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.

Zoe=Cozy

Zoe is snoring away. Sleeping off the horrible pre-op 48 hours. Sleeping off the op. Sleeping off the horrible post-op 48 hours.

Snow

Just so you all not in Milwaukee are aware, we're expecting 4 inches tonight and 4-7 inches tomorrow. Of snow.

Back on March 22, it snowed too. Something about major holidays - born near Easter, surgery near Thanksgiving and snow. Some kind of mysterious parallel.

Beep Beep. Beep.

Seven different things providing different medicines. A vent. The renal monitor and then the big master screen showing all the stats. A merry orchestra of beeping and honking that will torment me for days to come.

In the center, a little girl lies. She won't shut her eyes. She dozes off, snores, but she can't shut her eyes.

This Broken World

My friends Greg and Sara commented on the blog. They've had to face how broken this world is.

We are all staggering through this sin-ridden place towards its end. Enemies in occupied territory. Come, Lord Jesus.

Naive
by Chris Rice

How long until You defend Your name and set the record right
And how far will You allow the human race to run and hide
And how much can You tolerate our weaknesses
Before You step into our sky blue and say "That’s quite enough!"

Am I naive to want a remedy for every bitter heart
Can I believe You hold an exclamation point for every question mark
And can I leave the timing of this universe in bigger hands
And may I be so bold to ask You to please hurry?

I hear that a God who’s good would never let the evil run so long
But I say it’s because You’re good You’re giving us more time, yeah
‘Cause I believe that You love to show us mercy
But when will You step into our sky blue
And say "That’s quite enough, and your time is up!"

Am I naive to want a remedy for every bitter heart
Can I believe You hold an exclamation point for every question mark
And can I leave the timing of this universe in bigger hands
And may I be so bold to ask You to please hurry?

Am I naive...
Can I believe...
And can I leave...in bigger hands
And may I be so bold to ask You, to ask You, to ask You

How long?

Renal

Erika wants me to explain what "renal" means.

Renal is a sensor on the kidney, tracking blood flow and oxygenation to that organ. When the number dives, the body is deciding to take care of the brain and heart first, and is choosing not to send nutrients to that organ to help the heart and brain.

So...now that it's 94, it means the body has enough good stuff to share with heart, brain, kidneys...and beyond!

Chest Tube

Elliot was draining her lung. 75 CC removed and a tube still there draining. Think she needed some help there?

Let The Healing Begin

Stats are great. Again for comparison, Renal was 14 when she was brought down to ICU. Now it's 94.

Sleep, baby. Her eyes are open and I think she is still not trusting the whole letting go and relaxing thing.

Nurse says she doesn't think intubated long. She and Hagen even said this is just a setback. What do you think?

Someday, I hope Zoe can tell you herself. How's that for hoping?

a parent's plea

We spoke to Dr. Hagen about our plea for a consistency of strategy. We felt confident with direction at the ICU but felt like what was happening in the patient room was not as consistent or rooted in the same facts as our findings and experience from the ICU.

He listened, was kind and I"m hopeful will take our advice.

And P.S. , Dr. Hagen has been in our room a ton. He's a good man.

Elliot

saved Zoe's life. Jen saw her numbers crash and her throw up green. And the nurse saying they would wait until rounds to decide what to do.

Elliot came up just to check in. If you look here at this post from the day before surgery - it seems like last year - you'll see Elliot was prophesying his role. It was in God's hands. And Elliot was going to be used by God.

He saw the baby and scrambled things to get her up to ICU.

visitors

pastor dorth was here, being a Christian friend and a pastor. Maziarkas here to say hi. Sweet wonderful cloud of witnesses.

a quick emphatic note

please

never think i'm not flabbergasted, stunned, moved by your prayers and support. i can only tell you that if there is a shred of energy in me, of hope in me, it's your prayers coursing through my brain.

it's all we have. it's not a bad thing to have.

slow stabilize

renal stats this am - 14. Now - 70.

Let's make sure kidneys are ok. Liver ok. Slowly weaning from epi.

Snow is falling outside...big flakes curling like the night Zoe was born. I'm telling you that if i wrote this story into a script...including the big flakes of snow, it'd be quite a tale.

ICU

Went into ICU to see our pink baby lying back. Dr. Hagen told us that she had an episode and started to tell us some things that not only we knew, but we told you about.

But he didn't know about the green spit up.

