Home

I was away on a business trip yesterday, and when I landed I received a single word text from Jen: "Home!"

Home again. And Jen put Zoe on the bed, who looked around and smiled and smiled.

Home and tests - all of them - showed us a healthy baby, no causes of seizures found. For me, that's great news. For Jen, it's a little troubling. What happened?

For now, we're satisfied. Back to long nights, but Zoe's content and we haven't seen a seizure or abnormal movement since last Friday.

Ethan and Aidan's Prayer

Driving away from Children's and Aidan gave a rather loud whiny harrumph. "I just want mom and Zoe to go to home," he said. And he started to cry.

Ethan started to cry, too. He never gets to see mom every day, he said.

So we prayed tonight really hard that they're released soon.

Tomorrow's Test

I'm back in Zoe's room. Time Warner Cable has informed me that they will not come out and repair their faulty equipment until tomorrow, so our house is internetless.

Let me put it this way: we went without water for almost 18 hours and it stunk, it was hard, but I'd much rather go without water service than internet.

So...Zoe's room has Zoe, and internet.

Zoe's tests today showed again, nothing out of the ordinary. At this point, the doctors have found nothing that stands out as a cause of seizures. Tomorrow, they'll perform an MRI, and we do ask for your prayers because they'll be sedating Zoe. She doesn't do well with sedation.

status

Jen: snoring. Zoe: looking at her hand. Her hand is still pretty amazing.

Echo!

Zoe is just too tired to fight the tests. She slept through the echo, and the results show that the shunt is working great, and that her heart is working well. No cause of seizures there.

Earlier today, her CT came back clear. Neurology noted a little more fluid than they expected in her head, but I'm pretty paranoid, and I still didn't hear any worry there. So they'll show some surgeons, but nothing in the CT that showed trouble, or causes.

Zoe's still out. Jen is curled up on the sofa thing. Still daylight here.

Almost Ran

Jen called early this morning and said she'd been up all night with Zoe. Standing next to her crib. She was tired and wanted me to help her out. By the time I was ready, she called to tell me to forget it. Dr. Chatton was there, and tests were already being scheduled.

Zoe was crying probably because she isn't used to sleeping alone; because she was very very constipated and they worked on that with her until almost midnight; and because this is how it goes at night.

Keep praying - EEG today.

Back To Children's

I got a phone call from Jen today as Zoe had another seizure. Or whatever it is. I listened to Zoe wailing and Jen trying to calm her. By the time Jen got her eyes to focus and Zoe's crying had somewhat abated, over six minutes had gone by.

Jen called Dr. Frommelt and Dr. Chatton. Doctor Frommelt, who if you have followed this blog has become Zoe's true medical patron, talked to Doctor Chatton and Zoe is being admitted to Children's tonight to undergo tests and determine what's going on. Doctor Frommelt believes, based on what she has heard, that these are seizures. She says that Zoe who is in otherwise good health, and this needs to be dealt with.

So Jen and a very sad Zoe drove off into the night at 8:30. I'll keep you posted.

Satisfied Again.

From Cathy's blog:

"Some of you may remember in an earlier post, we were asking for prayers for her, her family, and little girl to be born with Trisomy 18. After rounds of testing, they found her little girl to have multiple health issues. I recieved a call today that her little girl is no longer alive. Please keep this family in your prayers as they make many decisions regarding their little girl."

Everyone, time to hug your kids. I'll hug the little bug snoring next to her mom. And pray for Kathleen. And Preacher Shane as they both look to Heaven from this broken world.


Your kingdom come, your will be done.

Satisfied

This world stinks. All by itself, without us sinful people polluting it. The premise stinks. Then you add us.

This world stinks and that's why little babies are born, little babies who did nothing to anyone, they're born broken and torn. These babies fight beyond their strength, and their parents fall on their knees and pray to trade places with them, pray just that the world would only stink less and that there are a few more days when you could watch your baby live and breathe. They beg God.

But that's not the plan, not what's best. We parents are too easily satisfied. Leaving the baby, broken, in a world even more broken isn't what God wants for any of us.

