We'd Like You To Pray, But...

I watched the Saddleback Presidential Debate, and considering how badly Obama lost, I'm happy to know that Rick Warren was asked to give a prayer at the inauguration.

It's also entertaining to watch media types, out of boredom, dig deep and wide to somehow "get" Rick Warren. Just think if they had applied similar scrutiny to the candidates!

See, Rick, we'd like a prayer, but not a Jesus prayer.

2008 Reminiscing - Charter Communications

Charter is a classic case of choosing content and voice for this blog. I even put it to you all - do you want to hear about how bad Charter Communications is? About my over two hours on the telephone with them and the 12 different times they terminated the call? About their inability to explain why they had hung up, connect me to the previous consultant, or even consistently advise me on what they could or couldn't do for me?

Well, this article seems to state most of my thoughts nicely. Except to say I'm shocked there are three companies worse than Charter.

In my world there are businesses that will never get my money again. Charter is a proud member of that group.

Smile

 

Yet those who wait for the LORD Will gain new strength; They will mount up with wings like eagles, They will run and not get tired, They will walk and not become weary.

Whence The Blog?

How was Christmas?

Well...it's good to see Zoe smiling again. She's slowly falling into some kind of crazy sleep/poop rhythm that involves Jen and I never sleeping.

The Pastor at the church we went to Christmas Eve called the children up for blessing. So Zoe got a Christmas Blessing - over and above all of yours.

Can't keep the boys off the Wii.

I was able to see some longstanding blog contributors and spend time with family, warts and all.

Just when I thought we'd have a few minutes inbetween waves of work, it turns out another wave is nigh. So I'm back to working late into the night while I hold baby or else trying to get it done while Jen holds baby.

So many shouts out I want to shout, to all of you all for loving and supporting us, thinking of us in your prayers, for holding us up. When I get half a thought, I'll say more and be clearer.

A Little Song You Can Sing

Something I sung with Zoe as we danced around the house this morning at 5:

Zoe's here for Christmas..
Zoe's here for Christmas..
Zoe's here for Christmas..

(ad lib to fade)

Nor Does He Sleep

And in despair I bowed my head
“There is no peace on earth,” I said,
“For hate is strong and mocks the song
Of peace on earth, good will to men.”

Then pealed the bells more loud and deep:
“God is not dead, nor doth He sleep;
The wrong shall fail, the right prevail
With peace on earth, good will to men.”

But, They're Ill-Tempered Sea Bass

Many of you are wondering if Zoe's hooked up to a machine or got some kind of dripping device (not unlike the one from Austin Powers). The answer is No, Baby!

Zoe wears a patch of Catapres-TTS that lasts a week. It's a blood pressure medicine that will help her get blood properly to her body.

She's also taking Captopril, a medicine that a lot of heart patients take.

Zoe's still taking Prevacid, something she took before surgery to help with her reflux.

And...she's taking Lasix, stuff that a lot of heart patients take that helps all of the liquids exit the body correctly.

And...prune juice. For stuff that prune juice does.

So, besides getting pretty upset that she has to take all the foul liquid orally, Zoe doesn't really encounter much. No beep-beeping, no dripping.

And, she's pink.

Right now, she's in bed, and just realizing that her parents thought she was going to stay in bed.

Aidan Turns 4

Aidan turned four and had a whole bunch of fun with family. Uncle Josh, teeny weenies, a Madagascar cake. I think you'll agree.

Some Zoe and Jen Pictures

Zoe and Jen were holed up in this tiny room for over a week. They shared it with Chase and his mom. Good news...last we heard, they were coming home for Christmas, too!

Two Things You Told Me

As long as I can remember of my time here in Wisconsin, we've cut down our tree the day after Thanksgiving. It's a tradition we've continued as the GregBats.

When we lived in New Orleans, we were so poor that one Christmas, we waited until Our Savior Lutheran School got out and took the best real tree from the classrooms - the fourth grade one - and took it home.

It was one of those small ones, probably three feet high. At home we had a front window where we put the tree, so my mom put the tree on a desk, draped the tree skirt around the tree and off the sides of the desk, and decorated it. People driving by saw a tree. Inside, it looked like a tree to us kids.

You remember things like that when its December 21 and you haven't put up a single decoration and you're trying to figure out where to get a tree. It seemed so unChristmasy to go to a lot. And we heard lots were thinned out. On top of that, we were being global warmed to the tune of -10 windchills. Can't take kids out in that.

So there Teia and I were in the hardware store, which had a bunch of live trees in the back.

I don't know. They just do.

