Sunday, November 30, 2008
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.
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.
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?
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!
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?
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Saturday, November 29, 2008
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.
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.
"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.
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.
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.
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.
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.
Friday, November 28, 2008
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.
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.
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.
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.
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.
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!
Heart 119
O2- 91
and hasn't gone below 80 once...
praise GOD!
Thursday, November 27, 2008
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
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)
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.
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.
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.
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.
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.
she's pulse/ox 86 139 heart rate. at least calmish instead of what just happened.
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. :)
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
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
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Wednesday, November 26, 2008
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.
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.
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?
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.
Caty's going to be on the ride with us for the next few days.
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.
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.
39.3
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.
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.
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.
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
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Then He moves it.
Tuesday, November 25, 2008
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.
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.
Come back to us, Zoe.
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.
The Correct Answer To The Question Is
Yes. You should be worried.
After almost 2 hours of waiting, we went to find out what was up.
Zoe is bleeding too much internally.
They are taking her back into surgery right now.
After almost 2 hours of waiting, we went to find out what was up.
Zoe is bleeding too much internally.
They are taking her back into surgery right now.
Tomorrow
So we can think about tomorrow. And a little fighter who keeps on keeping on. Thank you all for being a cloud of believers around our Zoe. Please hold on a little longer...and don't stop praying til we can get that tube out of her throat. It was their fear all along.
1Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us.
hebrews 12: 1
1Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us.
hebrews 12: 1
Punkin
Just wheeled her by the waiting room and she's lying there. And i walked up and told her hi and i loved her and her little heart rate went up. And told her i'd see her in a bit. And her eyes fluttered.
She's OUT!
No bumps in the road. The nurse says she is "very stable."
They're leaving the breathing tube in until tomorrow.
The shunt is in and it works.
The big thing now - the huge thing now - the huge challenge - is removing the breathing tube. It's what they're concerned about.
Do not tire. Keep praying.
They're leaving the breathing tube in until tomorrow.
The shunt is in and it works.
The big thing now - the huge thing now - the huge challenge - is removing the breathing tube. It's what they're concerned about.
Do not tire. Keep praying.
Thank God For Kirin
The beginning of one of her stories: "So it was morning, and I'm in a bar..."
Then trying to recall what the dark-haired girl in Peanuts was. With the hair up. She's pretty sure she stole Schroeder's heart.
Also...telling us that if she had those Treehouse books, she would have done great in History.
And how she made the Dean's list at UW-Lacrosse.
Then trying to recall what the dark-haired girl in Peanuts was. With the hair up. She's pretty sure she stole Schroeder's heart.
Also...telling us that if she had those Treehouse books, she would have done great in History.
And how she made the Dean's list at UW-Lacrosse.
Jen Says
Now back to the stare-down of the door.
We're waiting for someone to walk through.
Come back to us, Zoe.
We're waiting for someone to walk through.
Come back to us, Zoe.
Waiting
There's been a lot of happy families, a lot of good news being shared here. Giovanni's family just got good news and they're going to see him in his bed as he is wheeled down the hall.
My family is everywhere. One of my eight sisters is sitting across from me. My son is playing hoops right now. My daughters are...all over. My work friends - my brothers and sisters - are all waiting news. Dr. Tweddell says there are days of making the Gortex work...days after surgery where they have to adjust things and meds to make it work.
I just want Zoe Bean to wake up. The family is waiting.
My family is everywhere. One of my eight sisters is sitting across from me. My son is playing hoops right now. My daughters are...all over. My work friends - my brothers and sisters - are all waiting news. Dr. Tweddell says there are days of making the Gortex work...days after surgery where they have to adjust things and meds to make it work.
I just want Zoe Bean to wake up. The family is waiting.
The Waiting Room
We are now - with Kirin - the only remaining non-Spanish speakers. That zodiac show on Telemundo ended at 7:04. Shows ending at 7:04? Is this a Spanish thing?
I'm going with coffee, for better or worse. Holly's news from 45 minutes ago has buoyed our spirits. You can do it fighter. You can do it.