C.S. Lewis puts it this way:

If we consider the unblushing promises of
reward and the staggering nature of the
rewards promised in the Gospels, it seem
that our Lord finds our desires not too
strong, but too more weak.

We are half-hearted creatures, fooling about with
drink and sex and ambition when infinite joy
is offered us, like an ignorant child who wants
to go on making mud pies in a slum because he
cannot imagine what is meant by the offer of a
holiday at the sea. We are far too easily pleased.

So what pleases me would have been that Preacher Shane's boy would have lived to fight another day. I am crying. I am upset and I am grieved. What would have pleased me is that he would have fought for his breaths, fought every night for his life against his own cells.

That didn't please God. He wanted Michael Z. to come home to him and be whole. And run and laugh and praise. God wanted it to start yesterday.

How Is Zoe?

Zoe And The Abnormal Movements

I was in a meeting yesterday with a client and I received a text from Jen. "Call!," it read. I texted back..."Are you okay?"

The answer: "No!"

I slipped out of the room and called. Jen was sitting on the bed when she heard Zoe's breathing quicken and then she started to wail. Zoe's arms were stiffened, extended from her sides. Her eyes were rolled back.

Jen grabbed Zoe and tried to calm her, but the episode went on for another minute before Zoe started to relax and her cries changed from yelping to fear.

That's when she texted me.

I flew home and by the time I was home, Zoe was very - Zoe. She recognized me and was even a little smiley. Jen had called the doctor, who recommended we go to the ER to have them assess and determine what went on.

We went to the ER. One thing Children's Hospital can change - and truly, my sole criticism - is how we tell the person at the door the story, the nurse where we fill out forms, the triage nurse, then another nurse, then after waiting, the next nurse, then, the nurse who replaced her at shift change, then the resident. I'm not kidding. We had to repeat the same story that many times.

The doctors ordered blood work, which resulted with nothing. It looked normal. So the doctor came in and told us they were writing "abnormal movement" on the chart and sending us home. They requested that we set up an appointment with a gastrointestinologist and a neurologist so they could assess to help determine what went on.

The whole time while waiting, Zoe was fine. Content. Held. Cozy. Sometimes even smiley.

Truly, worse things have happened at Children's. This was a pleasant surprise. We begin making the appointments for Zoe today.

A Christian Nation

This post - which I wrote rather innocently - garnered as many comments as any post I've ever written at this blog.

The phantom commenter noted, "A Jewish person most likely wouldn't express his or her outrage that the Brewer game was on Yom Kippur, because they know that Christians in this country work every day to create a bias against any religion but their own."

So...what do you suppose this means?

h/t Ironman...

To Narnia And The North

It's a hard thing to reconcile because so much of us was poured into this trip. So much sacrificed, so much offered, so much lost. And so much gained and enjoyed and given to remember. And we're loading up the van today.

In about a month, Teia graduates and then whatever God wills for Teia happens. I guess to a degree, that statement is true for all of us, but God has led Teia to a crossroads unlike any other child of mine.

And then like the fine quartz sand on these beaches, over the next few years, the other children slip out of my grasp to wherever. My heart is heavy.

every morning

went walking down the beach today with Jen. I really wanted one of those cool spirally shells. i just couldn't find one.

somewhere, halfway down the walk, i gave up trying to find the spirally shell. i don't know what they are, what creatures they are, but they didn't frequent that beach, that day.

i stumbled across some really cool things, some fragments of things that at one point were awesome. some things that were striped and calicoed when wet, but turned almost completely white when dry. i found one shell that looked so perfect, i inspected it closely to see if it was fake.

i've been wrestling with telling you this story because i don't want it to ever make it sound like i'm ungrateful to my dear friends Ted and Gina. and the more i think of it, the more it fits in this thought, so here goes.

a week ago, we packed it all. packed the coolers, checked the lists, contact cases, extra power cords. borrowed an inverter from the Maziarkas. everything was set. the kids got in, and Jen got in, and i figured we'd run to Walgreens and get one last prescription for Zoe...then pray, then drive off.

