Monday, March 30, 2009

Kathleen's Story

"We have been told that her hernia is fixable, but that because she has a Trisomy 18 diagnosis, there isn't a doctor out there that will touch her. "No doctor will touch her." Straight out of not one, but three doctors' mouths! "


From Kathleen:

My name is Kathleen. I am 36 and I have been married to my husband Dusten for almost 13 years. We live in Fort Worth, TX have three beautiful girls, ages 7, 4 and 20 months. Dusten is a firefighter/paramedic and I am fortunate to be able to stay home to be a mommy to my kids.
I had never heard about Trisomy 18, or any trisomy for that matter until we were given our diagnosis. Our OB/GYN's office had called, telling me they wanted me to come in and talk to the doctor. We live about 30 miles away and I told her that I would rather talk to the doctor on the phone, that the nurse was scaring me. After quite some debating, she put our doctor on the phone.

She informed us that our blood screening came back positive for Trisomy 18, and that was serious. She told us she would schedule an appointment with a neonatologist who would conduct a more specialized sonogram. Our OB/GYN told us we needed to start preparing ourselves for what lies ahead, and that even though a positive screening result doesn't confirm a diagnosis, it still could have a negative outcome.
At 24 weeks, the very next day we went for our specialized sonogram. Before going in, a genetic counselor tried to tell us a little bit about Trisomy 18 - what it meant and what markers the doctor would be looking for. She also suggested that most people terminate their babies if they are found with a positive diagnosis. We were scared to death to the say the least, all before even going into the sonogram.

The doctor found many of the markers associated with Trisomy 18: cysts in the brain, a hole in the heart, a diaphragmatic hernia, and clenched hands. With all of these markers present, a Trisomy 18 diagnosis was most likely positive, but we would only know for sure through an amniocentesis. We decided to to have that done, and would wait several days before finding out the results.

In the mean time, while waiting for the amnio procedure to be done, we went back to talk to the genetic counselor who told us that it was our choice to terminate the pregnancy or carry to term. If we terminated, she could put us in touch with grief counselors and such, but we if chose to carry on, she couldn't not offer any further help. I think this made me more furious and fearful than anything. I don't think my husband and I had ever felt so much alone.
Because I am a very positive person and because of my faith, I knew the only decision for me was to carry to term. We knew we might not make it to a full 40 weeks, but we would try and make it as far as we could.

Unfortunately, we have been surrounded by doctors, counselors, nurses and people in general who would rather wash their hands of this pregnancy and I have yet to encounter anybody who is willing to treat me and my daughter with a little compassion and treat us a human beings. My OB/GYN, my perinatologist, and then the neonatologist have all pushed us to terminate the pregnancy early on. They kept telling us that our baby would not be viable and that there would not be any quality of life should she be born alive. We even had the doctors calling us at home days before the termination cut off date, asking if we were sure that we didn't want to terminate.

And yet the whole time, we really weren't being told how to progress with our decision. Once our amnio results came back, I surely thought we would have another meeting with the genetic counselor to explain things further, to at least clarify which type of Trisomy 18 our baby had and what we should expect down the road. No such thing. The counselor said she couldn't help us or provide us with any other information. I even clearly remember that the sonographer told us not to research this diagnosis because there was too much false information on the Internet.
I am the last person for a doctor to tell me what to do or not do. For the past couple of months my mother and I have been trying to research all that we can to see what is actually available for our baby girl. We have read the statistics and the stories about the deaths and lives of babies affected by Trisomy 18. Not all of them die! And it makes me wonder that if some of these babies had not been denied treatment, if the statistics would be different.

I fully understand that there is not a magical pill that will change the mental retardation part of this diagnosis, but no one can guarantee me the severity at which my daughter will be affected. I understand that my daughter may not benefit from certain procedures, but no none can guarantee me that she might not take well to them. Surgery may work for her, it may not, but not one doctor can guarantee me any kind of results. In my eyes, doesn't my daughter, doesn't every baby, deserve a chance at life?

