Rhonda and Jason

Rhonda and Jason
Our Wedding Day

Sunday, November 18, 2012

Its a......

Its a girl!!!
We can hardly express in words how excited we are to carry another miracle the Lord has brought into  our lives.  He has truly turned our sorrows into joy.  I was sitting by Esther's grave the other day talking to her about how excited I was, wondering how excited she was that she was going to be a big sister.  Our God is so faithful and redeeming.  We are 18 weeks along and busy cutting trees for our new wood stove, building to store the wood and trying to find any free materials out there that will help us build.  God continually providing as I wait for my job to start and Jason works hard with his patients at the hospital.  With the changes in our world, the elections that just ended, we are reminded over and over again that our God WINS in the end.  So thankful for that.  We have no reason to worry.  To daily go to him in our strength's and weaknesses knowing he will always carry us through.  Some of the best news came for Jason and I a few weeks ago with our ultrasound in Seattle.  We found out our baby is completely healthy and that we were having a little girl.  We are more than thrilled.  So excited that we are going to get to "raise" our girl.  Another perfect girl the Lord has given us.

Another song the Lord has given us in this time:

Friday, October 19, 2012

Our new excitement....

I will try and recap what has happened in the last 6 months since loosing Esther.  Please stick through till the end so you can find out about some exciting news.  You can see many of the following pictures and the thousands of times Jason and I have been blessed since the passing of Esther.  We are learning what its like to live and walk daily with a piece of our hearts missing that will never be completely filled except through Christ's touch.  There isn't a day that goes by or even a minute that we don't think about our beautiful girl.  Even if we are smiling from the inside out, there still remains the numbness and pain that we hold onto after loosing her.  We are carrying around a lump from our throat to our stomach and tears often begin to burn behind our eyes as we go through our day to day life.  Giving her back to the Lord after we so badly wanted to keep her was incredibly hard.  But we are learning to Trust in our everlasting father who knows us more than we can ever comprehend.  Who promises us more in return.

I have been reading some books on lose and pain.  One is called "Hearing Jesus Speak into Your Sorrow." This particular book has brought some great insights for me that I have been able to ponder and digest.  Some questions for some of us that may come up after loosing someone is this: "Is the gospel really true?"  Many who have lost someone they love or have witnessed in someone else's life, may ask themselves, "how can there be a God when bad things happen to good people?"  The following quotes from the book have helped me in the wrestling of this question.  In this book it states, 

"In John 6, where John records that many of Jesus' followers had turned away and deserted him because some of his teachings were so hard for them to swallow.  They were offended by what Jesus said, so they simply walked away from him.  He didn't meet their immediate expectations, and he seemed to ask of them more than they wanted to give.  They were far more interested in what they could get from Jesus than in getting more of Jesus.  And when Jesus made it clear that what he wanted to give them was more of himself, they simply weren't interested any longer.  At that point, as the throngs that had been following him began to slip away, Jesus turned to his twelve disciples and asked "are you also going to leave?"  

After reading this passage in the bible, I can understand why some walked away.  Relating this to my own life, I can also see why some people may question God, and just walk away because he did not meet our expectations.  As we struggle to reconcile our understandings of the bible and what cards we have been dealt with in our life we question whether or not the gospel could be true. We may feel like God is supposed to care of those he loves, but come to the reality that maybe we don't feel well cared for.  Jason and I could have left God, in the same way many did in this passage did.  But what outweighed it more was Jesus saying to us - please continue to trust me with this heartbreaking sorrow.  I am not finished yet.

Later on in this passage Peter, one of Jesus disciples,  goes on to say to "Jesus, where else would we go?  Who else could we turn to?  You are the only one we can run to who has the power to give life just by speaking it into being."  Jason and I can relate to Peter in this.  We have no were else to go.  Everything else would be meaningless.  Nothing would bring complete contentment and we would continue running and not finding an answer of healing to our pain. 

Some of the hope that Jason and I get to cling onto is knowing that when our lives come to an end we get to see Esther again because of what the gospel says happens beyond the grave.  It helps in the agony part knowing that Jason and I will meet her in heaven because of the commitment and belief we have made with our Lord and Savior.  We also Trust the Lord in our pain and agony.  There has never been a time we felt the Lord has let us down.  Even in the midst of times it may feel he has abandoned us.  But he hasn't and what comes out of the pain is far more beautiful that we could have ever dreamed it to be.  