so i turned the key.

click.

turned it again. click.

nothing. no lights, no nothing.

kids thought i was teasing but i told everyone to get out, dispatched jen to walgreens. Ethan started to cry, but I'm finding older sisters have a stock phrase. I've heard Teia say it to Selah, who has barked it at Ethan. And it sounds reminiscent of something Deirdre has said to me. "You're ok. You're fine."

the kids went inside and made whatever was in the fridge. I pulled the almost brand-new battery from our minivan, put it in the 15 psgr van, and we drove away.

sometimes life isn't what you think. it's not even close. but if you don't get wound up in the expectations, you'll find a little bit of beauty - maybe the treasures you were supposed to find. like a crew of kids who just suck it up and get out of the car when it doesn't start. like friends who have held me up in prayer, supported me with love, money, food, favors beyond anything i could ever explain. i drove Ted and Gina's van a couple thousand miles to get here! I'm not sure what they get out of it.

in Lamentations, the author says

" 22 Because of the LORD's great love we are not consumed,
for his compassions never fail.

23 They are new every morning;
great is your faithfulness. "

This life and all of its trials could permanently swallow me up. But God's mercies - the transliterated word is actually akin to "kindnesses" or "goodness" - are new every morning. Sometimes you don't see its beauty until its wet.

Shelling At Dusk With The Bats

Just For Fun

I had so much fun putting the picture together that I thought I'd show you a true vaca pic...just feels right to give it the film grain and distressed palette.

Your Favorite Baseball Player Update

Ok, so it's not a huge amount of innings but let's crow when it's time to crow. How's this line for Chris Sampson? 2 Games, 2.1 innings, WHIP .43, ERA 0.00 !

Kathleen Hards - Prayers Answered

Kathleen wrote me Friday and told me she found a doctor willing to go the extra mile with her.

She has switched doctors to a group who have been great to her. They've been going over details of her baby's condition that obviously were unknown by her old doctors or the doctors didn't feel necessary to share with her.

She says she's been able to sleep for the first time in a long time.

A quote from her note to me: "I think now, having this new information, I can hand over my pain without feeling guilty that I hadn't tried everything humanly possible."

Please keep Kathleen and her baby in your prayers. You all are incredible and God heard our prayers.

Destin 2009 Episode 7

What we did in the first two hours we were here is the reason we came.

Easter 2009

I asked Kellen to find some Easter Bible verses and he overachieved by finding several and then giving us the reason he chose the verses he chose.

I told the kids that if you know me, you know how much I like to argue from a position of being right. And no one, no one with money or power or motive or means...no one has ever been able to produce Jesus' body. Because Jesus is alive. And if He's alive, we will all - all of us - have to deal with Him. What will you do with your Risen Savior?

Then it was out to the beach for all of us. Zoe even went down to the water's edge with Jen and the rest of everyone, as Aidan would put it, "Played." Sand castles, hole digging, body surfing.

Then we got really lazy. Actually, we still are. back home, some jumped in the pool and the rest have been grazing and just hiding, mostly. Quiet. Nice.

The Digs

Selah takes you on a tour:

Destin Episodes 2-5

What Language Shall I Borrow

What language shall I borrow to thank Thee, dearest friend,
For this Thy dying sorrow, Thy pity without end?
O make me Thine forever, and should I fainting be,
Lord, let me never, never outlive my love to Thee.

Destination Destin

We're loading up St. Ted and Gina's van - with Michael's tom tom and the other Michael's DVD players and Jen's mom and dad's gifts, with a lot of frozen meat for cooking and cheese and let's just see if we can get there and getting out of here. You'll hear lots more from us on the road. I'm 24 posts from 1000 for this blog...and excited as we get closer.

Pictures and video to come.

Your Favorite Baseball Player Roars!

Koufaxesque line in last night's game:

C Sampson (H, 1) 1.0 0 0 0 0 0 0 7-5 0.00

God Bless The Ironman, Part II

"We're not trying to fix these children...we're just trying to love them."