They are sedating her and looking at organ function to make sure it's ok. LIver might be congested from infection and making sure that flow is ok. Ultrasound to look at liver.

She needs to relax...she's not liking the intubation.

So, antibiotics. And stuff to make her heart pump but that seems to be ok now, so slow wean off that.

She's peeing now.

No Word

I'm so worried.

pastor dorth from st. john's is here.

no word. we're still in waiting room

Jen

Is angry. Upset at herself because she saw this coming. Talked to nurses who didn't respond. Waited too long, she says.

She's upset with the professionals who said let's wait. When she asked for attention, she was told to wait until rounds at 9. At 815, she pressed and kept pressing and finally it wasn't until Physician's Assistant came up to see how Zoe was doing that things really started moving.

Of course as a parent, you'd try to own this. We also just feel like we have to reeducate, reask questions each shift change. We hate feeling like zealots, those parents who are pressing. But here we sit with all these emotions.

Welcome Ella

My brother Andreas and his beautiful wife gave birth to a 5 pound 15 ounce little girl they named Ella earlier this morning. Everyone's doing well.

please God

don't let anyone come through that door with bad news. please let zoe come back to us.

Infection

Zoe has an infection. This is something Jen suspected for the last 12 hours. She has continued to ask about the possibility of an infection. Jen has asked nurses about the congestion baby has experienced and the temperature. The professionals kept saying it wasn't an infection. Now the experts confirm yes, it's an infection.

Physicians Assistant Elliot - who has kept with Zoe this whole time - walked in and listened to her and sprinted out to get help.

Zoe has been rushed to ICU and reintubated. They have put a central line in her leg to get medicines to her body since her heart isn't getting blood everywhere.

My internet was down this morning or I would have told you that we found out at 4 am that Zoe had a partially collapsed right lung that was reinflating with each breath. Could that have been why Zoe wasn't eating? Why weren't we told? Answers we probably won't get.

We're back in the surgical waiting room. Back to square 1. And this time, things are very bad.

Zoe's heart isn't getting blood to her whole body. It could be the infection that is preventing the heart from working. Or it could be a problem with the heart. If it's the heart they might have to go back in.

PRAY!

Zoe just went back down to PICU...not breathing well, renal is going down...please pray.

temperature rising

...and the medical team is a little worried that Zoe might be getting an infection again. This is a particular concern for Zoe since Trisomy babies have a really hard time with infections.

This has moved up past eating as Jen's chief concern.

Neighbor News

Zoe's neighbor - the boy who was alone all night - was blessed by some answered prayers. His mom came for a few hours. Some others came for an hour or two. And a kind nurse kept calling him "my baby."

"It's ok, my baby," the nurse would say as she rocked him. She spent a lot of time with him today, rocking him.

Zoe Update

Zoe is pudgy in the face. Which makes her, with the big eyes, even more cherubic. When I checked in on her she was having trouble calming down. Jen's worried she's just too anxious. That's not manifested in crying, but in uneasiness and not eating.

If they can't get Zoe to eat, they're going to insert an eating tube. I'm not a big fan, if you check posts from months ago. I don't like that they have to hold a kid down to insert it. I don't like that I know she was eating just four days ago but now that she's not she gets food poured down her nose.

On the other hand, we don't have a lot of options. Either she calms down and eats, or she has to have food introduced to her somehow. It's tough.

I sang her songs and held her close and pulled her airflo tube off her nose. She was fine without it and they removed it. Now, eat Zoe. Now.

Pray for Calista

We found out the yesterday that our friend Calista has leukemia.

When we attended church with her, Calista was the loudest singer. She was in the front row so she could dance a little while singing. And clap.

During the sermon, she'd be the one to hoot and holler and yell "Amen!"

I grew up in a different sort of church, but when you attend Calista's church, I think you'd understand better how being led by the Spirit - sometimes - isn't just emotion. Isn't just show.

Calista has Downs Syndrome.

Oh please pray for our friend through this trying, awful time. So much happening she might not understand.

But know this: Calista is her Shepherd's lamb. And her faith - expressed so wonderfully, passionately, eloquently each Sunday - was a source of inspiration to us and is our peace as she undergoes her trial Calista is loved. Calista is held.

Our Roommate

Our roommate is a little boy with a shock of dark hair. He has some kind of issue where he doesn't cry - only squeaks a little. Mom and Dad are somewhere...don't know. Someone visited him for an hour last night.

