep them from drying, so blinking was quite a challenge.) And the best moment I've had in the past 24 hours - he squeezed my hand. Oh, happy tears! Then he squeezed Derek's hand on command and I've never been so happy to see those little fingers wiggle. He eventually moved both hands and both feet and moved his lips a little. He definitely seemed uncomfortable, so they bumped the sedative back up and he's happily back in lala land.

And for the not-so-good news. Around 3 a.m., his heart rhythm (which had been beautiful all day yesterday) began to get really ugly. So, to give you a bit of background, his heart is beating in that it has electrical impulses of a normal functioning heart. It is not squeezing like a normal heart or pumping blood, however. He has no pulse because that's created by the squeezing action of the heart. That pumping is being done by ECMO, which runs a continuous flow rather than a pulsing flow like the heart. (Y'all keep in mind - I have readers at all ends of the medical expertise spectrum. I'm simplifying here, so heart families/veterinarians/medical professionals please overlook the mild inaccuracies!)

During the night, the electrical impulses - the beat of his heart - got all out of control and his heart rate went sky high. While this would have been life threatening if he weren't on ECMO, his big ol' external heart and lungs did the job they are designed to do. Everything else stayed within acceptable levels, so that's good news within the bad. It stayed like that for several hours until Derek came in this morning. Apparently, he just needed his daddy. Well, that and the threat of using his pacing wires seemed to scare his heart back to rhythm. While his heart rhythm is NOT normal yet, it's significantly better. We're going to pray that it continues to recover and that his tired little ventricle continues to get the rest it needs.

Thanks again for your prayers and positive vibes. Let's hope that Friday the 13th is a lucky day for Little Jay-man.

Can you feel the love tonight...

...it is where we are
It's enough for this wide-eyed wanderer

that we got this far

-Elton John, Can You Feel the Love Tonight

I am in awe. I am absolutely overwhelmed the outpouring of love and support you all have shown through comments left on this site, facebook, email, phone calls. I have been teary all day (umm, understatement of the decade), but when I realized there were nearly 50 messages here, I just couldn't stop the waterworks. Thank you.

Nearly every one of you said you were praying for us - and it's a darn good thing because my prayers have been pretty pitiful lately. I can't get past "Dear God - Help us! Help Jay!" I must have said those words a million times today. I truly just don't know how to pray right now. But I trust that God knows what I need when I don't know the words to ask, and that the words y'all are offering up for us, the positive thoughts you're sending this way are making a difference. I know that we wouldn't be holding it together at all without your love.

All the docs keep saying that it's been a good day. I guess they have a different standard for "good" than we do, but Jay has been very stable and all his vital signs are steady. And that is good. He's heavily sedated and has not opened his eyes. But he is responsive to touch ... sometimes too much so. He's very sensitive, and even just rubbing on his hand can make his blood pressure drop below the range the docs want to see, so we're trying to "look with our eyes." (That's totally the kind of thing I'd tell him when he tries to touch breakables that are in his reach!) His coloring is good, and he's making loads of pee, so his kidneys are working well. But it is VERY hard to look at him with all the lines and tubes coming out. I started to count, but decided that was not in my best interest.

Tonight Derek and I are staying in one of the Ronald McDonald House sleep rooms on the floor. It's just a tiny room with a bed, but it is close enough to be able to get to his bedside in a minute, but far enough away that we don't have to hear the unending "beep beep" of the monitor. (Heart moms, you can hear it now, can't ya?!)

There's not much news about how he's doing - truly, he's just resting and giving his heart a chance to recover from a big surgery and a really traumatic night last night. We covet your prayers for his complete healing, and for our peace in the midst of chaos. Thank you for caring about our journey.

Heartache tonight...

Things did not go well last night after Jay's surgery. He was doing much better when I left around 10, but a few hours later, his heart began to fail. I can't even believe I'm writing these words.

They did CPR on him for over an hour, and then did a surgical procedure in the ICU to put him on ECMO, which is a heart-lung bypass machine. ECMO was described to me as "crutches" for your heart - it does the work of pumping blood through the body so that the heart can heal. His heart is beating again on its own, but it is not strong enough to pump blood through his body. They hope to begin weaning him from it in a few days, but they have told us to focus on what happens in the next hours, not days.