If you have 8 minutes, listen to the Hennesseys speak...pray for them. Thank you, Ironman and Janelle.

God Bless The Ironman

Just read Michael Hennessey's comments on the last post. Gosh, I love that guy. A heart for service, for kids like mine. A heart for the Lord. And a fiendishly great athlete. Please take 3 minutes of your day and click play. He's our Ironman. He's legit.

Holy Week

This year, the Milwaukee Brewers have chosen to have their home opener on Good Friday. For those of you around the world and not from the Land of Cheese, Opening Day is capitalized. It's Mardi Gras without the history and the parades.

Like Mardi Gras, some of the locals stay clear of the hard core celebrations because they're just too out of control.

It's just weird that the team would have allowed it to happen. But not surprising. I remember back when I worked at the movie theater, some 20 years ago, and Maunday Thursday was a huge movie night. Most everyone had off the next day.

It's consistent that our culture would move from the truly faith-affirming and deeply moving time of Lent. And true evidence of Satan's influence that we'd continue to forget the power of Holy Week.

For me, the only way I can enjoy Easter properly is to observe Good Friday. Try, if you can, to hold on to the beauty and love you'll find when you hear the old story. Given and shed for you. For me.

What If They're Just Babies Who Need Help?

Japanese physicians are operating on Trisomy 18 babies with heart defects - with positive results! (h/t Victoria Miller)

Welcome To The Plateau

This week has all kinds of chutes and ladders. You make it way ahead of the others and then BLAMMO! you hit that big slide that puts you way in back.

We're all playing on the same board, but I think we get deluded and think 1) I'm not playing on it (the ever-sinful "it won't happen to me") or 2) Others should know how to avoid those chutes!

We know SO WELL how other should behave, don't we?

Zoe is doing really well - except she's not growing. She's plateaued at 12 pounds, and I am asking you all for prayers that she grows. She is sleeping well. It's just that the sleep is from 4 am to late morning, and it's really a problem for Zoe's mom and dad.

I know it sounds like I've been saying this a long time - but it has been. This has been a long, long year for Zoe's mom and dad. I have no idea, except for your prayers, the prayers of the faithful, why we have made it.

Preacher Shane/Michael Z Update

Preacher Shane in his blog:

Our c-section was scheduled for 10:15 yesterday morning but Michael had other plans and decided to come early. He was born at 7:09 am weighing 4lbs and 0 oz 16 3/4 in long. He is now facing a great battle with all the health issues and medical personnel that are less than willing to give him a fighting chance.

Michael's heart troubles are different and more serious than what we thought. He will require heart surgery before he can go home, but he is too small for surgery right now and they will have to do surgery on his intestines before they can do the heart surgery. Right now he is not stable enough for any type of surgery. Please keep him in your prayers.

***My note: notice what happened here. The doctors said that the baby wasn't stable enough for surgery. What they didn't say is: this water fountain isn't for you/get in the back of the bus/you don't get health care because of your genetic matter.

And yes, I'm making that statement. If you want to debate me on this, bring it on. Let's end discrimination in this country against those who are weakest and need our help the most.

New Comments/Design

As you guys know, I've been tweaking design and adding some stuff for you and me. One reason is we've just plain got so much going on..and I needed more room for more info. Another reason is the last template I chose didn't work with some browsers.

I've also added a new comment software that I think you'll like. Tell me if it works and what you think. I'm very excited about the potential there.

The coolest part is if you have a Facebook account, you can log in by clicking that "Facebook Connect" button...and then we see your profile pic, and you can do linking between this and Facebook.

It's all part of, as Batblog friend Dan says, the "doubleyahdoubleyahdoubleyah."

Pastor Shane

Haven't heard anything since this Facebook post from yesterday:

Just spoke with the NICU Dr. things are not good Michael Z needs your prayers now more than ever. He has a very hard battle ahead of him.