I'm going with coffee, for better or worse. Holly's news from 45 minutes ago has buoyed our spirits. You can do it fighter. You can do it.
Jen
If you know Jen, you know sometimes, Jen needs to sit. She really didn't want anyone else in the room with us. She just wants to sit and think. It's a lot like Jen in labor. She really doesn't need you whispering in her ear or going through breathing with her. She just needs you to leave her the heck alone.
Kirin just arrived and Jen was updating Kirin. And she just called her dad to update him.
But I'm the perpetual motion person. And Jen, isn't. I tried holding her hand but I'm not a big sitter arounder. Maybe they need to install batting cages here.
Kirin just arrived and Jen was updating Kirin. And she just called her dad to update him.
But I'm the perpetual motion person. And Jen, isn't. I tried holding her hand but I'm not a big sitter arounder. Maybe they need to install batting cages here.
Good Girl
They're sewing the shunt in now. It's a piece of Gortex that according to Dr. Tweddell is likely to not be exactly the right size.
The nurse said they had a delayed start. Zoe is doing perfectly great.
Come back to us Zoe.
The nurse said they had a delayed start. Zoe is doing perfectly great.
Come back to us Zoe.
waiting room anxiety blues
it's cold in here. we're back to telemundo. some game show with different zodiac signs. it's very long. i think the show is an hour. everyone in this waiting room except for one lady speaks spanish. the lady has been here longer than me. the doc just came out and said her son was asking for dad. so dad went in and she's here on the bench.
no sign of anyone yet.
no sign of anyone yet.
light of the world
Light of the World
by Jennifer Knapp
hold me, light of the world
love me
say you love me
and i will be free
sing me a lullaby soft as you can, i'm alright
i'm alright
sing me the melody strong as you can
i'm alright
i'm alright
hold me, light of the world
love me
say you love me
and i will be free
hold me, light of the world
love me
say you love me
and i will be free
i will be free
by Jennifer Knapp
hold me, light of the world
love me
say you love me
and i will be free
sing me a lullaby soft as you can, i'm alright
i'm alright
sing me the melody strong as you can
i'm alright
i'm alright
hold me, light of the world
love me
say you love me
and i will be free
hold me, light of the world
love me
say you love me
and i will be free
i will be free
Ted Calls
Ted called. He's the guy I mentioned earlier who had emergency eye surgery. He brought some of his loony humor, offering to sell me gutters for my car. It broke my truly uneasy calm.
Jen's been sitting here holding the blanket, mostly quiet.
Come back to us, Zoe.
Jen's been sitting here holding the blanket, mostly quiet.
Come back to us, Zoe.
Just Say The Word
The Faith of the Centurion
5When Jesus had entered Capernaum, a centurion came to him, asking for help. 6"Lord," he said, "my servant lies at home paralyzed and in terrible suffering."7Jesus said to him, "I will go and heal him."
8The centurion replied, "Lord, I do not deserve to have you come under my roof. But just say the word, and my servant will be healed. 9For I myself am a man under authority, with soldiers under me. I tell this one, 'Go,' and he goes; and that one, 'Come,' and he comes. I say to my servant, 'Do this,' and he does it."
10When Jesus heard this, he was astonished and said to those following him, "I tell you the truth, I have not found anyone in Israel with such great faith. 11I say to you that many will come from the east and the west, and will take their places at the feast with Abraham, Isaac and Jacob in the kingdom of heaven. 12But the subjects of the kingdom will be thrown outside, into the darkness, where there will be weeping and gnashing of teeth."
13Then Jesus said to the centurion, "Go! It will be done just as you believed it would." And his servant was healed at that very hour.
i have to admit
i am not sure i can do this. i'm just about ready to break down. please be ok zoe. i pray that God is just holding her in His palm and rewarding all of her stubborn fighting.
The Last Five Minutes
are being sent to NASA and the Atomic Clock people and Guinness as the slowest five minutes ever. I have no idea what to do with myself and no idea how i'm supposed to make it through 18 more five minute periods like the last.