So we're picking out a tree and it reminds me of the desk tree, and how it just looked like Christmas. I let Teia pick out the tree, shelled out the overpriced amount for it, then swung the car around the back to pick it up. We had to lower some seats, and it was cold.

But this song came on the radio, and I thought of the desk tree and Zoe. And my Dad and you all. And Teia and all my kids. About Christmas and how a tree can't really be overpriced if its going to sit in the window at home, can it? I wiped the tears out of my eyes and drove home.

Your Love Is Strong
by Jon Foreman

Heavenly Father
You always amaze me
Let your kingdom come
In my world and in my life
You give me the food I need
To live through the day
And forgive me as I forgive
The people that wronged me
Lead me far from temptation
Deliver me from the evil one

I look out the window
The birds are composing
Not a note is out of tune
Or out of place
I look at the meadow
And stare at the flowers
Better dressed than any girl
On her wedding day

So why do I worry?
Why do I freak out?
God knows what I need
You know what I need

Your love is
Your love is
Your love is strong

The kingdom of the heavens
Is now advancing
Invade my heart
Invade this broken town
The kingdom of the heavens
Is buried treasure
Will you sell yourself
To buy the one you've found?

Two things you told me
That you are strong
And you love me
Yes, you love me

Our God in heaven
Hallowed be
Thy name above all names
Your kingdom come
Your will be done
On earth as it is in heaven
Give us today our daily bread
Forgive us wicked sinners
Lead us far away from our vices
And deliver us from these prisons

Home.

Zoe's home from the hospital.

Honestly, I was deep deep in worrying and planning and stress and feeling a lot of pressure as we tried to get things ready for Zoe and Jen's trip home. They'd never been to this home, not with us in it.

But I met an old friend at Walmart, someone I hadn't seen in years and years. As we caught up, I started to tell him about my life, about Zoe, about the big kids and about moving. About what it's like to never consider that your daughter will be with you at Christmas, let alone home from heart surgery.

As I was talking, I thought of what I said each time I saw her - as she was being carried away by the nurse preoperatively, purple, struggling to breathe...after surgery, being wheeled down the hall...as she was extubated and when she almost died that Sunday...

Come back to me, Zoe. I wasn't begging her. I was telling her sternly. Like when you tell your kid to come inside. Now. Or when you tell your kid to go out there and play hard. You come back to me.

So much just gnawing at me. As my daughter exhibits what she thinks of doctors who say her condition is incompatible with life, my father fights a similar battle now 7 years since he was diagnosed with cancer.

To see someone 9 months and 76 years old both fighting with the same abandon and the same stakes is stunning. Both struggle with some rudimentary functions we need to live. They are both teaching me so much about life.

I used to think life was a race. Now I believe it's a brawl. An all-out, grab-whatever-you-can-and-fight brawl against this sinful, broken place.

I said this almost 9 months (exactly) ago. Go home and hug your kid. And if you don't have a kid, go home and hug your dad. And tell them you love them and thank God they are there, in your arms.

And I pray that everyone, everywhere takes a minute to give thanks for strength in our fight.

Saturday Homecoming Planned

Jen says that she and Zoe will be ready to leave tomorrow in the early afternoon. I'll keep you posted - including pictures of the mammoth snow that hit us today - and the snowstorm hitting us tomorrow.

I'd like to give a warm, enthusiastic thank you to Jen's parents for all of their assistance. They helped with Zoe's big brothers and even found time to help things settle over here. We're all grateful for their love and sacrifice.

Home For Christmas?

Jen says that Zoe is doing well with her numbers, and has calmed down from a long cry. "renal is 56 heart is 120 blood pressure 87 and O2 94...all that looks great."
We're still hoping to bring her home tomorrow.

keep praying

for all of us batiansilas as we try and sort our way through everything.

so close.

"We're so close...," Jen said four days ago. We are. We're so close to being able to leave Children's with Zoe but we're still waiting for everything to line up. The physicians are being cautious and methodical, which has gotten Zoe to this point. So...not today.

Supposed to snow around 12 inches tonight. Hopefully...tomorrow?

Chess

So now we're playing chess with Zoe's numbers.

Zoe's operation was successful in that it sent blood to the lungs - blood that wasn't getting there preoperatively.

But because it's a man-made fix, the doctors have to tinker with medicine to ensure the blood gets past the lungs to all the different parts of the body.

So, that's why we keep referring to a renal stat. Renal stats show that blood is getting to the kidneys, but the numbers dwindle when Zoe gets upset.