This from Preacher Shane's blog:
From our visits with the perinatologist and the neonatal cardiologist we have seen that Michael has an omphalocele (a portion of his intestines and possibly some of his liver are growing out into his umbilical cord), heart defects-a DORV (double outlet right ventrical) and an AV canal, his right foot is turned in, and his hands are clenched. The heart defect can be corrected with surgery after he is born at about 3-6 months of age. The omphalocele can also be corrected with surgery. 95% of the children with Trisomy 18 don't carry to term and if they do, many don't survive the first year. As you can imagine, we are saddened that our son facing such insurmountable odds, but we also believe that God is still in control and can heal our son, if He so chooses.

Pastor Shane Update: Alive and Stable

Michael was born at 6:09 our time. He weighed 4 lbs, is stable and in the NICU. Mom is resting and in recovery.

If you'd like to leave a note, you can follow his twitter feed at @preachershane .

Pastor Shane

just changed his Facebook status to "just got a call from the OB...the c section has been moved up to 10:15 tomorrow morning"

Please pray

Another Provocative Comment

Anonymous said...

At what point do you hand this over to God?

6:45 AM

Answer: My sincere hope is that you see everywhere on this blog a mom and a dad and a family that have been constantly turning this over to God.

I have never, ever wanted to be a poster child or the leader of a cause. I am roundly criticized because I obviously lack all of the polish and ability and grace required. Jen and I have stumbled and we've cried, and we've missed deadlines and bills and misprioritized, reprioritized, been underresponsive and sometimes oversensitive. We are flawed.

We need God. We need Him desperately. And I hope you see that in all the things we talk about and write, we are broken people living in a broken world, all of which needs God.

Sometimes, with His help, we assemble a few broken pieces and see how they might have fit together. I see a culture that has decided to throw away life. And I feel like I'm stepping into the gap, answering God's call to decide if our culture is right or wrong in its current stance. Frankly, letting you all know about Kathleen and what's happening and what I think...I feel that's my obligation.

For Kathleen, I am confident she has been turning this over to God with every breath. Turning it over and waiting for His guidance and His plan. Sometimes we are called to act. Sometimes to wait.

If what we've been writing appears faithless and Godless, I apologize and will try harder to show how big a role God has played in who I am and why Zoe is alive.

A Great Enough Comment To Post

Back in 1964, (the dark ages of neonatology, if it even existed as a specialty) 10% of babies with tri 18 lived past a year and 1% past ten years.

Today, the statistics have worsened, not improved, despite incredible advances in neonatology.

In 1981, a geneticist put out a call in the Am Journal of Genetics for all cases of tri 13 or 18 in which the children were older than 10 yrs of age. Imagine that!! He wanted to understand why some kids die young and others don't. That was smart thinking!

Then genetic testing and termination advanced. The most recent article about trisomy 18 (last summer) states that is is "unethical and contrary to the child's best interests to resuscitate a new born with Trisomy 18 for whom a cardiac condition has been detected prenatally." Imagine that!!

The article (published in a major journal called Pediatrics), went so far as to say that any neonatologist who resuscitated was acting based on the parents demands and contrary to the chld's best interests.

What is interesting about it all is that what is clearly a judgment on quality of life has, over the decades, worked its way to disguise itself as a medical definition.

The following article, written by leading American MD/EThicists (and heroes, in my mind) explains it well:

http://livingwithtrisomy13.org/Koogleretal.pdf

In this video, a man describes having to fight for his daughter's life (trisomy 13) when the staff covertly tried to allow her to die.

She is now a beautiful 7 year old walking independently thanks to the efforts of her family.

http://www.youtube.com/watch?v=UNzJt8fbavo&feature=related


Barb
www.anniefarlow.com

Pray For Preacher Shane

Preacher Shane, as you can tell from his blog, is a dad and a preacher. On Friday, he and his wife are set to have their Trisomy 18 baby in Atlanta.

Please, everyone, pray for Shane and his family.

Your Favorite Baseball Player Follow Up

First, based on this article, Chris Sampson is set to return as a reliever for the Houston Astros. Which means he retains his title of Your Favorite Baseball Player.