He's now in the cath lab where they are creating a small hole between the upper chambers of his heart. That will take additional pressure off the left ventricle which is currently so weak.

He's on major blood thinners, so bleeding is a significant risk - from the tubes and lines for IV, cath insertion, and ECMO canulas, but also a major risk of bleeding in the brain (stroke).

Derek was with him when he went into cardiac arrest, and he called me to come to the hospital immediately. The entire cardiac staff was around his bedside - I've never been through an experience more terrifying or heartbreaking. We were able to be with him for part of the night between the many procedures and tests. He is heavily sedated and I'm told he will not remember any of what happened. We talked to him and sang to him, praying our voices would bring him some comfort. One of the docs even let him take his cow lovey to the cath lab.

Please pray for him. Please pray for us. We are scared beyond words.

Take it...

...take another little piece of my heart now, baby

"Piece of My Heart" - Janis Joplin

(Note for those of you using feed readers, this was posted immediately after surgery, and then it somehow disappeared. I'm re-posting just to keep the story complete...)

Whew. The anticipation, the waiting, the worst of the worries are over. Jay made it through open-heart surgery like the little champion that we all knew he is. He has a nice shiny new valve, which wasn't our ideal outcome, but Dr. S was able to put it in the normal valve space which is very good. (Sometimes they have to put it above the old valve which can cause some additional complications.) Wanna see one in action? That's not exactly like his, but it's pretty similar and you can see how an artificial valve works. It's made of a carbon fiber material that's actually more similar to ceramic than to metal. And he won't set of any alarms when going through airport security.

He's currently in ICU and spent most of the afternoon/evening drifting in and out of lala land. He would wake up just long enough to beg for juice and then drift off by the time said juice was delivered to his bedside. He's had 3 requests - juice, watch Yo Gabba Gabba, and to go swimming. Anything you want, sweetie. Except it will be a while before that trip to the pool... Oh, and he did request that I hold his hand. Makes this mama's heart very, very happy.

Medically, he's doing very well but still has a long way to go. He's been dealing with "heart block" which means that his heart rhythm isn't quite right. The top chambers of his heart aren't pumping in time with the bottom chambers, which means he's got a lot of skipped beats. Like, almost every other beat. This abnormal rhythm (along with the fact the pressure inside his heart is vastly different than it was yesterday!) is also causing his blood pressure to be very low. They spent most of the day trying to address the rhythm and the blood pressure, and we're hoping that both improve with time. He has external "pacing wires" which are literally tiny wires that go directly to his heart. Those wires are just taped to his chest at the moment, but if his heart rhythm doesn't settle out soon, they can be connected to an external pacemaker to help his heart figure out how to clap along with the music. It was starting to settle into a better pattern when I left this evening.

Otherwise, he's doing amazingly well. He looked great when we finally saw him - a little pale, but generally pretty good for someone who'd had his ribcage cracked open. Truly, I can't thank you enough for your kind words, your positive thoughts in our direction, and your prayers. God is good - all the time.

It's the eye of the tiger...

...it's the thrill of the fight

rising up to the challenge of our rival

and the last known survivor

stalks his prey in the night

and he's watching us all with the eye of the tiger

So many times, it happens too fast

you change your passion for glory

don't lose your grip on the dreams of the past

you must fight just to keep them alive

-Eye of the Tiger, Survivor

(Regular blog readers - well okay just Mandy - sometimes try to guess what I'm going to use for my intro song ... betcha nailed this one!)

So, we made it safe and sound to Philadelphia. Luke did great on his first flight, and Jay was super stoked about the airplane ride (though he made it clear we were NOT riding on Jay Jay the Jet Plane). When we stepped into the airport, the overhead message said "Welcome to Philadelphia!" and Jay repeated it for the entire walk out to baggage claim. The dads had no problem along the drive and managed to stop only once for lunch/gas/bathroom break. Let me assure you that if we'd been traveling with them, we'd have required at least 2 stops for each of those tasks, adding many hours to the travel time. Our hotel is great and we have brought enough food to last us for a 3 month stay. If we measure how much we're loved by how much food you friends sent for our journey, we are very, very well loved. And may gain very much weight before our return.

This morning, we headed to CHOP for pre-op and meetings with the surgeon, cardiologist, and some additional testing. Everything went as well as it could have gone. It seems silly to say, but people at a children's hospital are really good with kids. They take the time to explain what they are going to do, let him see and explore the equipment, and talk with him about things that interest him. They really make being at the hospital as un-miserable as possible.