We have been told that her hernia is fixable, but that because she has a Trisomy 18 diagnosis, there isn't a doctor out there that will touch her. "No doctor will touch her." Straight out of not one, but three doctors' mouths!

I have been told that our children's hospital here in Fort Worth has a pediatric cardiologist, a hernia surgeon, and a great NICU with ECMO that would benefit a healthy baby should they be born with the defects that my daughter has. However, because of her Trisomy 18, they will not operate on her.

I have been told that the hernia has pushed her stomach and digestive parts through her diaphragm, into her chest cavity, which is compressing her lungs and pushing her heart over to the side. If she is born alive, the first thing she will do is try to take a breath. With the compressed lungs, it will be hard, or nearly impossible for her to breathe on her own.

I have had 2 NICU nurses tell me that if a hernia surgery is to be performed, it has to be done right after birth, that my baby girl would need assistance in breathing until the surgery can be done. It is an immediate procedure. On the flip side, the doctors are telling me the best we can do is try to let our baby girl breathe on her own, that she will hopefully pass with peace within 30 minutes to couple of hours. They have told me there is nothing they can do, that Trisomy 18 is basically a death sentence and we can try to keep her warm and hold her as long as possible.
I can't believe that with all of today's medical technology and equipment, that doctors have the power to attempt to save lives, but that in my case, it seems like they have chosen not to help those who are less than perfect. I understand that my baby girl will have issues, and the she might not survive the fight in the long run, but doesn't she deserve a chance?

I feel like there are so many what ifs and there are so many kids who have been born with Trisomy 18 and have lived. Do the doctors not realize this? Do they not care? I know what statistics say, but I also believe that each case should be handled on an individual basis. All I am asking for is a chance.

All I want is my right as a parent to do what is best for my child, and I believe that giving her a chance is the one thing I can do, and perhaps that one thing that I can have control over. I have to try. Miracles do happen.

Friday, March 27, 2009

Our Social Media Experiment

I am officially the director of Social Media at my job.

Let's make helping Kathleen Hards our experiment. As I mentioned here Kathleen has asked for our help to find someone who will NOT save her child or give her some kind of false hope.

What she wants is for her child to be treated like a child. Not an ogre. Not a dead person. But as a child. If Kathleen's child was a normal baby, they'd help her. But because baby has Trisomy 18, medicine - to this point - is not going to help.

Can we find someone? In Ezekiel, God says, " 30 "I looked for a man among them who would build up the wall and stand before me in the gap on behalf of the land so I would not have to destroy it, but I found none."

So our experiment will be: email everyone you can and link them here so they can read Kathleen's plea. Tweet. Blog. Facebook. Let's find an answer. Let us be the cloud of witnesses sent to come to Zoe's friend's aid.

This Is Happening.

Yeah. It's happening. It's 2009 and we have a system and physicians who will not help the weakest and most needy.

I don't know the whole situation, don't know the entire story. But please, let's find a doctor who will give Kathleen Hards a chance.

URGENT. Help Zoe's Friend. Now.

I've been blessed by all of you. And so many of you have gone above and beyond to come to Zoe's aid, to help my family.

Now I'm begging you to help Kathleen Hards in the Dallas/Ft Worth Area. She writes:

After meeting with a new doctor, I really thought we would find some hope.

Apparently not. Be are told that because of our baby's diagnosis, there isn't a doctor who will touch her. Our little girl has full T18 and a diaphragmatic hernia. In healthy babies, they would perform a hernia surgery almost immediately to relieve the pressure on the lungs so the baby can breathe.

But with a baby who has T18, forget it.

I am crushed that the doctors won't even give her a chance. That's all I want for her - to have at least a chance at life, and we are being turned away meeting after meeting. I even got a few phone numbers for Dr. John Carey, if you have heard of him, but haven't heard back from him to see if he can shed some light on anything.