I have also recently been studying the book of James in a women's bible study at church.  I have been blessed by the study of James by Beth Moore.  In fact, I encourage you if you ever have a chance to do the bible study, go for it.  You wont be disappointed.  Last night, we dove into reading James 1:12-19.  I got to look at some key things that Lord has done in my life through its ups and downs which you can read in an earlier blog I posted while we were in the hospital fighting for Esther's life.  I believe its called my testimony.  In these verses James says, "Blessed is the man who perseveres under trail, because when he has stood the test, he will receive the crown of life that God has promised to those who love him."  You can continue to read the passages that I have listed.  Beth Moore study went on to compare this first chapter in James to John 16:20-24.  These verses talk about how God will turn our Grief into Joy.  Or a different ways of saying it- our Anguish into Joy.  This  pain we are going through can turn into a new passion and Joy to serve and love others.  It can give us a purpose and a passion if we choose not to turn our backs on what God is doing in our pain and anguish.  I can truly say today that this pain that we have dealt with Esther is a gift from God.  My heart is filled with the gifts the Lord has given in our hearts and we are able to endure the pain.  To stand so solid before the Lord is unexplainable.  I feel like every day he is holding onto our pain and anguish instead of us being tumbled and crushed by it.  He is carrying us to a closer and deeper understanding of him.  

Lastly, I want to leave you with this.  This is what Beth Moore ended her study this week in saying.  I wept when reading this, feeling these are the same words that are in my heart and soul.  

"I can look at my life in retrospect and see how several of those very things of pain morphed into gifts.  I am convinced that desperation became a gift to me because it saved me from a life of mediocrity.  Gray wasn't an option for someone as self-destructive as I was.  Looming disappointment in some key people in my life also turned into a gift.  I couldn't get anybody to mend or tend to my tattered soul the way I craved.  A lifetime of snuggling up to folks with scissor-hands scars you, but those scars become a road map that leads straight to Jesus.  There He becomes the uncontested love of your life and the unexpected fountainhead of cleaner affection for others.  Every gap in your life makes room for the Lover of your soul.  God uses time to unwrap present that appear as curses."    
AMEN!!!!!!!! This is what we are talking about!!!!!!!  If you only knew what the Lord has brought Jason and I from each individually and the freedom we have felt in Christ.  It feels worth it to experience what we have because he really is that great.  I will go through anything to be closer to him. Neither of us want to live a mediocre life with Christ.  We want to live it to the fullest and see all he has to offer.

Here are some photo's over the last 6 months.  We have had so many fun adventures.  Over the last 6 months, I quit my job of being a detention officer.  I was having a difficult time healing my heart there.  Whenever I needed to get down on my knees to cry and feel the pain- I was there in that dark hole of detention.  I didn't feel like I could find the freedom to do this as I was the supervisor trying to run the show.  I didn't leave because of the kids, but more continuing staff and management difficulties that I no longer wanted to deal with.  It was time to let go and let the Lord lead me into something new.  The day after I quit I had an interview with Catholic Community Services as a Community Support Specialist.  I got the job and now get to hang out with youth that are having a hard time.  These are families that are usually low income that are need of assistance through counseling, behavior modification and crisis intervention.  I simply get to hang out with these kids one on one whether it be exploring Bellingham, playing a board game, teaching healthy social interactions and bringing some relief to the youth and their family.  

The day I was done working at Juvenile Detention, I found out we were Pregnant.  It couldn't have been better timing.  We couldn't believe it.  Our next baby is Due April 21st, just two days after what Esther's due date was.  We feel completely blessed.  We have met more amazing doctors and RNP with this baby.  We also have been back down to Seattle UW medicine and met up with our old doctors to share new hope and excitement with them.  They are family to us.  They are willing to sit down and discuss our fears and hopes for this new baby.  They have prayed over us and continued to praise us for what we have been through.  What a gift it is to have them still be such a valued part in our lives.  So far our ultrasounds are great.  They do not see any concern so far.  We will go down to UW again on November 5th to have our 17 week ultrasound to find out the sex of the baby and verify whether or not this baby has any defects or not.  Please lift us up in prayer as you can imagine the nerves and fear we hold onto.