Secondly, Brooke, Chris's friend, wrote to follow up to this post about the birthday video they sent for Zoe.

"…and Heather brought it to my attention! Even though I included her on the YouTube description, I forgot to tell you that Heather’s sister ZOE (yes Zoe, Zoe Parker) was the one behind the camera. It was easy for us to sing to look at “Zoe” because there was another Zoe holding the camera J

But just the timing of our trip (being over baby Zoe’s birthday) – WHO we were visiting – and the fact that Zoe Parker was visiting during that time seems more than just coincidental to me. Don’t you agree??

Lastly – here are the pictures of the cake and of us enjoying the cake (my favorite is of J.R. eagerly waiting while Chris cuts the cake)

Brooke"

Jen and and all of us Bats are so blessed to know you all. I wish I could quantify what it means to feel love from every corner - family, friends, work, Houston Astros. I said it before : you all are Zoe's birthday present.

Billy Wins Gold!

Barb from Melbourne wrote me this:

"Hi Greg and clan,

Just thought i'd let you know that Billy competed at the Victorian State School Finals today and picked up Gold for 50m Backstroke! Zoe is his good luck charm! he said he was proud to win it in honour of Zoe and even let me take a picture of him with his gold!

take care Barb and Billy in Melbourne xx"

The Point

Kathleen emailed me to report how tired, confused, exhausted she is. How she wonders if she's doing the right thing. She received an email from SOFT indicating that the only two surgeries they know of on children with similar conditions did not end well.

I looked at some of the comments I've received and on this blog and realize that many people are figuring that 1) Kathleen is distressed, and not rational, and there are, in fact, doctors who will help her, but she just feels like they're all against her child's condition 2) Maybe you just let this baby go.

The point with comment 1): In my interview she said three told her that because of the baby's condition, they wouldn't do anything. I asked further, and she specifically mentioned one who said no doctor would help because of her baby's condition. She also said that every physician involved advised that she abort.

At the moment a doctor begins to tell you you're wrong, you doubt. And you feel like a grassy knoll theorist for doubting. You wonder if you're being irrational. You wonder if you're being selfish. You know that doctor ostensibly knows far more than you.

Jen told me "even if one (doctor) says no- as a parent you start questioning if you would be horrible to try something. when (zoe's pediatrician) was mad (the instance where this pediatrician had a nurse watch Zoe's older brothers in a separate room so she could scold Jen for over 20 minutes for pursuing heart surgery)- i felt a little guilt for wanting to try...it became a big stuggle in my heart...am i really doing the right thing? you want to trust the docs are doing what's best. if i would have listened to her my daughter would be dead right now from heart failure that could have been fixed "

One consistent comment I hear is a linkage between an elderly cancer patient or Alzheimer's patient or terminal patient and Kathleen's baby. I find the conditions not analagous. The elderly patient is available for study. There have been millions of living people with terminal conditions studied. There are scans, tests, and a wealth of history from which physicians are drawing.

Practically all - and by that I mean over 90% - of Trisomy 18 babies are aborted. So, any conclusions about the remaining small percentage represents, in my opinion, a skewed sample. What percentage of Trisomy 18 babies are like Zoe - need help to breathe at birth, and then are capable, with love and sacrifice, of living for a year? The doctors don't know. They don't.

Which leads me to comment 2). I am not advocating that Kathleen HAS to do anything. What I'm saying is right now SHE IS NOT GIVEN A CHOICE. What if she believes her daughter should have a chance? The doctors are telling her she has none - not because of the surgery, but BECAUSE OF TRISOMY 18. I guess this is where I write the above paragraph again.

Doctors told us that maybe we didn't need to turn on the jaundice lamps; that maybe we didn't need to feed her too much; that maybe we shouldn't treat an ear infection; that pursuing a heart surgery was selfish, that Zoe would "Always be like this." Not because of the patient, but because of the condition. The patient is snoring next to me right now.

That's the point. The point is that Zoe would be dead if we weren't given a chance. Parents are not being given a chance to decide. And that's wrong.