Then again, I hope it's a great hour and a half, and then Holly comes and says Zoe is ok.
A kid is out in the hallway in a crib gurney. His family is going out to meet him and he is calling and talking to them. And now I'm crying a little.
Another surgeon in to talk to a family. It went well for them.
Then again, I hope it's a great hour and a half, and then Holly comes and says Zoe is ok.
A kid is out in the hallway in a crib gurney. His family is going out to meet him and he is calling and talking to them. And now I'm crying a little.
Another surgeon in to talk to a family. It went well for them.
What They're Doing
The surgery being performed is called the Blalock-Taussig shunt procedure.
Cut'n'pasting from Wikidocuments:
Cut'n'pasting from Wikidocuments:
The original procedure was named for Alfred Blalock, surgeon, Baltimore, (1899–1964) and Helen B. Taussig, cardiologist, Baltimore/Boston, (1898–1986) who, along with Blalock's African American laboratory technician Vivien Thomas (1910–1985), developed the procedure. Taussig, who treated hundreds of infants and children with this disorder, had observed that children with a cyanotic heart defect and a patent ductus arteriosus (PDA) lived longer than those without the PDA. It therefore seemed to her that a shunt which mimicked the function of a PDA might relieve the tetralogy patients' poor oxygenation. In 1943, having broached the possibility of a surgical solution to Dr. Robert Gross of Boston without success, Dr. Taussig approached Blalock and Thomas in their Hopkins laboratory in 1943.
According to the account of the original consultation between the three provided in Vivien Thomas' 1985 autobiography Partners of the Heart, Taussig carefully described the anomaly of Tetralogy of Fallot, but made no suggestion about the specific surgical correction required, observing merely that it should be possible to get more blood to the lungs, "as a plumber changes pipes around."
Although Dr. Taussig was not aware of it at that time, Blalock and Thomas had already experimented with such an anastomosis, one that Blalock had conceived years earlier for a different purpose but which had the unanticipated effect of re-routing blood to the lungs. The operation involved the joining of the subclavian artery to the pulmonary artery.
After meeting with Taussig, the two men set about perfecting the operation in the animal lab, with Thomas performing the subclavian-to-pulmonary anastomosis alone in some 200 laboratory dogs, then adapting the instruments for the first human surgery from those used on the experimental animals and coaching Blalock through the first 100 operations on infants.
The procedure is featured in a movie called Something The Lord Made, starring Mos Def and Alan Rickman. Rickman was the bad guy in "Robin Hood." "AND CANCEL CHRISTMAS!"Telemundo Mystery Solved
More than half of the people in here are speaking Spanish. I heard someone say "como" which I know to be a Spanish word meaning something.
We've moved Blogger central to a different wall. Jen and I were both surprised that a mural of dolphins and fish and stuff was painted on the wall behind us. We would have failed some observational test.
We've moved Blogger central to a different wall. Jen and I were both surprised that a mural of dolphins and fish and stuff was painted on the wall behind us. We would have failed some observational test.
Holly Back To Say
They are about ready to get started. Her lines are in and they have had no problems. She said she'll be back 6:30 or 7ish.
We/they were worried about getting Z under...so far, that's not an issue.
Might have to plug this computer in somewhere. Jen still hugging Zoe's blanket and me trying to fill this time up with something.
Come back to us, Zoe.
Keep praying...
We/they were worried about getting Z under...so far, that's not an issue.
Might have to plug this computer in somewhere. Jen still hugging Zoe's blanket and me trying to fill this time up with something.
Come back to us, Zoe.
Keep praying...
Aim At Heaven
From C.S. Lewis:
Hope is one of the Theological virtues. This means that a continual looking forward to the eternal world is not (as some modern people think) a form of escapism or wishful thinking, but one of the things a Christian is meant to do. It does not mean that we are to leave the present world as it is. If you read history you will find that the Christians of the Roman Emnpire, the great men who built up the Middle Ages, the English Evangelicals who abolished the Slave Trade, all left their mark on Earth, precisely because their minds were occupied with Heaven.