Jason is still working at St Joseph hospital as a RN on the Medical/Surgical floor.  He loves his job and the joy it brings him on a daily basis.  He works 12hr shifts which allows him to only have to work two days in a row.  This gives us lots of freedom to have time together and get away for mini vacations.  We are still madly in love and find each other more and more enduring as the days go on.  

This last week I got enough strength and courage to join the church worship team.  It has been since high school that I have helped singing worship in church.  After loosing Esther and not being able to have the strength to sing to her in the hospital, I felt like she had talked me into going up in front again.  Esther wants to hear her Momma sing while she is in Heaven.  Last week was my first week getting back up there. I felt her presence all over.  I couldn't help but smile the whole time as we worshiped the Lord together.  The words we sing for worship have become more real than they have ever been before.  Jason and I find ourselves crying every Sunday as we sing to the Lord and think about how truly great he is.

Jason and I have also done some races recently.  We wanted to raise CDH awareness and wear the shirts we created for our Esther Holtrop Foundation.  The foundation is raising support for Whatcom County families in crisis along with helping other CDH families.  So far we have raised almost $3000.  We still have many shirts to sell to help raise support.  We are asking for a $20 donation for these.  We will have it as a tax right off soon, we are still in the process of making the foundation a non-profit and getting this approved.  Thanks for the patience in this.  Jason competed in the Tough Mudder in Seattle with his brother and friends.  You can see a few pictures of this when scrolling down.  The following day my friends and I did the Bellingham half marathon while I was 12 weeks pregnant.  It was amazing.  My favorite part was when I had 1/4 of a mile to go my IPOD started playing "Bless the Lord" by Matt Redman.  I stopped running and just wept.  What a perfect ending to what we have been through.  We feel so blessed.  I will end this long winded blog with that song that has been our new song of HOPE since loosing Esther.  Thank you for allowing us to share our hearts with you.

Click on the play button to hear this song

Eating lots of food with great friends 

Our trip to Mexico for healing after Esther had passed

Motorcycle trip in Wenatchee.  Last time we will ever put motorcycles in the back of a van! What were we thinking!!!

Many trips to Whistler to Mt. Bike.  We found this tree that we want to put an ornament on for Esther next time we are there.

Making a raft of flowers for Esther at a waterfall we had hiked to with friends

I got to donate most of my breast milk for Esther to a CDH mom's baby. 

Road trip to Oregon to visit some of our friends and hit a popular Mt Bike spot called Black Rock Mountain.

Many camping trips with friends and family

Bellingham Half Marathon wearing our Esther foundation shirts and raising CDH awareness.  These are some of my friends that ran the race with me.

This is baby Kate and Jana.  This was Esther's roommate that battled CDH at Childrens Hospital for 5 1/2 months.  They just made it home last week!!!! We got to visit them a few times at the hospital and cheer them on and pray with them.
Got to visit one of my best friends Georgina in California after having her first baby Asher

Got to go fishing a few times.  Jason caught this fish and Pine and Cedar lakes.

Some friends and I got to go to Malibu Canada for a Young Life Women's weekend.  
Jason got to serve at Women's weekend by helping in the kitchen

Some of my favorite ladies at Women's weekend

Jason and his brother and a bunch of friends got to compete in the Tough Mudder.  It was a crazy course with over 22 obstacles and 12 miles of running through the mud, ice, electric shocks, crazy wall climbing and many other things.

Jason getting shocked by these wires.

We got to raise CDH awareness again as he sported Esther's shirt.