Yesterday, the doctors sedated Zoe to give her an echo. The sedation caused problems - much like earlier sedations - in that it wired Zoe up and made her agitated and jumpy, difficult to relax. Her numbers haven't been very good, but doctors are associating it with the sedative.

Zoe's still a little restless and has been up basically on the hour, but they're still attributing it to the sedative.

Slowly, the docs are trying to remove o2 and patches and things from her so they can send her home. She waited all day long for rounds to hear what baby's status is. Jen left the room for a minute, and missed them and so they'll come back to talk to her.

Soooo...we're thinking Thursday? Maybe?

P.S. for those of you not in Wisconsin, we're expecting a foot of snow Thursday night.

Truth About Blogs II

Jen's advice: make sure we don't kick people for commenting. Everyone commenting has good intentions.

Good advice.

But it's the truth about blogging. We write and respond to that person's writing. I hope no one here is thinking anything past a moment of disagreement and a cross thought.

Feelings get hurt and people disagree. But we all get up and move on. We learn more by dissent than agreement, if you ask me.

I am honored by all of your support. And dissent.

She'll Be Home For Christmas?

Please send snow and numbers that plateau and a blue eyed baby under the tree...

Doctors have Zoe on a medicine patch. At first she was on a 1/2 patch, but numbers would still dive too low when she was upset. Now she's on 3/4 patch. Hopefully this will get her to where she needs to go.

They've scheduled a echo tomorrow and Doc Frommelt is trying her hardest to make this a special Christmas.

I held Zoe tonight after she oinked down a bunch of formula and she looks pretty much like a kid. she has this kind of waving thing going with her right hand...a little like ET and a little like she's doing a Jedi mind trick on you. I'll get a video and show you soon.

Now, Amy Hunt Is Ripping On My FEET!

So someone named AMY HUNT is ripping on my feet!

Here's her comment:

"Greg, your feet are hairy!"

Great. Thanks alot, just kick me when I'm down, AMY HUNT.

Look, just because my feet look like this:



...doesn't mean that AMY HUNT has to pick on me. They're not that bad, right?

The Truth About Blogs

Blogs are a strange revolution in communication. They demand honesty and voice. They are a thoughtful diary, and the audience can tell if a blog is honest or not.

The success of blogging over traditional media is that people enjoy the personal nature of them. They want to hear a human.

Then again, when you write human things, you sound human. You miss points or are emotional about one thing or the other.

I think Psalms was a little like a blog. Psalms 3:7 says, "7 Arise, O LORD!
Deliver me, O my God!
Strike all my enemies on the jaw;
break the teeth of the wicked."

Was the Psalmist advocating or requesting physical violence? What good would breaking teeth do? Maybe the Psalmist should have thought of what he was going to write before he wrote it.

I've encountered that same scrutiny with the blog. I'm NOT a Psalmist. I am just writing down thoughts and people are reading them. I have not asked anyone to read them and I don't honestly care if people do. For some people, this blog has been a blessing. I expect that my thoughts at times will create disagreement or dissension, but that's the nature of thoughts.

So...if I wanted to start a campaign against a teacher, or a doctor, hospital, or any entity, I would name that teacher doctor or entity and begin a focused campaign against them. My blog isn't a campaign against anyone.

But I get comments like this one:

"Maybe the teacher would be more considerate if you talked to her first, rather than broadcasting your issue on the internet...."

All I can say is: this comment is silliness.

1. I'm not broadcasting. Someone has to physically put an internet address in their browser to get here. If anything, I'm narrowcasting. I'm not ABC. I'm not CNN. I'm a guy writing a blog.

A. And if I wanted to make a stink on my blog, I guess I could. I could name the teacher's name, name the teacher's phone or email, name the high school, explain the class, scan and show you the homework. I could give you her home phone. I could provide pictures of the teacher in case you see her on the street. I could change the name of the blog to "Teacher X - A Threat To Humanity" and make googling her name populated with awful links.

2. I was writing about the issue. I was writing about the feeling. The exhausting feeling of having to tell everyone a story that makes me tired, let alone the tiring nature of having to retell it. With Charter Communications, I had to tell over 13 people that my wife and daughter were in the ICU.

3. I'm tired. If I can sum up the entry in question, this entry, my silence over the weekend...here you go: I'm tired.

I'm tired. I'm tired.