It is since Christians have largely ceased to think of the other world that they have become so ineffective in this. Aim at Heaven and you will get earth "thrown in": aim at earth and you will get neither. It seems a strange rule, but something like it can be seen at work in other matters.
Hope is one of the Theological virtues. This means that a continual looking forward to the eternal world is not (as some modern people think) a form of escapism or wishful thinking, but one of the things a Christian is meant to do. It does not mean that we are to leave the present world as it is. If you read history you will find that the Christians of the Roman Emnpire, the great men who built up the Middle Ages, the English Evangelicals who abolished the Slave Trade, all left their mark on Earth, precisely because their minds were occupied with Heaven.
It is since Christians have largely ceased to think of the other world that they have become so ineffective in this. Aim at Heaven and you will get earth "thrown in": aim at earth and you will get neither. It seems a strange rule, but something like it can be seen at work in other matters.
The Door Opens
And you look over and hope no one is there. Too early for good news. This guy in surgical garb is telling a family that things went perfectly.
Surgery Day Random Thought 3
I was walking through Children's yesterday and I heard...around the corner...a familiar sound. A rattle of a tin that I know intimately.
Eclipse mints.
The nurse turned the corner and she even had the appropriate flavor of Eclipse mints, the mints that are my crack/heroin. Someone quick write the people at Eclipse mints and have them sponsor the blog.
I've got my tin right here. It's the mint I swear by. Eclipse Mints. Winterfrost. Have two in my mouth right now.
Eclipse mints.
The nurse turned the corner and she even had the appropriate flavor of Eclipse mints, the mints that are my crack/heroin. Someone quick write the people at Eclipse mints and have them sponsor the blog.
I've got my tin right here. It's the mint I swear by. Eclipse Mints. Winterfrost. Have two in my mouth right now.
A Quiet Waiting Room
Jen and I sitting on a bench. There's a guy texting who doesn't know he can turn the beep sound with every keystroke off. Someone turned the tv from Telemundo to Oprah.
Please come back to us, Zoe.
Please come back to us, Zoe.
The Concern
For surgery has always been putting Zoe under and bringing her back. The anesthesiologist said that she the configuration of her face will be challenging - her jaw is recessed somewhat - and that she may be on a breathing tube after surgery.
Thank you so much for looking after us...all of you. I'm not sure what people like me do in situations like this, so I've taken to texting.
Thank you so much for looking after us...all of you. I'm not sure what people like me do in situations like this, so I've taken to texting.
The Next Door
Waiting Room at Children's Hospital Wisconsin. Tired people waiting anxiously. The People's Court is on the TV. I am not making this up. Holly - a nurse I think I remember from yesterday - says she'll meet us here at 5.
Wait it's not People's Court. It's Caso Cerrado on Telemundo.
Wait it's not People's Court. It's Caso Cerrado on Telemundo.
Come Back To Me
Met the anesthesiologist and then after twenty minutes they took her. And I told her to come back to me.
On The Surgical Floor
Nurse Deb says maybe 20 minutes at the most in this purgatory. She's back on oxygen and pissed. I have to admit i think i missed a class or something. no idea why we're here.
Still Waiting
Zoe is back to crabby. Too long...this is the longest amount of time she's gone without food in her life. Not fond of this. Still waiting for surgery.
SHH
For the first time since we arrived, Zoe isn't crying. She's looking at her hand and sucking on her fingers. Thank you for praying her through.
DNR
We talked to the nurse to confirm that we're not going to hold the medical people to a DNR we created and signed when Zoe was 3 days old. We are just making sure. At this point, we want everyone to do everything they can until further notice.
How She Got This Far
Zoe is fuming. Hungry. Stupid oxygen. Stupid Nuk the stupid nurse gave her. She's swinging, flushed. That's how she got this far. Stubborn fighter.
Random Thought 2
Zoe's wrapped up in a quilty blanket thing Aliisa Klahn made for her. Very cozy. Talk about being wrapped and bathed in all your love.