But he's alone behind his curtain and you can hear him squeaking a little. He's breathing loud. He's crying. Alone.

Eating

Jen called in the early morning hours asking for Zoe's bottles. Zoe wasn't eating anything. She also wasn't peeing or pooping.

Jen wondered if she had her bottle from home, maybe there'd be some comfort there. Given that she has never slept alone, there's just so many things different from "normal."

I drove over to the hospital and brought the bottles. She just swatted at them. Jen did some magic to get her to poop, and with the help of both parents (Dad talking in her ear and smooching her forehead) she decided to take a little formula.

If she doesn't take formula through a bottle, they'll insert a feeding tube. For both Jen and me, it's a tough one to take. We know how hard baby squirms and wails when they insert it. We know it's not the same.

Then again, she's been through so much that we'll let them do whatever. It's just that baby might not understand what's going on. Maybe she saw too many things shoved down her throat in the last few days.

I'm typing, baby's swallowing little bits at a time. But more than the last 12 hours.

The New Room

Zoe's new room is kinda small and reminiscent of the old room Jen and Zoe shared. Too reminiscent for me, but Jen's in a different place with it all. She says the window has a little sunlight in it and it has its own toilet and sink, so that's something.

Zoe was sleeping when I was there. They're concerned because there has been no peeing since the catheter was removed, and my completely-novice take on that is is...if it worked before, but doesn't know, how could that be something to do with the kidney? But that's what they're concerned about. Kidney function.

We're starting to talk about the realities of the next few days. We'll see where this all leads with work and school and jobs and stuff. Good things to worry about.

For Giving Thanks

Psalm 100
A psalm. For giving thanks.
1 Shout for joy to the LORD, all the earth.

2 Worship the LORD with gladness;
come before him with joyful songs.

3 Know that the LORD is God.
It is he who made us, and we are his [a] ;
we are his people, the sheep of his pasture.

4 Enter his gates with thanksgiving
and his courts with praise;
give thanks to him and praise his name.

5 For the LORD is good and his love endures forever;
his faithfulness continues through all generations.

ZOE: Moving On Up

Out of the ICU to a patient room.

Happy Thanksgiving.

Hitting The Bottle

Might be time for Zoe to try some eating from the bottle. What do you think?

heart- 131 O2- 94.

She's loving the pink tedy bear ethan got for her.

Even More Tubes Out

What used to be seven different units dispensing medicines of all sorts is a single one. Zoe's got a tube giving her a very little bit of oxygen with air...she looks like a little kid lying in her bed.

This is all you guys, your love and prayer, and God's will and Zoe's determination. A confluence of beauty.

Chest Tube Out

Stats stable. They didn't even give her anything for the removal. Apparently they do it with little rampup so the kid doesn't sense something's coming. She's o2 is at 94 and she's just looking at a lighted fish toy.

Update-

1/2 hour after her energy med, it looked like Z was going to go back down to around 80 for O2, and we would have to keep reminding her to breathe strong enough not to dip down or crash. wrong! It is 4:45am and Z has had one of the greatest nights since she was born!


Heart 119
O2- 91
and hasn't gone below 80 once...

praise GOD!

Jen's Updates:

heart- 129
O2- 89
Eyes- Wide open looking at me
More meds and tubes disappearing tomorrow!

Happy Thanksgiving Everyone! Truly...MANY blessings to you all. Jen

ZOE GETS A JOLT

Something they give preemies ...

caffeine to stay energized!

It's working great! She's been up over 80 oxygenization. Eyes wide open. Jen says she's trying to dance and she says, "AAAAAH."

MMMMMM. CAFFFEEEINE.

Zoe would be the guy in the back of the line. (sorry about the popup. just close that window)

jen's thought

baby has just gotten through a heart surgery. has goo in her lung. just got her temperature. we're told that even "normal" kids who are recovering from heart surgery undergo apnic attacks.

jen's thinking: just reintubate, let her get better or more stable, try again. we'll see.

trying to find frequency

zoe keeps doing well, then fading. she went all the way down to ox less than 50 and if she isn't stimulated, she drops way low. we'll have to figure out what to do next.

offsite

ok so jen is with zoe and i'm with the remaining kids. i'm torn. i'm hoping baby is ok.

another episode

zoe forgot again. she had another apnic fit and had to be bagged and brought back. keep praying. they might have to intubate again.

woods

So, we're still dealing with some woolly breathing numbers but she's doing pretty ok. The big kids and the boys should be here soon. Zoe is getting some mask 02. she likes that.