I'm tired and there is no end in sight. I'm tired of my children being everywhere, not seeing them. I'm tired of a fractured home. Tired of trying to communicate with Jen by phone or messenger because of of the communication challenges. I'm tired and so when I see comments like this:

what about those little boys...i bet they miss their mama and baby sister? i am praying all your kids know they are specially loved by God! and that we are praying for them too

I just throw frustrated hands in the air. Is the commenter wondering about my boys or criticizing my entry because it didn't mention them?

Of course I miss my boys. Of course I'm grateful for their grandma and grandpa who is going above and beyond anything imagined to care for them and make sure they feel safe and loved. For their sacrifice, I owe them a debt I know I'll never be able to repay. But, my boys. Of course they're suffering a strange life.

I wrote an entry about the oldest three kids because their life is so bent out of shape right now. That was not meant to contrast their life versus their brothers' lives. It was a feeling, a peek inside me...a ... blog entry!

I know...if you're blogging you have to have a hide of steel. I have to learn to let comments be comments. The blog is working if you all are moved to write back. It's blogging in its purest form.

But comments evoke feelings too. Which create...more blog entries!

The Valiant Ones

From the four inch cut in my daughter's chest to the piles and piles of packed boxes inside my front door, it's easy to say my life isn't normal.

I remember my senior year. I worried about seeing my girlfriend, paying for prom, playing time on the basketball team. Where to go to college.

Teia's senior year: she's wondering where she's sleeping. If her sister will die. If she'll see her dad. What she should pack and what she should throw away.

The truth is, I have toyed with the idea of pulling them out of school so we can just manage this troubled time. But they love school, their friends. Kellen needs basketball.

Last night I got home at 9ish. Teia was packing dishes and making snickerdoodles. Isabel was packing Jen's closet. A typical school night.

So when Isabel's teacher told her she was downgrading her for being late with homework - homework late in part because we didn't have internet for days - I just deflated.

I guess we can take pride that Isabel's teacher figures Isabel's life is so normal that she should suffer the same consequences as a kid with a normal life. My kids are living valiantly, selflessly. I am so proud of their ability to appear like any other teen.

But I'm also saddened that her teacher chose not to walk with Isabel on this. Izzi's a good kid, a smart kid. A pretty good student. In one of her blog entries recently she described how "useless" she felt in the face of Zoe's trials.

Me too. But I wish to goodness that I could bear this instead of her. That she could worry about cell phone minutes and Friday's date instead of all this.

I'll try and write to the teacher, but pray for these kids. The world they know is different than the world many of us grew up in. It's been the strength they've found in faith and the same fighting spirit their little sister shows you that has gotten them through. I just hope I can get everyone to see that.

Too Cozy??

So Z is STILL sleeping. I think it's safe to say that Zoe has never felt better in her life and is taking full advantage of that!

Heart- 118
O2- 95
BP- high is 95
renal- 60

more details from the 4th floor

So, the doc said "I will open this lung by tomorrow!"
Yep...he did. The lung is fixed.

Then the renals and blood pressure went bad...

Doc ordered Renal Ultrasound- "Kidney function is great!"

Doc said- "Giving her a good old medicine...clonidine"

10 minutes later: BP- high of 104 (was 126)Renal- 56 (was 38)

20 minutes later: BP- high of 98! Renal: 63!

PRAISE GOD and THANK YOU for prayers!!!

We like our Dr Rohit :)

FYI- Still sleeping so cozy! Please continue prayers for good numbers.

Good Day...thank you God

Healed

Lung - reinflated. Whole again.
Kidney - looks great.

God, in your mercy, you heard our prayer.

quick...

renal ultrasound is going on right now!

PRAY!

Prayer change!

OK everyone...the lung is looking MUCH better! (Almost "normal") Go God! However, oh yes there is a however! The renal numbers are back to not looking to good. We are now thinking there is more of an issue with blood flow because of kidney vrs. the heart. They are going to get a renal ultrasound to see what really is going on in there. Please pray that there is an answer. We are SO close! All other numbers and looking better and better and she eats full feeds, does the potty stuff well. This seems to be the "it" factor. So PLEASE pray for the kidneys and for an answer.

Good News

Jen must be liking progress because...she left the building!
Yes. She went to Ethan's Christmas program. Leaving me at the helm.
What's not to like? Renal stat is great. Sats, a little high but very good.

Dr. Rohit says he didn't like the X-ray...at first this scared me. But he was saying it like he was taking this lung thing on as a professional challenge. Like, say you were me, and I was waiting for my opponent to dribble because I knew how to handle him.

Like that.

He says - with the treatments he is recommending, (boldly, which I love) he'll have that lung issue solved tomorrow!

Go Dr. Rohit!

Where Does Your Husband Work?