Pink Baby
Zoe on oxygen - pulse/ox 94. Pink and pissed off. She is trying to pull the oxygen thing off of her face. She finally just relaxed a little but can't believe that a) no one is feeding her and b) people are insisting on the oxygen thing.
Surgery Day Random Thought 1
Walked into the little presurgery room and Shrek II was playing on the screen. Did you know the guy who directed the first and came up with the stories for all Shreks is Andrew Adamson, the director of the Chronicles of Narnia movies? And that his parents are missionaries? Yep. See? We're all going to learn today
About An Hour
Dr. Frommelt dropped by to ask if we have any questions. We're kind of frozen on that one. Zoe's a little crabby so Jen's singing to her. Frommelt checked and said they hope to be operating in about an hour.
At The Hospital
Zoe's not doing great. It is God's way of telling us this is absolutely the only option. We're here and in the preoperative surgical clinic and they're taking pulse/ox - 63.
Got a text from Your Favorite Baseball Player and his family. Even more well wishes from all of you and I'm so humbled.
Many of you know how I celebrate Thanksgiving. I make thank you cards and give them to everyone I can. It makes more sense to me than a Christmas card. I am so grateful. I can't tell you. I don't understand you. I will try so hard to get something to all of you, but there's so many. Too many. What can I say?
Got a text from Your Favorite Baseball Player and his family. Even more well wishes from all of you and I'm so humbled.
Many of you know how I celebrate Thanksgiving. I make thank you cards and give them to everyone I can. It makes more sense to me than a Christmas card. I am so grateful. I can't tell you. I don't understand you. I will try so hard to get something to all of you, but there's so many. Too many. What can I say?
It's ON...
No Phone call from the doc...meaning we're on for 2 pm.
Last night was a tough one for Zoe. She was very blue and fidgety. Just couldn't get comfortable. She didn't sleep much. This morning we gave her oxygen and we're trying to get her to relax.
We need this surgery. I feel different today. It's time for this. And we go in, we go in blessed, with all of you praying. We go in confident, with all of your hearts thinking of Zoe.
Whom then shall I fear?
Last night was a tough one for Zoe. She was very blue and fidgety. Just couldn't get comfortable. She didn't sleep much. This morning we gave her oxygen and we're trying to get her to relax.
We need this surgery. I feel different today. It's time for this. And we go in, we go in blessed, with all of you praying. We go in confident, with all of your hearts thinking of Zoe.
Whom then shall I fear?
Monday, November 24, 2008
Since You're Praying...
Toss one up for my dad. He was diagnosed in 2001 with a rare form of cancer, and some days, it gets the best of him. Today is one of those days.
Daybefore Blog II
Just had a very good meeting with Martha and Elliot in the pre-op clinic and Dr. Tweddell. Some interesting notes:
1. In the strange world we live in - one where certain words can't be said at work- Martha said that we are blessed to have Dr. Tweddell. And Elliot says that this is in God's hands. I know. FIRE THEM!
2. Children's Hospital is under such an enormous bed crunch that surgery might not happen at all. Every morning at 6:30, there's a meeting and the doctors decide who gets help and who doesn't. If we don't get help tomorrow, we'll have to reschedule but Dr. Tweddell's December is very booked. So turn your prayers to that.
3. It's likely we'll just rescind the DNR and let them treat Zoe like she's a kid.
4. Elliott and we had a great discussion about my thoughts on Trisomy 18. He says that he keeps encountering situations where medicine has given grave prognostications that weren't accurate. He just isn't sure if this is one of them. He did agree that because the sample of live Trisomy 18 babies is "thinned," it's tough to truly theorize on mortality or treatment.
5. At the end of our conversation, we got a call. Aidan (Superman above) ran into the corner of a table and is getting a few stitches. The fun never ends.
All in all, stitches and snow aside, this day is going well. I truly hope we have surgery tomorrow. Blood oxygenization was lower than usual - less than 70 - when they checked.