I hate to give up, but maybe we just don't' have the resources to get what we need. I am at 30 weeks now, and the doctors are fairly sure she will come early, probably anytime before 37 weeks. I feel like I am running out of time. If you have any thoughts, let me know. Otherwise, thanks for listening. I know you understand.

So many of you have asked me what you can do. God has given Zoe his protection and blessing for today. Help care for Zoe's friend. Friends, I can't tell you this little person will live four minutes or four years. But I do know that we are being called today to protect and care for this baby.

Our hope comes from the Lord. His help comes through us, working together, working hard, working NOW to come to this little person's aid.

Reach out to any doctors you know. Please contact me as soon as you can. Let it start tonight.

Dear News Graphic,

If you had any sort of modern newspaper system, I could have directed a couple thousand views to your site. They would have seen the ads, which would have made your advertisers happy.

But, you can't give me a link, I can't embed the all I can do is put these scans from the front page up on my site. Sans ads.

Pretty cool story.

There Is A Call - Robbie Seay

Mobile post sent by gregwork using Utterlireply-count Replies.  mp3

Exclusive - Robbie Seay sings a song he hasn't released at Zoe's concert last year. Enjoy.

Teia Made A Slide Show

Zoe Slideshow by Teia from greg batiansila on Vimeo.

And Vimeo let me put it up.

Thursday, March 26, 2009

Teia Made A Slide Show

...of Zoe's pictures for Zoe's birthday. Thought you'd enjoy it.

...but YouTube doesn't. They have turned the audio off so I pulled the video down.

Sorry folks. (By the way, Youtube isn't sorry)

A Million Bucks

...that's what Dr. Frommelt told us that Zoe looks like today. Her sats, her pulse, her BP are all great.

Dr. Frommelt kept telling us how good she looks.

Thank you for your are her Birthday present.

Tuesday, March 24, 2009

For those who wish to debate "quality of life"'s mine! (proud mommy)

Monday, March 23, 2009

b-day pics

A beautiful 1 year old princess! With more pics to come...

Barb's Son Heats Up The Pool!

Barb writes:

Hi just got back from the pool! Billy won 1 gold and 2 bronze , Zoe is good luck ;0) he will be racing again on the 2nd of April in the state finals. Hope you guys had a great day, we did.

Sunday, March 22, 2009

Birthday Greetings From India!!

From: gene pereira (Kerala, India)

Hi Deirdre
This is to wish little Zoe HAPPY BIRTHDAY!
Regards gene

(Gene's kids are pictured above)

Your Favorite Baseball Player Sends A Video!

Brooke from Avicom, sweet sweet Brooke writes...

Here is the video that we posted for Zoe's birthday! In the video (from left to right) you will see J.R. Towles (Astros catcher) and his wife Brittany. My friend Andrea and her boyfriend Keith. My husband Robbie. Chris, C.J. and Heather Sampson. Then me :)

Guests, Guests

how nice... josh was sick but he came! Nick from work, Michael and KateFUnk. Room full of fun .

Food's Here!

And St. Mipps...Tracey and Jaime just rolled up. Erik from your favorite catering place Out and Out showed up with some eats. Izzi's iPod is playing the hits, kids are playing tag.

Jen chose quite a 1st birthday get up for Zoe. Video to follow...

Out of Church

Jen's picking up some balloons and we just set up the DVD of the Josh/Robbie Seay concert from last year. Kellen's setting up Wii for the hordes of kids.

Terry and Chris and Jen have already been here hanging streamers and stuff.

Renee says she got a late jump. Looks like most everyone will start rolling in at 1 ish.


And Zoe's crabbing for a bottle. Jen gently wishes outloud Zoe had timed it with Jen's alarm. I got Z the bottle, made coffee and threw the sticky buns in.

Food At The Party

Eric from Out and Out Custard emailed me to give me the list of food he's going to donate to Zoe's Party.