We're fully Eclipsed, which is nice.

I'm going to meet up with the kids and go to a hotel for the night, courtesy of Grandma Chris.

according to dr. ghanayem

this crazy breathing episode - which included jenny and me yelling to zoe to take a breath (her heart kept beating but her ox number dove to under 10) -

may be that she has some component of sleep apnea. and it might have been narcotic related (morphine or some other opioid). we can't go to tylenol yet because of reduced kidney function. they might have another option with pain management if all others don't work.

she does need pain mgmt or that will effect her breathing as well.

at this time, her body might not be understanding that she doesn't need to breathe like before. and so it's just figuring things out.

it also might be that she has more sleep apnea than we're giving her credit for.

options

Dr. Ghanayem says that she wants to avoid reintubating. She's trying some other options. Wonders if the episode was an exaggerated episode that she might have at home.

she's pulse/ox 86 139 heart rate. at least calmish instead of what just happened.

reintubate?

they're getting stuff ready to intubate. might put her back on a tube.

phantom blogreader...

has dropped off more eclipse mints! oooh feel the love. i'm going to have to write a ditty about the love.

scary

zoe is holding her breath and causing trouble. pulse/ox going all the way down to 20's. that one was scary.

what's next

zoe is going to need suctioning to keep the crud in her lungs out. and monitoring as her other organs begin to pick up function.

the hardest part is over, just more work before the work and after the work.

But God is good. :)

Ted and Gina To The Rescue

Ted and Gina came by with an abundance of Eclipse Mints! This post brought to you by Eclipse Mints. And Ted and Gina. They stayed around and were in the waiting room while Zoe was extubated.

ZOE JUST MIGHT HAVE COME BACK TO US

mommy's talking to her and now she's breathing herself.
and pulse/ox 94.
awake, no voice.
Zoe Pinky.

tube's out

no voice yet
but she's mad and breathing herself.
mom is on the fringes watching.
in a bit mommy can hold her.
yeah. that's right.
happy thanksgiving

lift her up

extubate

still awake

Dr. Ghamayen has changed the vent setting to CPAP. Breathing ok. they're waiting until she takes more control. She's doing ok.

Temp has been sitting at 36.9.

Waking Up

She's uncomfortable and if she didn't have that tube in her, we'd hear her wailing. But she's awake. Just stop and stare at that sentence again.

No pain meds until extubation.

Robbie Checks In

Robbie Seay checked in on Zoe on my Facebook wall...

greg
how is our girl doing?
thinking and praying for zoe this morning
happy thanksgiving to you guys
r

What a great way to round out the holiday.

**update: after looking at blog stats, some 30-40 percent of you are new visitors and so...if you don't know....click that robbie tag and read how great Robbie is. yeah, that Robbie Seay. From the radio. Whose songs you sing in church.

Mint Crisis

We've had to go to the Icebreakers, an inferior mint. It's a little disheartening that my crack/heroin isn't by my side. But we'll have to ride this out with Icebreakers.

Extubate Today

Dr. Ghanayem instructed a reduction in meds to wake Zoe up.

Zoe is triggering the vent...kind of commanding it to breathe, which is a great sign. They have already reduced the epi, which lowered her heartrate.

Some organ function (liver, kidneys) was lower because her body has to figure out what to do with the blood. This is a symptom of the B-T shunt. It will change.

Extubation today. Temp is 37.3. I've said it a ton of times but this moment is critical in Zoe's life and existence.

Come back to us, Zoe.

Thanx Pix Part 3

Rounds in Zoe's Room.
Dr. Ghanayem on the computer.

More Thanksgiving Pics

Dr. Tweddell and Physician's Assistant Elliot taking care of business. We keep hearing word that Tweddell is the best. The master. We are so blessed to have him working on Zoe. We would have taken anyone. We got the best.

And Elliot has been incredible as well. Apparently they've been working together a long while.

Sam Provenzano

Sam did a super sweet thing and raised money for Zoe and her family. It was sticking in my head last night, and Sam had asked for a lil' thank you to all those who had contributed...so I sent her something she posted on her blog.