1. In the strange world we live in - one where certain words can't be said at work- Martha said that we are blessed to have Dr. Tweddell. And Elliot says that this is in God's hands. I know. FIRE THEM!
2. Children's Hospital is under such an enormous bed crunch that surgery might not happen at all. Every morning at 6:30, there's a meeting and the doctors decide who gets help and who doesn't. If we don't get help tomorrow, we'll have to reschedule but Dr. Tweddell's December is very booked. So turn your prayers to that.
3. It's likely we'll just rescind the DNR and let them treat Zoe like she's a kid.
4. Elliott and we had a great discussion about my thoughts on Trisomy 18. He says that he keeps encountering situations where medicine has given grave prognostications that weren't accurate. He just isn't sure if this is one of them. He did agree that because the sample of live Trisomy 18 babies is "thinned," it's tough to truly theorize on mortality or treatment.
5. At the end of our conversation, we got a call. Aidan (Superman above) ran into the corner of a table and is getting a few stitches. The fun never ends.
All in all, stitches and snow aside, this day is going well. I truly hope we have surgery tomorrow. Blood oxygenization was lower than usual - less than 70 - when they checked.
Daybefore Blog
The snow was thick and wet and slowed everyone down. My cellphone alarm somehow didn't get us going. But we're here, in the waiting room and Zoe's snoozing.
I'm seeing four little darling kids in this waiting room. One in his surgical robe sprinting away from his dad. What are they doing Thanksgiving?
I'm seeing four little darling kids in this waiting room. One in his surgical robe sprinting away from his dad. What are they doing Thanksgiving?
Ted Update
Ted must be reading the blog because he commented back. I was told he would be lying face down, so I have visions of some special computer configuration. My mind wanders. Could he be wheeled around on a dolly with one of those masks like Hannibal Lector? I think even if the doctor doesn't require it, it'd be a cool way to be moved around.
thanks for the prayers Greg
I met with the surgeon yesterday and he said things went well during the surgery and that my eye is healing well, I have an air bubble in my eye and have to keep my head down for three weeks to ensure that the retina heals properly then another week upright. Anyway thanks again for the thoughts and prayers. And no matter what happens, I still believe we have all been incredibly blessed by God. I hope the move goes well. Talk to you soon,
Ted
thanks for the prayers Greg
I met with the surgeon yesterday and he said things went well during the surgery and that my eye is healing well, I have an air bubble in my eye and have to keep my head down for three weeks to ensure that the retina heals properly then another week upright. Anyway thanks again for the thoughts and prayers. And no matter what happens, I still believe we have all been incredibly blessed by God. I hope the move goes well. Talk to you soon,
Ted
what's coming
In a few hours i'll wake up and we'll take zoe through what the weathermen predict to be 1-2 inches of snow to Children's Hospital. We'll meet with the surgical team, the anesthesiologist, Zoe will get tests, and we'll have to revise our DNR to reflect our wishes for Zoe and this surgery.
Then, early in the morning on Tuesday, we'll go in for Zoe's surgery. We're told it will take around 3 hours.
I've run the gamut of emotions this weekend. Fear - I can't think past Tuesday to the rest of the week. Bargaining - why can't someone who has proven over and over again to fail like me take her place?
I'm so grateful to all of you for staying on for the ride. I'll keep you posted through the coming hours as to what's coming.
Then, early in the morning on Tuesday, we'll go in for Zoe's surgery. We're told it will take around 3 hours.
I've run the gamut of emotions this weekend. Fear - I can't think past Tuesday to the rest of the week. Bargaining - why can't someone who has proven over and over again to fail like me take her place?
I'm so grateful to all of you for staying on for the ride. I'll keep you posted through the coming hours as to what's coming.
Sunday, November 23, 2008
Hennessey Sets The World Record
Michael Hennessey has done it. Today at about 8:30 CST he crossed the finish line with his traditional two-step and now owns the world record for most Ironman finishes in a year.
I am so proud of Michael for his dedication and care for kids - one of whom is snoring behind me. I pray that God blesses Zoe with his physical determination in the coming 48 hours.