That's what the lady in the adjoining room asked Jen as she was getting a massage, courtesy of Mandi and Erika. Jen said some people from my work had set her up.

It's Avicom.

Dr. Frommelt Remote

Dr. Frommelt called in on her day off, just to check in on things. Yesterday was a frustrating day because Jen was hoping Zoe would relax, and she just couldn't.

Dr. Frommelt was able to listen and prescribe some Benadryl, which began all the relaxation we're experiencing now. It just took something to knock her off that plateau.

In Which The Blogger Loses His Internet

Long story. I guess, for those of you out there, if you want to see me rant, I will gladly give you a blistering rant on Charter Communications and what they have done. So, if anyone wants that and then can compare/contrast to our measured and thoughtful responses to what's been happening here at Children's...just let me know.

I think i'll have you vote on it.

So I lost my internet at home.

And I can't tell you goings on. Sooo sorry. I missed you guys.

Zoe is doing great. Her right upper lobe of her lung is still not great, but her numbers are very good. Doctor Rohit says they are going to go through a delicate process of tinkering with meds to get her oxygen saturation correct. He also explained that studies have been done indicating that lungs do this almost within 1/2 hour of intubation. So...this is common.

So not true...

To those who think that we are not appreciative...

There have been several posts naming just a few of the many wonderful people who have been here taking care of Zoe and giving her the best they've got...

Frommelt
Tweddell
Elliot
Beth
Musa
Doug
Donna
Hagen

These are just a few- Make no mistake, we went through some VERY hard times here. Honestly, the heads of the departments were far more upset at their staff than us...You go through so many emotions when it's your child's life on the line...good and bad. I think we have been very clear at showing you what events are occurring and our emotions through those events. Children's has truly been amazing with what they have done, and when things happened that honestly NEVER should have happened, it was corrected immediately.

We thank God daily for the staff at Children's.

Hello from the 4th floor!

Yes, that's right...we are back up and doing better than ever! I am still restraining my happiness a bit, but our little Zoe is quite stable right now sleeping away in her bed.

Heart: 125 O2: 99 Renal: 70

Thank you God for today and for the many praying for us and our little Z. My heart is filled with so much emotion, that I don't even know what to do with myself! So I sit quietly and pray, and hope and watch the numbers...and for even a brief moment, I let out a little joy.

God's blessings on this peaceful night- Jen

The First Bottle

Zoe downed her first bottle in minutes. She has spent the whole morning begging for some food. She was upset that she couldn't have more.

Can I, just for a minute, say

TAKE THAT! CAN ALL OF YOU WHO HAVE TOLD ME ABOUT ZOE'S EATING PROBLEMS FOR THE PAST TWO WEEKS SHUT YOUR CAKEHOLES?

Thank you. Now, back to your regularly scheduled blog.

Uncle Josh Does Hollywood Part II

Josh. Hockey?

Hotel PICU

Jen's almost at 14 days at the Hotel PICU. She slept for a bit last night on her bed.
For the first several days, she was cleaning up in a sink until Nurse Beth noticed and got her a Parent's Shower pass.

Jen's here because she loves Zoe, because she knows that Zoe needs her here, and because she knows she was instrumental in the two times Zoe was near death while here.

Encouraging Observation

Is that right now, Zoe is lying on her side and sucking an imaginary bottle. She's always loathed nuks, and she wont' take one now. But it's good to see she hasn't regressed (like the nurse on the 4th floor told us a week ago) and that she still remembers that particular integration of systems that we call the suck reflex.

No Doubt About It

Josh had better wardrobe. Really? A Brown Sweater?

Zoe and the Hazy Lung **Updated

It's a sequel. In Zoe and the Heart Surgery, Zoe faced unknown foes and a strategy of speed, using raw courage and strength to breathe and stay alive.

In this episode, Zoe faces an old nemesis - something in her right lung. One nurse called it "collapsed" in the upper right lobe. Infection? Cultures don't bear that out. What is it and what is going on? Will our hero defeat the unknown even if it LURKS IN HER OWN BODY?

**Dr. Frommelt snuck in to discuss my/our observations of Zoe's progress. She was particularly interested in the success of a different group of medicines used to calm her down. She was excited to find out that Zoe was extubated and explained that reinflating the upper right lobe is a common issue for little kids because of its location.

The collapsed lung attracts fluid which welcomes infection. While one does not cause the other, they are often seen together.

Dr. Frommelt says that with time, different positioning (something unattainable during extubation), and just increased strength, Zoe should be able to reinflate the lung. ***

Tune in. We're waiting for rounds in about an hour.