She was so kind and gracious in her pursuit of simply helping. When she delivered dollars to us it was such an incredible moment of grace and humility for us.

God's a funny guy.

New Nurse! Andrea

Andrea's here until 3:30.

37.6 = 99.86

Great news.

**Updated 37.5

**Updated 37.4 and heartrate a very cozy 113.

So...Now What?

So we know the fever was a symptom of the infection. And we know that Zoe has to be at 37 degrees in order to extubate. Does that mean that the infection must be eradicated in order to extubate? At what temperature would they consider an extubation? Stay tuned. I'll get answers for you.

A Few Pictures

Pink Zoe.

Doug's been here since the crash yesterday.

Caty spent the nightshift with us.

You Know What's Cool?

Hulu.com. You can watch tv shows, movies, movie clips. Pretty cool.

They obviously haven't quite mastered the whole advertising model - so I'm not sure how long Hulu.com will be around - but way to go.

So let's introduce Hulu.com and Eclipse Mints as our sponsors. Even though I have one Eclipse mint left.

The Infection

Zoe has a bacterial infection in her right lung. Antibiotics have been introduced into her airway and we're hoping for some real germ war to accompany the spiritual war. I'm going to instruct everyone to pull out their secret prayer decoder ring and use a A-15-23-0948.

Goes like this:

16Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective.

Temperature

38.5

keep praying...

37.9?! Yup.

It's happening...actually 37.8 while I'm writing this.

Zoe's First Thanksgiving

Zoe is thankful.

Thankful for 250 days of grace. Thankful you've walked with her and carried her in your prayers when she couldn't go on. Thankful for doctors and nurses who believe in the pricelessness of a breath and the value of life.

She's thankful for things we walk by without noticing - a shadow or a brilliant color. The incredible dexterity in our hands. Wind in trees. For things we forgot had worth. A mother's sacrifice. For a baptism. For a breath.

And I think if you could ask her and if she could respond - and one day, you ask her for yourself in Heaven - you'll know Zoe right away, the shapely and tough-as-nails woman, terrible and beautiful as a goddess with a smile that makes you forget everything else - if you asked her if she knew all she had done through 250 days, she'd smile and tell you she didn't do anything at all. That God had done it in her and in you. She just fought and breathed and believed.

And you were moved because you forgot life was that simple and powerful and meaningful.

Zoe's thankful you remembered.

Things To Sing

To your kid when she wakes. Well, you gotta sing Robbie Seay. Because it was a year ago that it all started, all of it. And maybe a little Harry. And some old stuff that I used to sing when Kara would look at me and call an audible.

Jen's out in the parent room getting 2 hours so the concert goes on. She's awake and down to 38.1. Happy Thanksgiving.

38.5! Strategy Working

Rohit, the doc who offered a slightly different strategy than the previous docs, is getting his wish: pee and less fever. I am wishing for even more pee and even less fever. How's that for a Thanksgiving wish?

MMMMM. Eclipse Mints.

New Nurse!

Caty has five kids and we're filling her in on what we know. She has a Port Pirates lanyard so she must be from the neighborhood.

Caty's going to be on the ride with us for the next few days.

Almost Out Of Eclipse Mints

How did this happen? How unprepared am I?

38.8

We left to get coffee and told Zoe we wanted her down to 39.0 by the time we came back.
She listened.
She was shifted on her left side...but Beth says that didn't have as much to do with it. So...keep praying.

39.5

Going the wrong way. Not sure what the solution is. We keep waiting.

Happy Thanksgiving

To all of you from all of me. From the Bats to the world. Thank you.

39.3

So whatever you were praying, pray it, but pray it more fervently. I need 2.3 degrees here, prayers. C'mon. :)

God of the Heavenly Lights, Healer, Friend, breathe on my daughter and heal her. You can make her whole. Only you can.

Extubate Tomorrow

Zoe's temperature is too high. They will not extubate today. A different Thanksgiving than I hoped. They won't know if this is an infection until they check late late at night. Discuss amongst yourselves.

39.4

Still too warm. Actually warmer. Keep praying. They have been giving her antibiotics as a matter of course since the operation. Blood has come back good and her lungs are clear according to the chest x-ray. Just too warm.

Temperature

Zoe's had a fever since the morning. It's actually warmer than she was. 39.2 celsius, which..I'm not converter, but I'm guessing 102? (102.2 after confirmation).