Monday, July 30, 2012

Holtrops ride as part of healing process and an ultimate goal

They rode the seventh annual Tour de Whatcom because they want to develop a charitable foundation, based on an athletic event in memory of their daughter and to help others in need.
And they rode, feeling certain that some day they will be riding as a family, teaching their children the joy of cycling.
"If God doesn't give us (biological) children, we'll adopt," Rhonda said a few days before the ride, flashing the determination in her voice that made her a three-sport athlete all four years at Lynden High School, when she was Rhonda Roosma.
Cycling is a new, and most welcome, sport in the lives of the couple. They love the outdoors, so their rides - 105 miles for Jason and 50 for Rhonda - were especially satisfying.
"It's pretty emotional but it's helping us to heal," Rhonda said by phone while waiting at a pit stop to finish the Tour de Whatcom because Jason's bike broke down and he had to grab a second bike. "Even the wait turned out well, since I got the chance to talk about Esther with a woman who had lost a child."
The Holtrops loved the gorgeous scenery on a cool day.
"What a beautiful course," Rhonda said. "This definitely is even better than we expected. We feel Esther was with us the whole time. There were a lot of smiles all around and what great people we met."
Rhonda, 32, is a Western Washington University graduate who has served for more than seven years as a Whatcom County juvenile detention officer.
"I have a degree in psychology, but I just felt more called to work directly with at-risk kids," she said in an interview a few days before the couple rode.
Jason, 39, a member of the Class of 1992 at Bellingham High, is a registered nurse at PeaceHealth St. Joseph Medical Center. He's been a lifelong outdoors lover.
"I had mountain biked recreationally with Pastor Bill at our church, Good News Fellowship, and he kept hinting and asking us to do the Tour de Whatcom," said Jason, who borrowed his pastor's bike in order to ride.
Rhonda, likewise, was grateful for the opportunity.
"For me, running and doing anything outdoors is when I feel closest to the Lord," she said. "Now, to do something like (my first) 50-mile cycling ride, it helps me to relate to Christ's pain on the cross and the pain our daughter, Esther, had to endure in her short life."
The couple explained that Esther was born with congenital diaphragmatic hernia - a disease that left her unable to develop lung, even after surgery on her 13th day of life. She was born with a hole in her diaphragm, meaning her stomach, intestines and other organs were pressed up too high into her chest cavity, interfering with her heart and preventing lung development.
"When we had our 21-week ultrasound, our first ultrasound, we first learned of the problem," said Rhonda. "She passed away May 2 of bleeding complications and not enough lung."
Except at the moment of birth, the couple never knew their child without tubes and other medical necessities.
They never heard Esther really cry - she simply never developed the lung capacity.
"Just a couple of peeps, that's all we ever heard," Rhonda said, causing a visitor to shed tears at the thought.
That's why the sound of children - especially their own - will always be welcome during an outdoor venture such as the Tour de Whatcom, which consisted of large loops of scenic country over rides of 105, 50 and 25 miles for hundreds of local cyclists. The rides started and ended at Fairhaven's Village Green.
"As soon as Esther passed, we felt passionate about wanting to help families going through crisis," Rhonda said.
"We feel that's the mission field the Lord has given us," Jason said.
The couple said they can envision an Esther Holtrop Foundation.
"Our No. 1 goal eventually will be to have our own race," said Jason, indicating they aren't yet sure whether it would be a bicycle, running and triathlon event, since the couple is now fond of a variety of outdoor exercise.
The couple said they'll always be sure of one thing about their daughter - "She was a fighter," they said.
"We didn't know if Esther would make it to the next room (following her birth)," said Rhonda. "She fought and fought and fought for 20 days. She fought just to see us. She never gave up. We knew her story needed to be told. Now we want to be an open book to help others."
The couple's love of competition and the outdoors, however, was not what led to their introduction.
"My mom (who recently retired from nursing) set us up," Rhonda said, explaining how she met Jason. He called a week after they were introduced and they were married a year and a day after their first date.
The couple said Esther's death did not shake their faith.
"I actually feel this experience strengthened and deepened our faith," said Rhonda.
"We feel a closeness and an intimacy with Jesus Christ that we had never known before," said Jason.