Sometimes, They're Wrong Part II

This is Brianna Botts. Her mom is keeping track of her growth and progress through now, her 19th month. They, too, were told she'd die - in 24 hours.



This is Annabel. Annabel has her struggles but she's with us.



Jen and I wonder if a parent was told that yes, they are pregnant with a child which has Trisomy 18, and yes, it is rare and the majority of kids don't make it...but if they were told about Annabel or Brianna or Zoe...shown pictures of those girls..what would they decide? What about you? Would you join the other over 99% of parents and abort? Join with those medical professionals who deem them incompatible with life?

When I Say Secretions, I Mean Like Willy Wonka Secretions

Zoe while INTUBATED, exhibits a familial gift to blow bubbles out of her nose.

Time In The ICU

Kind of goes like this...

EXTUBATE. NOT INTUBATE. EXTUBATE.

EXTUBATION COMPLETE.

Zoe's lying rather comfortably in mommy's arms. The ever-present beep beep and tubes accompany, but there she is. Maxing. Relaxing.

The doctors will keep on eye on her stats and also periodically use a high flow of oxygen through a mask into her lungs to make sure they are working ok.

Dad tried to hold her and did ok, but Zoe's still a lot traumatized. Mommy says she spent her first several minutes with her hands shoved in her mouth, defensively trying to keep the stupid people from shoving stuff down her her throat. (Zoe's words, not mine.)

The New EXTUBATION Schedule?

It looks like we might still try to extubate today. ICU is still waiting to see some numbers and how they work with other numbers and different medicines.

FYI

I guess to some of you it sounded like I left seven of my children all night for a rock concert, swung by Zoe's room for the rest of the night, then hustled home to continue my role as an less-then-attentive father to my kids. That didn't happen.

I'm a pretty good dad. You can ask around.

zoe's uncle does hollywood

Zoe's Uncle Josh was asked to sing at the Christmas Tree Lighting in Hollywood, California. He opened for American Idol runner-up David Archuleta and Teia found this video of him performing. Honestly, the audio is so bad that the only reason I'm showing you this is that no one we know took the video. It's just youtubed like...like he's a rockstar by someone who is obviously digging his chili.

Holding/Held

I went to see my friend Longhair play with his band last night. I only caught part of it but that's what you do when you have been held like I have. Avicom - the people there - have worked so hard to hold Zoe and the rest of us up. They are the slippers on Jen's feet. They are the food in our refrigerator. The texts of love and support.

Oh, and the band - "Act Your Age" was really good. Ok, I know Longhair, and he's way too nice to be in a band with lyrics that angry, but that didn't mean that he wasn't terrific.

Then I went to Children's to hold Zoe's hand. The nurse said that Zoe might get anxious and then they'd give her something to calm her down.

For those of you who have been reading this a while, you know Zoe and I tended to spend a lot of 12-3 am together preoperatively. So I held her hand and talked to her and mostly we just kind of stared at each other. Her grip is intense, so tight that at times I'd pull my finger out and get the circulation back. Sometimes she'd hold my finger with both hands.

The whole time, she was chewing and chewing at her tube. I think it's because she's getting food through a tube and since her tummy is full, she thinks the chewing is making it come. But regardless, the chronology of activities has been chew chew until you get very very frustrated and then lose it. Then they sedate you, you wake up, and you start all over.

So for that hour and half, we didn't get to despair or angst or elevated heart. Just staring and talking.

At 2:30 I went to talk to Jen. After some minutes, I heard something and moved to see Zoe crying silently through the tube. Face smeared with sadness. The nurse came in and sedated her but now...now I think she thinks like me. She belongs home. And she has one. We're ready to go home.

Meet Ella

My brother's newest addition...

Zoe Keeps Chugging Along

So if you asked me today what I think, I think Zoe is doing better than before, which means she might be better than she's ever been. Her heart works. Her skin is slowly getting pink. She's intubated but her breathing is actually stronger than the vent. She held my hand today and maintains her Kung Fu grip.

I'm not sure how much longer she'll be intubated. Docs say they still see something in her right lung, but aren't sure if that's tube position. I have no idea what that means.

I've told a lot of you how proud I am of my daughter. She isn't surviving. She's fighting and winning. She's strengthened by your prayers, blessed by our Father, living in Grace.

Dare You To Move

Got a few questions about "Dare You To Move." It's a phrase from a song by Switchfoot. The song is a call to live in get up off the floor, take off your grave clothes, and live. Walk in grace. Move.