I am so proud of Michael for his dedication and care for kids - one of whom is snoring behind me. I pray that God blesses Zoe with his physical determination in the coming 48 hours.
Saturday, November 22, 2008
A Different Theory Part II
Sorry about the delay on the video below. We had...some issues. But it is up and available for you to view. Something I wrote and created along with Longhair, Nightman, St. Beneficencia, Mandi and Katefunk. It received a standing ovation at the F. Dohmen Company's 150 year Anniversary Celebration.
FYI...What I do. I write and think of video for people and companies, and then shoot and oversee the shooting and post production.
FYI...What I do. I write and think of video for people and companies, and then shoot and oversee the shooting and post production.
Tuesday
I've received a bunch of well-meaning, thoughtful questions about Wednesday, Thanksgiving, meals, rides. Will I need help moving? About where people will be or stay. For me right now, there are no days past Tuesday. I dread its approach. I need it to come.
She's Not Just Anyone
This song wrecked me today. I guess I've stayed clear of emotions and inner thoughts for weeks for a host of reasons. But you're going to get what's running through me for the next days.
He's My Son
by Mark Schultz
I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs Your help
I've done all that I can do myself
His mother is tired
I'm sure You can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there
Can You hear me?
Can You see him?
Please don't leave him
He's my son
He's My Son
by Mark Schultz
I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs Your help
I've done all that I can do myself
His mother is tired
I'm sure You can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there
Can You hear me?
Can You see him?
Please don't leave him
He's my son
Friday, November 21, 2008
Pray For Ted
Iain's dad and my brother at work, Ted, was rushed to the hospital today for emergency surgery on his eye. Ted is out of surgery and will be lying on his stomach for a number of weeks while he recuperates.
I don't know much more but please pray for our friend and brother, who has been a light to many.
I don't know much more but please pray for our friend and brother, who has been a light to many.
Monday, November 17, 2008
Chapter 40
So I drove up to my landlord's mailbox and put our notice into an envelope. "You ready?," I asked my oldest three kids, "ready for the next chapter?"
It's here. We've given notice and we're moving back to Cedarburg. God has found a place for us back where we used to live, closer to our support network, closer to my work. Closer to the blondie girls' school. Closer to the waterfalls and the five candies for a dollar store.
The trick will be moving while there's a heart surgery planned on the 25th of November. If God gives us Zoe past that date, it might likely be the big kids and me pulling it off. We can get into our new home on December 15.
Chapter 40. I never guessed that 39 would change like it did. I never saw it all coming.
It's here. We've given notice and we're moving back to Cedarburg. God has found a place for us back where we used to live, closer to our support network, closer to my work. Closer to the blondie girls' school. Closer to the waterfalls and the five candies for a dollar store.
The trick will be moving while there's a heart surgery planned on the 25th of November. If God gives us Zoe past that date, it might likely be the big kids and me pulling it off. We can get into our new home on December 15.
Chapter 40. I never guessed that 39 would change like it did. I never saw it all coming.
Sunday, November 16, 2008
Well, HELLLOOO!
Hi everyone.
Lightyears of time and space have transpired since I've written here free of the weight of some major projects at work.
So much has happened. I'll try my hardest to catch you all up.
Firstly, as I near the holiday, I want to thank all of you for your love, support, prayers. Thank you for thinking of me and asking after me.
God has been so good to me and this family.
I'll give you a quick Zoe update:
Name: Zoe
AKA: Zoe Bean
Weight 9 lbs, 9 ounces
Height: 24 inches
Likes: light, late nights, attention, her dad and her mom
Dislikes: darkness, daytime, cold, Kellen
Favorite words: goo, agoo, and sometimes, Dada
Eats: a special blend of formulas (Alimentum and A Lactose-Free sensitive), rice cereal, some apple juice
Lightyears of time and space have transpired since I've written here free of the weight of some major projects at work.
So much has happened. I'll try my hardest to catch you all up.