Read more here: http://www.bellinghamherald.com/2012/07/29/2621455/holtrops-ride-as-part-of-healing.html#storylink=cp

Rhonda and Jason Holtrop are cheered on by Bellingham High cheerleaders as they cross the finish line of the Tour de Whatcom cycling race on Saturday July 28, 2012 in Bellingham. The ride was in honor of their daughter Esther Frances, who died on her 20th day of life of a rare congenital disease. "It was a step for healing. We wanted to go through something hard, like she did," says Rhonda. ANDY BRONSON — THE BELLINGHAM HERALD

Here we are living on Esther memory, joy and Love in our hearts.  Jason and I want to let all of you know that we  are planning on helping other families in Whatcom County enduring crisis of their own along with other CDH families.  Join us in our next upcoming races by signing up for them.  Our next race we will be joining is the Bellingham Half Marathon.  We plan on doing the Bellingham Half, but you can do the 5k, half or full marathon.  At that race we will be handing out Esther running shirts for those wanting to purchase one.  All proceeds will be going to helping other families in Whatcom County.  We will be updating our future plans along with showing the design of our shirt for her in the next few weeks on this blog.  Just want to let you know so you can sign up and start training.  Let us know if you would like a shirt and we will have a table at the race to purchase one at.  Thanks so much for continuing to follow us in our journey.

Wednesday, June 20, 2012

grief (life goes on)

So I think I left off with letting go?  Grief is a strange thing.  I've experienced loss before and thought I knew what to expect.  Totally different when it's your child.  My past experiences don't even compare.  I loved my grandpa.  When he died, after years of debilitating strokes and struggle, I cried for a night and was comforted.  When my best friend's little sister, whom I was very close to, passed in an accident, I was lost.  It wasn't real until I was putting on a tie for the first time since childhood to be her pal bearer.  I broke.  I needed comfort, and God granted that.  I moved on.  When my oldest brother died, I found out what rock bottom feels like.  Life lost all meaning in a moment.  The night he died, fearing he may have been separated from the Lord, I prayed for God to "somehow, someday, show me a sign that Jimmy is alright and with you."  I knew He would answer.  I had seen my brother accept Christ and knew his heart, but I needed my heavenly Father to show me.  I assumed as I said my prayer , that day was far off.  I was wrong.  At that moment the entire room was filled with what I call "flaming tongues" for lack of a better term.  In the bible in the book of Acts there is a description used to depict what happened when a group received the Holy Spirit Acts 2:3 says:
And there appeared unto them separated tongues like as of fire, and it sat upon each of them.
The room was filled.  I rubbed my eyes.  Still there.  I closed the blinds on the window.  Still there.  I turned on the light.  Still there.  I fell to my knees and worshiped.  Reassurance for certain, but only the beginning of grief.  I knew losing my brother would not compare with prior experience.  I just didn't realize the sheer terror of waking up to the reality of it freshly moment by moment.  Day by day.  Month to month and year to year.  I didn't know something could hurt so badly that it grew and blotted out everything else.  I read through the bible twice in 3 months.  The Word of God lived before me.  It was the only thing that had meaning; truth that lives in all generations.  So remarkable to see something written thousands of years ago that can literally be seen today.  Every sentence holds immense meaning with boundless application.
The first few years marked all the "first" anniversaries.  Holidays, birthdays, trips and mile markers of life without Jimmy.  The tears slowed and eventually reached the point of rarity.
I thought I knew what to expect if we lost Esther.  Most writing on grief, loss and mourning talks of a time of "numbness".  I never had that with Jimmy.  My dad, brother and I planned on taking it head on.  No avoiding, no running.  That wasn't Jimmy's style and we weren't about to dishonor his life with that kind of behavior.
I now know numbness.  It sounds so harmless.  It sucks!  I love my daughter and don't know why I am not completely crushed and useless.  Its selfish of me, but I want to wallow a little.  It just doesn't seem to be God's way with Esther.  Instead I am reminded that even meeting her was a miracle.  Hearing those two small cries as she was born.  Holding her hand telling her "Esther your papa's here. I'm right here honey.  Its OK.  Your so strong and your papa's so proud of you."  20 days!  She died the day after she was born on the machine that was meant to keep her alive.  20 days!  I would love to wallow, but can't help but rejoice.
I know I said I was angry when the doctors gave us the horrible news, but I need to clarify.  I was not angry at God.  I was angry at the situation; if that makes any cense.  I was angry because I didn't want to have that responsibility of deciding my daughter's fate.
Now I did have a moment of anger in the following days after hearing about other babies that were doing well.  I wasn't mad that they were doing well, I just didn't want to hear someone else's good news.  It had no value to me.
It didn't last though.  I can't stand being mad.  It is just such a waste of time, and makes me feel sick.  There is, after all, too much to be thankful for.  Now just like at children's hospital, the first few weeks were most painful at night falling asleep and after waking up first thing in the morning.  Other than that, I felt alarmingly well.  Numbness.  Sure there were moments throughout the day, but they were rare.
I guess I expected to be so broken I couldn't function.  Unable to get up or complete simple tasks because of the unbearable sadness.  Rhonda, experiencing much the same situation, brought up how we had just spent several months preparing for this possibility.  We reasoned that for 20days we were on the most intense emotional ride of our lives in the NICU.  I know sometimes scripture quotes can be cliche, but it really is a "peace that defies understanding".
Now Rhonda likes to follow blogs and a group of moms that have lost their babies, and we apparently don't fit the norm.  A lot of people hurt so badly they are suicidal.  85% of marriages end when they lose a child.  I don't find those stories amusing or simple.  People's hurt is intense.
Without Christ, without Rhonda I don't know what my life would look like.
Starting back to work was also a shocker.  When I lost my brother I found a job that required the least amount of thinking possible.  No responsibility for the guy who can't keep it together for more than a few moments at a time.  Nursing does not possess any of those convenient traits.  That said, the job has not been easier.  It is just that being away from my wife, having the potential of a loss of control, has been hard.  Days have been darker.  While at work the first few weeks, I missed Esther more than ever.  Although there are places to slip away and have a moment I am fearful of what might happen if I allow the "dam" to break at work.  How I could continue through the day after losing it and just slip back into the flow with a snotty nose and red eyes.  How I would have to explain to patients, doctors, coworkers.
Thankfully that is easing.  Since Esther's funeral, memorial day and other "big days", the numbness is slowly fading.  I have had several blowouts and it is soul shaking.  I am glad just to know it is there and I'm not fearful of the reality.  I see God's beauty and grace all around me.  I assume this is only the beginning of our mourning and grief.  That's alright.  Esther is worth every tear, cry, sob, and groan.  All grief is individual and personal.  No one knows yours.  Just as you can know no one else's.  We may experience similar things but at different times and for different periods.
  For far to many CDH parents, this is the rest of the story.  Life does go on whether we are ready of not.  Trust in the Lord your God with all your heart, mind, body, soul and strength.  Everything else is just a waste of time.
to be continued.........