Tweddell and Frommelt both said it's typical. The PICU docs want it to go down before the extubation. Soooo....we need her to cool down.

Zoe has restraints on so she doesn't pull her tubes out. And she's trying to figure out ways to get at them. She is very resourceful. The fighting continues.

Sometime After 3

They'll be trying after 3. Not for at least two hours when fever goes down. hmm. okay. all other stats are good. they turned the vent down so that she can handle more breathing...

when i get a time

for extubation...i'll pass it on.

pastor rafferty dropping by. :) good ole pastor rafferty.

More Children's Kudos

A commenter:

Thank you for acknowledging CHW... it has become our "home away from home" and we are SO very grateful for all that they do for US, as well. We are also so blessed that they take care of all of Jacob's little friends, too (aka~ Baby Z!) I am following another site where Dr. T is back at it, hard at work on another baby's heart. Amazing. He shook salt on his onion rings yesterday at the table next to me in the cafeteria and I almost passed out in his presence! He has never operated on Jacob but has saved SO many that we care about. I am so glad that he was there with Zoe as her surgeon. There is no better combo than Dr. T + God in that OR.

God's continued blessings and lots of love from Jen (Snell), Jeremy & Jacob Schultz
www.caringbridge.org/visit/JacobJeremySchultz

DNR

Yeah, after yesterday's assurances that the DNR was gone and not applicable, apparently a digital version exists in the Children's system. So...we're making sure that is removed.

So, parents out there - make sure that if you change the DNR or request that it is removed, you really have to double and triple-check. There are too many ways that it can exist.

Look at comments from one commenter - where a DNR was set up without her consent! (not at children's-milwaukee). So make sure. and then make sure the next day.

Thank God for Children's Hospital - Milwaukee

For Dr. Tweddell, who has taken Zoe and this surgery on. For the host of concerned and caring caregivers, including Nurse Beth. Elliot and all of them. We are so grateful for the care and for the sensitivity to us.

aah parenting

hey, brit, look on the bright side. Jayden just had some food poisoning.

Believe me, brit, parenting gets exciting sometimes. ask me.

Extubate

sounds like they still want to extubate before 4 pm.

huge.

i'll probably hang here to make sure she's not rocky after.

my opinion of events: i think the floor was slow to respond to multiple alarms. slow meaning, no one responded. like people at the desk and stuff, and there's multiple alarms ringing and no one even coming to pat us on the head and say we're being alarmist.

instead...would you leave the room if you were the one witnessing those alarms alone? yeah, i thought so. jen's staying here for the duration.

right now

ethan is giving his thanksgiving program. hoping we can get a reprise sometime. maybe we'll youtube it for you guys.

kellen went a little nuts last night and was leading scorer on jv basketball- 20/7/3 and a block. 3/3 freethrows. i think that's being sent to espn/guinness as "best performance while sister is having heart surgery"

josh wowed 'em yesterday performing 4 songs for "hometown heroes" .

p.s. the first hometown heroes event was where jen and i busted out our song we wrote for the event.

zzzz

pretty sure she's sleeping now. my uneducated opinion: that's what the deal was all along. she's got some resting to catch up on.

heartrate 149, pulse ox 95 bp co2 everything very nice. sweetspot.

34 Countries

Haven't checked the Batblog stats in a while. I'd like to welcome whoever you are in South Africa. And France, which is hopping. Still at around 10,000 monthly visits. You go, blog.

tube position

last night post op they thought tube was too high. they inserted it deeper 2 cm and it might have been almost obstructed. with a shift, it became obstructed and stats crashed. crazy down. like a rock down and you're watching that stuff happen.

the team pulled it back, now all numbers are better.

now she's not as fidgety as earlier. all numbers are significantly cozier.

chest xray

to determine location of the tube. it's cool in this room. cooler than you'd think they allow. we were told that surgery rooms are cooler cuz it's easier on the heart. so...there you go.

crash

so that's what that looks like.
holding baby's hand. jen sees stats dropping. heartrate from 150 to 50's , bp, co2. everything. alarms going off. jen goes to the door and says, "anyone?"
nurse comes in and starts yelling for people, now. come, now.
i think maybe 12 people in the room. maybe more. crash cart.


now her heartrate bp are back. something with her intubation tube.

Fever

We just witnessed rounds...a packed house of people talking about Baby Z. They're going to remove the sedatives and start giving her medicines that will get her close to breathing alone. Extubation is still planned for today.