Roast Pork
Mashed Potatoes
Steamed Cabbage with Butter
Green Beans
Tossed Salad

Sound good? Out and Out caters. I think between this menu and Amy's pie, I'm pretty hungry.

Out & Out Custard & Sandwiches
W61 N305 Washington Ave.
Cedarburg, WI 53012

Just Looked At Zoe

...and said, "You did it."

The Hunts Offer Up A Mini-Series!

Amy Hunt and the other Hunts lay down the video gauntlet. In this episode, Amy made me kind of hungry. I think the post office should consider allowing this kind of mail. It might make me actually open a snailmail letter.

Hunt II : The Puppy

In episode 2, the Hunts show they have obviously never met Greg. Also, Cliff finds a cigarette in Theo's schoolbag.

Saturday, March 21, 2009

Hunt III: The Post Office

Episode 3 of the viral smash. I'm proud a federal worker was actually included in this video.

The Hunts: Episode IV

The Hunts entitled this "The People." Which is cool because it features people.

Tender Tennessee Wishes

Some Tennessee friends send in a video...

Birthday Wishes From Down Under

my 14 yr old son Billy is going to swim in honor of the beautiful Zoe, sporting her name for his 3 races! we will let you know how he goes and send you a pic, hope you have a great party, give Zoe a kiss from us, Barb (and Billy) in Melbourne.
attached is an under water pic of Billy taken just before he got his first National time with a message for Zoe xxx
-Barb in Melbourne

World Record Holder And His Ironman Family With Birthday Wishes!

Okay, this was done quickly, not our best work, and Janell realy does have a mouth but Michael's big head gets in the way---so funny!
We wish we could be there with you guys in person. Celebrating that wonderful life that is Zoe and your many blessings with your whole crew!!
Many thought, prayers and joy your way!!!
the Hennesseys

**Michael holds the WORLD RECORD for most Ironman races completed in 12 months. He does it to raise awareness for Trisomy 13/18. Read more about his mission for TRIBE at the link on the right.

Birthday Wishes From Sarah Palin!

Received in the mail today...

a Zoe lesson

Zoe was born with an irreversible defect. The defect retards your growth, hampers and sometimes prevents your breathing. Affects your sight and hearing. Beckons infections. If you have Trisomy 18 you are helpless, weak. You're going to die.

Did you know that Trisomy 18 babies all look very similar? Dark hair, recessive chin. If it weren't for Zoe's eyes, you'd think - you'd wonder if she was related.

I didn't want to love her at first, didn't want to fall for the big blue eyes or the frail body calling for a father's arms. But, it's 364 days later, and I'm up and down most nights with my wife trying to figure out a way to console her and feed her and get her to sleep.

If anyone were to ask me why I'm doing what I do, I can't think of any other excuse for scraping myself around most mornings than I'm her dad. And this is what parents do. We give of ourselves...maybe even weaken ourselves to strengthen our kids. We nip at their heels, threaten, howl, try to get them to do what they need to do, what is right - knowing that a good 50% of the time, we're not heard, or we're resented, if obeyed. We pray, pray in tears for our children. We defend them fiercely. We love them beyond any logic.

We set up our hearts to get broke.

So if anyone were to ask God why He loves me, I know that's his answer.

Greg? Greg was born with a fatal flaw. He is weak, he is helpless. He doesn't do what he should and he rarely does what I ask him. He tests me. He questions me, doubts me, ignores me.

Greg doesn't act like me. He doesn't even look like me most of the time, except for every once in a while.

And if anyone were to ask God why He loves me like He does, He'd answer: This is who I AM. I'm a Dad. I love him.

And it's not Greg's love - wrapped in guilt, accompanied by mumbling, muttering and the occasional angry word.

I give of myself. I made myself humble so that He could live. I nip at his heels, threaten, howl, try to get him to do what he needs to do, what is right - knowing that a good 50% of the time, he's not listening, or he resents me, if obeying me at all. I am crazy about my children. I defend them fiercely. I love them beyond any logic.