Firstly, as I near the holiday, I want to thank all of you for your love, support, prayers. Thank you for thinking of me and asking after me.
God has been so good to me and this family.
I'll give you a quick Zoe update:
Name: Zoe
AKA: Zoe Bean
Weight 9 lbs, 9 ounces
Height: 24 inches
Likes: light, late nights, attention, her dad and her mom
Dislikes: darkness, daytime, cold, Kellen
Favorite words: goo, agoo, and sometimes, Dada
Eats: a special blend of formulas (Alimentum and A Lactose-Free sensitive), rice cereal, some apple juice
Tuesday, November 11, 2008
Late Night At Avicom
It's 11:55.
Last night I left at 11:30.
I don't think I'm leaving tonight.
Too much to do, too much riding on this. We're attempting to make a feature-length production in six weeks. Someone has to pay and it's been the few souls at Avicom.
I'm trying not to think of the Blalock-Taussig Shunt Placement on November 25, of the upcoming changes to our home and location. Just this job, due in 39 hours. A huge task before us.
Last night I left at 11:30.
I don't think I'm leaving tonight.
Too much to do, too much riding on this. We're attempting to make a feature-length production in six weeks. Someone has to pay and it's been the few souls at Avicom.
I'm trying not to think of the Blalock-Taussig Shunt Placement on November 25, of the upcoming changes to our home and location. Just this job, due in 39 hours. A huge task before us.
Sunday, November 09, 2008
Ted's Son Iain
On October 27th - my birthday - my friend Ted (featured in this interview on the blog) and his wife gave birth to their son, Iain.
Please read the above interview and then you'll understand why I am welled with emotion sharing this news. I'm so happy for Ted and his family. I'm so happy that God has been so good to them.
Please read the above interview and then you'll understand why I am welled with emotion sharing this news. I'm so happy for Ted and his family. I'm so happy that God has been so good to them.
Lots of News
Hi everyone...I can't spill the news officially yet, but it appears we'll be doing a lot of things in the upcoming weeks beyond praying and hoping for our Zoe. As soon as everything is finalized, I'll let you know about another HUGE change about to hit our family.
Just keep us in your prayers..
Just keep us in your prayers..
Friday, November 07, 2008
November 25
Surgery has been set for Baby Z on November 25th. As mentioned before, we chose the shunt surgery and will be meeting with Zoe's doctor preoperatively on the 24th.
The days are flying by, everyone! The above is a post I didn't think I'd ever write. NOVEMBER 25TH. As in 8 months after she's born.
Pray for Zoe and the doctor and whatever this gift you and I have been given - to watch God fostering and securing a life beyond the experts' expectations.
The days are flying by, everyone! The above is a post I didn't think I'd ever write. NOVEMBER 25TH. As in 8 months after she's born.
Pray for Zoe and the doctor and whatever this gift you and I have been given - to watch God fostering and securing a life beyond the experts' expectations.
Tuesday, November 04, 2008
Pray for Marcia
My friend Marcia wrote me today to announce that her baby, Makayla, was born on October 21. Makayla wasn't alive when she was born.
Pray for Marcia, who has some peace with her daughter being called home, but wonders if her daughter is at peace.
Pray because if you never face what Marcia faced or faces, you'll be blissfully ignorant. Sometimes there isn't a place in your heart for all the pain and questions.
I wish I could give Marcia a hug and I wish she could hold the life given me these 227 days. I am grateful to all of you for helping me hold her. I am humbled, I am confused why I am blessed to listen to a baby's cry and Marcia seeks peace in the stillness of each night.
Pray for Marcia, who has some peace with her daughter being called home, but wonders if her daughter is at peace.
Pray because if you never face what Marcia faced or faces, you'll be blissfully ignorant. Sometimes there isn't a place in your heart for all the pain and questions.
I wish I could give Marcia a hug and I wish she could hold the life given me these 227 days. I am grateful to all of you for helping me hold her. I am humbled, I am confused why I am blessed to listen to a baby's cry and Marcia seeks peace in the stillness of each night.
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