Now That's a Pink Baby

All We Can Do Is Pray

Yeah guys, all you can do is pray. Cuz you would do something more if you could. God, He's just pure life and pure love and so much bigger than you can imagine. You are little compared to a house, and that house little compared to a hospital, and that hospital little compared to a mountain. and that mountain miniscule compared to the planet. And the planet tiny compared to the Sun. And the Sun...infinitely small compared to other Suns. And God, massively bigger than all those things.

God has to kind of hold His breath to even fit Himself into this earth. Like it's limp and flopped over like a blow-up kids toy that "SPROING!" jumps to its fullest once He's inside. His breath is life. He can't NOT make beauty.

So, all you can do is pray to Him.

And, you could do something better. Gotcha.

Morning Time

As Ethan would say: It's morning time. It's not night time. It's morning time!

Zoe is fidgety and full - full - of tubes and monitors. I guess you'd say "of course" but my thoughts are how weird that is. We've gone from docs removing them 7 months ago to them being back on her.

Heart rate is good and bp good. She has a little fever. Pulse/Ox almost 100. :) My rudimentary knowledge of things is telling me they're still giving her a sedative from last night.

She definitely recognizes mamma's voice.

Perchance To Dream

Zoe's knocked out, so the docs and nurses told us to zonk out too. So i'm signing off and catching up with you tomorrow.

Thank you again to all of you and your remarkable, incredible friendship, faith, and hearts of love.

proof

God is alive and well and in control. And it's not because Zoe is alive. Look at the story of today unfolding, including the comments on this blog from Italy. Erika calling people to pray. The hosts of people lifting their hands. God is alive and well and in control. Zoe...he's got Zoe. On Earth or Heaven. But some of us wouldn't pray unless we were going through something. So He puts us through it. Some of us wouldn't humble ourselves unless we met something too big to handle. So He gives us that huge, mammoth, sickening, immovable object.

Then He moves it.

She's Out Part II

Zoe is out. The Doc's description is that when they put the shunt in they put some thinner in the blood and typically do not reverse that thinner. This time, they did reverse that process and they're pretty sure they got it.

She was stable throughout the whole process. They're letting her stay knocked out tonight.

From The Same Chapter

...as the "cloud of witnesses" verse:

7Endure hardship as discipline; God is treating you as sons. For what son is not disciplined by his father? 8If you are not disciplined (and everyone undergoes discipline), then you are illegitimate children and not true sons. 9Moreover, we have all had human fathers who disciplined us and we respected them for it. How much more should we submit to the Father of our spirits and live! 10Our fathers disciplined us for a little while as they thought best; but God disciplines us for our good, that we may share in his holiness. 11No discipline seems pleasant at the time, but painful. Later on, however, it produces a harvest of righteousness and peace for those who have been trained by it.

12Therefore, strengthen your feeble arms and weak knees. 13"Make level paths for your feet,"^[b] so that the lame may not be disabled, but rather healed.

I'm kind of digging the paraphrase of that from "The Message"

My dear child, don't shrug off God's discipline,
but don't be crushed by it either.
It's the child he loves that he disciplines;
the child he embraces, he also corrects.

God is educating you; that's why you must never drop out. He's treating you as dear children. This trouble you're in isn't punishment; it's training, the normal experience of children.

Only irresponsible parents leave children to fend for themselves. Would you prefer an irresponsible God? We respect our own parents for training and not spoiling us, so why not embrace God's training so we can truly live? While we were children, our parents did what seemed best to them.

But God is doing what is best for us, training us to live God's holy best. At the time, discipline isn't much fun. It always feels like it's going against the grain. Later, of course, it pays off handsomely, for it's the well-trained who find themselves mature in their relationship with God.

I Can't Think Of

One thing to say. It just seems like a long time. I guess in "surgery time" it isn't? I don't know.

Come back to us, Zoe.

Night, Laura

No news yet. Nothing.

Since We're All Up Praying...

How about praying for the Sczesneys? Gosh. Father hold them.

No News

Talking to Laura the nurse about general admissions stuff. No news from surgery. I think this fits into the scale of Welcome To The World as a Level 9: Stomach Punch.

Zoe In ICU

Zoe was on a vent and had a bunch of tubes. She heard us and is pink and pretty. No more blue nose. The tube from her chest was blood. Pray for her.