It's been an anthem of mine through a life filled with some really bad, life altering decisions. The Bible says, "If the Son has set you free, you are free indeed." If you believe that, then you must live it. Live like today never happened. Forgiveness is right where you fell.

Dare You To Move
by Switchfoot

Welcome to the planet
Welcome to existence
Everyone's here
Everybody's watching you now
Everybody waits for you now
What happens next?


I dare you to move
I dare you to move
I dare you to lift yourself up off the floor
I dare you to move
I dare you to move
Like today never happened
Today never happened before

Welcome to the fallout
Welcome to resistance
The tension is here
The tension is here
Between who you are and who you could be
Between how it is and how it should be

Maybe redemption has stories to tell
Maybe forgiveness is right where you fell
Where can you run to escape from yourself?
Where you gonna go?
Where you gonna go?
Salvation is here

I dare you to move
I dare you to lift yourself up off the floor
I dare you to move
Like today never happened
Today never happened

We Like Doug

The resident.

Because when he switched back over to our side of the floor after a few days away, he noticed that the xray that had been scheduled six hours before hadn't happened. He talked and listened to Jen.

The tube isn't too deep inside her. She's just been very uncomfortable. Jen was able to help Zoe do a whole bunch of pooping and a nurse noted that her intubation tube was position incorrectly.

Hopefully this all means a more peaceful baby. There is talk of extubation tomorrow. We'll find out.

Lessee. We've Had Blue, Pink...Now Yellow

Zoe has turned yellow on us. Her internal organs went through some shock with her last episode (Sunday's Funfest). Tests show they're working ok, and on their way back, so this is apparently just a bump in the road.

Bump. Bump.

The goal is to get her very stable and numbers good, slowly, carefully wean off the vent, and then extubate. We don't necessarily hear Dr. Musa say extubate tomorrow.

Jen says that her most recent chest x-ray shows something, so Jen would just as soon leave her intubated.

Which sucks. I'm very very bad at looking at my kid hurting or restless or fidgeting with the tube. I have to take a breath before I just pull everything out and take her home.

Fentanyl Questions

Dr. Musa says that Zoe's uneasiness is a reaction to her vent, which wasn't at a good setting. She says that airflow problems caused Zoe to be uneasy, and that adjusting the vent will make her happier.

Beth, Zoe's nurse, had told the doctors on rounds that she saw baby's lips smacking, the discomfort, the hand movements that she thought was withdrawal.

Dr. Musa disagreed.

My big sis sent me this. I instant messaged Jen. Jen just messaged me to say that Zoe was extremely uncomfortable and crying. Jen was working hard to calm her down. Finally, Jen got her to rest...with morphine.

That's what you use to start weaning someone from a powerful opioid. So perhaps it is Dr. Musa's new vent setting - or perhaps its withdrawal. We'll have to wait to find out.

Withdrawal?

Zoe's fever is down, but some of the folks here think it's down because she was given sedatives again. So she might have become a little dependent on the sedatives, which would cause the fever once they are removed from her system.

The nurse this am says the fever, in her opinion, was caused by agitation, not infection, because it's down now that she went back on sedatives. We're waiting cultures to confirm.

Zoe is actually trying to cough through the tube, which is a great sign. So on we go.

Find Rest

5 Find rest, O my soul, in God alone;
my hope comes from him.

6 He alone is my rock and my salvation;
he is my fortress, I will not be shaken.

7 My salvation and my honor depend on God [a] ;
he is my mighty rock, my refuge.

8 Trust in him at all times, O people;
pour out your hearts to him,
for God is our refuge.
Selah

Psalm 62:5-8 (New International Version)

help

help zoe with your prayers. and jen and me as we again ride this awful rollercoaster. zoe's fever is up to 39.2 celsius, 102.56. They're trying to give multiple sedatives to bring it down. And morphine.

Home

Home and eating dinner at the table (on paper plates, but...home). Salads for everyone - everyone but Zoe and Jen, who we pray join us soon - and some playing. Running and jumping on the furniture until you're caught. Fighting over chores. Pudding and Cool Whip for dessert. Home. Bedtime and prayers and long sighs about school. Home.

When To Extubate

Jen's hearing whispers and talk about extubation. While Zoe's stats have been very good, her temperature is as high as 39 degrees Celsius.

Our fear is that the fever is a sign of infection, and that we'll be going down the same path we went before.

We're scrambling because we don't really know any doctors to call for decent advice. But we'll try to get answers as soon as we can.