And that's Zoe's lesson for you. NO matter how far away you feel, you're only one step, one breath away. NO matter how unprotected and unsheltered you feel, you are guarded in the hand of your Dad, who can't stop loving you. He can't help it.

He can't help it.

Friday, March 20, 2009

Ted's Birthday Wishes

Fiesta Dreamin'

Co-worker Jason and I put together a video that might snag us a 2011 Ford Fiesta for six months. We had fun. I hurt myself pretty good jumping. The video also features Kellen and Jen lurking in a bunch of scenes.

Make sure to rank the video! (click the stars below...) :)

Thursday, March 19, 2009

Tuesday, March 17, 2009

Good Eatin' - Out and Out

You know what's good eatin'? Out and Out. It's a pretty unassuming little stand on the corner of Lincoln and Washington in Cedarburg, but they've made a name for themselves by making awesome food.

Out and Out is going to be served up at Zoe's birthday party! So, come sample a crazy array of foods that Out and Out serves up for its catering, and smile and celebrate with us.

And, if you get a chance...drop by the stand sometime, order some custard, maybe a wrap. A panini. Tell them the Batiansila Blog sent you.

Out & Out Custard & Sandwiches
W61 N305 Washington Ave.
Cedarburg, WI 53012

Wish Zoe Happy Birthday on Video!!!

Hey Amy Hunt, and Barb in Melbourne...Hey Cathy, Ironman, Robbie...Anonymous in Michigan and you other lurkers...I hear you can't come this Sunday.

So I'm giving you a project. Make a little video wishing Zoe a Happy Birthday, YouTube it, and send me the link. I'll play them at the party and put them on the blog so we can all celebrate together!

If you have any questions on how to make a movie or how to YouTube, I'll do my best to walk you through. You have five days....

Sunday, March 15, 2009

Beautiful Sunday

and Zoe's breathing.

Actually last night, like she has been, she was wailing - but mostly because she insists, she demands that you talk to her and hold her and look at her. If you put her down, if you drift off...she wails.

I'd take her in, except during the day, she sleeps and is pretty sedate. She just wants you up with her.

Oh, and she doesn't want to go on a walk. Maybe 55 degrees is too cold, or maybe she's not partial to sunlight. We'll find out this spring. But she doesn't want to. Our opinionated little girl. Who would have thought Jen and I would have had an opinionated girl?

Saturday, March 14, 2009

What A Week

Silenced. I can't quite tell you the crappy thing that happened at work, except I think I can kind of tell you that it has to do with the economy.

I can't begin to explain the awful thing that happened to my dear friend, except to say she is a hero to all of us around her, especially to my daughters, young ladies who see her courage.

I can't look at all of Reagan Joy's website because the pictures. Too close, too close to the memories.

I'm silenced by the gravity of all the events from this week. I turn to God with nothing to say, nothing to offer. Empty hands.

needful hands

by jars of clay

"Needful Hands"

For those under the clouds
Staring up in awesome wonder
As tears come slowly down
I'm reaching up a needful hand

You are my eyes when I cannot see
You are my voice, see, sing through me
You are my strength in weakness be

To find that I could fall
And still your grace surrounds, pursuing
To freely stumble down
I feel your hands around my heart

You are my strength, my voice, my eyes
I lift up needful hands
You are my strength, my voice, my eyes
I lift up needful hands

Reagan Joy

"We also want you to know that you have made a difference. Lives have been changed and your little 3 lb. body impacted many people around the world in the 24 hours and 18 minutes that you were on this earth."

That's what Reagan Joy's parents wrote in their blog in a letter to Reagan.

Come celebrate Zoe's 1 year birthday. And our gratefulness for all the days we've been given.

Don't Be Surprised read articles like this one.

"She explained to London Bishop Ronald Fabbro in a chance meeting on January 20, 2009 that it was recommended that she terminate her pregnancy by a committee at the St. Joseph's hospital, despite the fact that neither her life nor health were in danger."