There isn't much new medical news to report. The surgeon, Dr. S., is fairly certain that it's going to be a replacement valve rather than a repair. While that's disappointing, we feel confident in his judgment. Jay's heart valve neither opens enough (stenosis) or closes completely (regurgitation). The way to fix a valve that is regurgitrant is to make it a little too small, and the way to open up one that is stenotic is to allow for a little regurg. (Nice word, huh? Nothing like a little heart valve puke.) So, the solutions to the two problems are, unfortunately, in direct opposition to one another.

As mentioned before, the main problem with an artificial valve is that he'll have to be on blood thinnners - coumadin. But talking with folks here really reassured me about that. He can still be active, and I won't have to constantly worry about every little bump and bruise. He'll bruise more easily, but he's not going to bleed to death from a paper cut. He can still play sports (though no football to Derek's mild dismay), but he'll have to wear additional protective gear. He can even play baseball as long as he wears a chest protector.

One thing that was slightly comforting news is that he expects the whole procedure to be 3-3.5 hours, while the other surgeon we met with indicated 5-6. This surgeon does this type of procedure more frequently, and we want to minimize the time under anesthesia and on the heart-lung machine. And of course, we want to minimize the time we have to spend torturing the chairs in the waiting room by digging our nails into the upholstery.

This evening, we headed out to do a bit of sightseeing and started our tour of Philly with the Philadelphia Museum of Art. Don't worry, we didn't take a toddler and an infant into an art museum ... we just pretended to be Rocky climbing the steps out front. And, like Rocky, we're ready to take on a big obstacle and come out on top.

Thanks to all of you for your prayers for our safety and for the difficult days ahead.

Tis the gift to be simple...

'tis the gift to be free, '
Tis the gift to come down where we ought to be,
And when we find ourselves in the place just right, '
Twill be in the valley of love and delight.

When true simplicity is gain'd,
To bow and to bend we shan't be asham'd,
To turn, turn will be our delight,
Till by turning, turning we come round right.
-Simple Gifts, Shaker Hymn

The days until our trip to Philly are getting short, and I won't pretend that it's not more stressful as the surgery date (next Wednesday - holy $#!+ approaches. But we've been trying very hard to focus on what a blessing this past month has been. You hear people say "every day is a gift" ... and you don't recognize that truth until something forces you to. I'll admit it - I've thought "Yeah, whatevs. I'll get around to enjoying every day just as soon as __________ happens." Fill in the blank with whatever - this pregnancy is over, this tough season at work is past, the kid starts sleeping through the night, the heat of summer lets up, I finally finish this project. But this moment is it - and it's hit us more than ever that we'd best soak it up.

Some of the simple gifts I've been thankful for lately:

• Impromptu, sanity-saving lunch with friends from work.
• Eating overpriced popsicles while Jay and his buddy ran around in the grass.
• Amazing country cookin' at the Foster family reunion. Love some potluck lima beans.
  
• Beautiful - and fun! - family portraits in the Rose Garden (like my new blog header?!)
• Tomato sandwiches
• Great discussions with 2 different friends on the big issues - life, faith, fears.
• Getting a pedicure with some amazing women that I love.
• Luke's toothless grin - that kid is freakin' adorable.
• Going out for gelato. Oh, Henry. How I love thee.
• Showing off the boys to their Peele Hall fan club - I'd like to pretend I won't do that when they're 30, but Miss Betty says it's perfectly parade them around. Forever.
• Cards and sweet notes from friends - your prayers mean so much more than you can know.
  

And on tap for tomorrow night - baseball! Jay's nursery was decorated in a baseball theme, his first birthday party was a ball game in our front yard, and his fave song is the "Old Ball Song" (better known as Take me out to the Ball Game"). So tomorrow evening we're going to celebrate pre-surgery as a family ... and our only question now is whether we want to hand with Muddy the Mudcat or Wool E Bull. And we're going to enjoy every bite of hot dog, sing every note of the Old Ball song in our off-key, musically-challenged way, and savor every second.

And Sunday - Welcome Philly. As hard and scary as it is, I'm going to try very hard to find those simple gifts there, too. These smiling faces keep me going:














(Amazing photos by Grow Photography - love her work!)