Big Eyes

Zoe was up from about 4 this morning until after 7 ... just looking around. She can't talk or grunt with the tubes in her mouth but she's obviously trying to acclimate herself with the world.

The doctors have completely stopped giving her the Fentenyl, the sedative, so now she's operating with pain relief medicines...and more awake. This is the most alert I've seen her since she's been in the hospital.

Dethickening The Heart

Zoe's latest ultrasound shows her heart is not as thick as it was pre-surgery! Ummmm. This is the best news you have received in a while. Believe me.

**Wait. In case you don't know what thickened heart is, its a congenital heart disease that happens...no one knows why or how or what to do with it.

One of the biggest reasons we chose the shunt is the doctors were concerned about Zoe's "severely" thickened heart.

Now read the first paragraph again.

tired

mom and dad are tired. and we might have another week of this ahead! zoe is (thankfully) getting a ton of rest. she certainly deserves it.

The Reason God Let Jen Sleep

I stayed up most of the night with Zoe. I told Jen I'd wake her at 3 but I really had no intention of doing that.

While Jen was upstairs, a little boy in the room across from us was called home. He's a little button, and doctors have been working on him intensely for hours and hours.

His mom experienced the anguish you can never imagine. She mourned her son's loss, calling out "Oh my baby!" over and over again, and , "No!"

A nurse came to shut our doors, but even through our shut doors and her shut doors, I heard this mother struggle and stagger and cry out.

It's not my story, and I never want or wanted this blog to be painful or hard to read. But it's echoing in my head still, so I thought I'd tell you that we live in this broken place where there is no hope outside of Jesus. God send angels and people to console that mother.

The Great Connector

ATTENTION BATBLOG CUSTOMERS:

Amy Hunt, my sister Deirdre wants to get in touch with you. Can you comment back with your email so she can reach out?

More Zoe Update

Dr. Musa just had a very good conversation with us about Zoe. She said there IS infection in Zoe's trachea that will be treated with antibiotics.

Dr. Musa said that they will move slower because removing her from the tube was tenuous before. That might be because of infection, or her breathing, or both.

We wanted to establish that Zoe didn't have feeding problems before, and pretty limited breathing issues. We keep hearing people saying that Zoe had those issues as persistent or pre-surgery.

Dr. Musa said that while Zoe ate before, she didn't eat enough, evidenced by her small size. Given her size and age, she would be classified as someone who isn't eating well.

It's a good point, but it means that ignorance is our fault. We should have known our physician was giving us bad advice and disobeyed it with the correct tactic - feeding her more calories and more food (directly the opposite of what our pediatrician had advised).

Dr. Musa's point - and I have deep respect for anyone speaking intelligently from their heart - is that a new baseline has been established. Zoe, with a functional heart, with an intubation tube, post-surgery. None of those things have happened before.

And the new baseline might not include bottle feeding. Or breathing without assistance like before. We'll have to find out.

Low Cardiac Output Syndrome

We're listening in on rounds. Elliot said earlier this AM that "Slow and steady wins the race." Sounds like that's the new direction here.

Our guy Doug is giving his recommendations to the rounds before the two attendings - Dr. Musa, who was here yesterday and all weekend, and Dr. Gudousky, who is in today.

Doug says Zoe showed "Low Cardiac Output Syndrome" yesterday, and presented his plan, it sounds approved. No extubate today. Dropping the amount of vent usage so that Zoe has a bigger control over her own breathing, while still vent assisted.

Cultures show no infection.

They will start to reduce the sedative significantly, and address Zoe's pain concerns with doses of pain management.

I'm in on this strategy. I'd like to see Zoe a little more responsive and lucid and in control, with two good lungs, before extubation.

Updates coming soon....Doug and Dr. Musa will return to go over my notes.

Snow Day

It's just been announced: NO SCHOOL for Zoe's big brother and Sisters. Snow Day!

49 States

Almost 15 percent of the Batblog's new visitors are from ...California. And no one from Vermont has visited the blog at all in the last month. But Hawaii, yep. what a ride. If anyone would like to try to make any sense of the blog's statistics, have at it.

What If You Were A Junior In High School

And your little sister was bouncing in and out of heart surgery and the ICU? Izzi's blog is pretty raw and honest. I love this post. C'mon Zoe. Let's go make a snow angel.

3 AM Suction

Nurse Kate and another helper suctioned out Zoe at 3 AM. And so I came after them and held her hand and talked to her a bit. Zoe's got the extra-strong KungFu grip.

I went and played her a little Robbie. Cuz it's me and Zoe dancing in the ICU and it's 3 am and we're still alive.