And no, I don't believe that the only time mothers are "pressured" is when their life is endangered. I just think doctors quit, and they induce to get the child's death over with.

Tuesday, March 10, 2009

Zoe's First Birthday coming up on March 22. She's snoring right now on my pillow which means a) I'll be finding somewhere else to sleep and b) she has every intention of going to her first birthday party.

Will you come? I've set up a Facebook event so you can accept there. Or if you're not a Facebooker, leave a comment here. Or if you don't comment, send me an email. Just let me know if you are planning to come so I can make sure we know how many people are coming.

March 22
North Shore Academy of the Arts - Grafton
1111 Broad Street
Grafton WI 53024

Sunday, March 08, 2009

American Idol Cheat Sheet

If you're like me, you've watched maybe a total of 2.5 total episodes of American Idol ever. And at least one episode was just thanking them for choosing Robbie Seay to play on their commercial.

This year, you've got a guy a) from Milwaukee and b) leads his church's praise team.

So, if someone asks you who you're cheering for in this competition, just say Danny Gokey. There.

Jumping Rope For Zoe

Zoe's big brother, Ethan is involved in a Jump Rope For The Heart Association fundraiser. For Ethan, it's more than just a fun way to stay active. If God wills, Zoe will have another heart surgery in the future...and her first has given us more wonderful days together.

So, if you have any extra change lying around, support Zoe's Big Brother today or tomorrow with a one time donation.

Saturday, March 07, 2009

Zoe Update

Annabel's mom, a blog reader and commenter, noted that the multiple urinary tract infections might be the cause of some kind of reflux from Zoe's kidneys. That test will come soon. We're really hoping that it's just that we were giving the wrong antibitotics and now we are.

Not sure why...and it could be anything from RSV shots to a long stretch of not sleeping well to something dark and sinister...Zoe's sleeping a lot. Too much. Sleeping much of the day, much of the night - even getting up only a couple times at night. Very unlike her.

Thursday, March 05, 2009

Trisomy Awareness Month Alaska. Governor Sarah Palin has declared March Trisomy awareness month, making her 1000% more likely to be liked by the Batiansila blog, which already liked her.

Tuesday, March 03, 2009

March 22

March 22 we're putting out an APB for all of you all to join us for Zoe's birthday. And if Barb in Melbourne can't make it, I'll do my best to blog it for you.

All we're asking is an RSVP. We're setting up a Facebook event...

Another Infection

Results of Zoe's cultures is she has another Urinary Tract Infection. More testing will be needed to find out if this is chronic, if the kidney is involved somehow (Zoe has one - a horseshoe shaped one)....or what.

Right now, she's conked out. She got her first day of meds in yesterday, and our hope is that she'll return to an infection-free existence soon. She is soooo uncomfortable when she's got this.

Sunday, March 01, 2009

The Circus

The usher walked to the front row of the floor-level seats and turned to Jen. "I don't know where you got the seats," he said, "but they're the best seats here."

Jen, Ethan, Aidan and Elise sat down and drank in the Shrine Circus. The coolest things about these pictures are 1) The elated kids and 2) all the glowing lightsabers in the stands behind the performers.

(Note to investors: buy stock in glowing lightsaber companies)

Thank you, St. Mipps.

Pray For Maddie

I know my friend Bryce through two separate lives - I worked with him at one of my jobs and we lived in the same hall of the same dorm.

I just got done writing him after visiting his daughter's webpage. Maddie has met a great amount of physical trial caused by her CEP 290 gene.

I told him that it's really rare that I ask God "Why?" about Zoe. But I do ask Him that same question about others. About my Dad. About Bryce's daughter, Maddie.

This is a broken place. That's why little girls have chromosomal problems and fight for life. Pray for Maddie, pray that we're delivered from this place. Pray that there is a floor of the valley and that the place where we'll be delivered will come soon.


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