Tuesday, June 19, 2012

still fragile (every day is new)

Been quite awhile now since I have written.  I have both feared and looked forward to it.  There have been amazing moments of peace and grace, painful empty moments and days, and a lot of "blah" nothing is wrong/nothing is right days in between.
Losing Esther has been frighteningly peaceful.  I say that to express the concern I have for Rhonda and I both as we have had so many days since losing her that we haven't cried or experienced the terror I would have anticipated.
I'll give you a quick recap:  On April 12, 2012 at 3:32 PM PST, I fell in love.  A miracle occurred before me.  A precious life like none other entered into this chaotic fallen world.  Esther Frances Holtrop was born with a couple peeps of triumph from a body not strong enough to sustain itself.  Doctors quickly inserted tubes and lines, attached probes and monitors, and Esther opened her eyes with a questioning gaze.
The next 20 days were a frenzy of panic and anxiety covered in the unfailing Grace of God.  Referred to as a "very sick little girl", Esther was visited with innumerable miracles.  Every day was a test of technology, medical knowledge and skill, and most importantly faith in the One True and Living God, Jesus Christ.
So many cried out to God on our's and Esther's behalf.  God continually answered with our desired outcomes.  Young, old, believer, non-believer, friends and strangers all praying to the God of all creation.  Yet another miracle.
On Esther's 20th day of life she was given a challenge.  The medical staff was remarkably upbeat and optimistic.  They saw improvement and capacity in her lungs that they had not expected, and due to continued bleeding, needed to get Esther off the machine that kept her alive.
We spent the morning without considering the worst.  After all it was simply a trial to see if she could be maintained with other drugs and equipment that would not require blood thinners.
9:30 AM was the planned trial.  10:30 AM I was asked to come talk with the surgeons.  They sat me in a private room stating it was due to maintenance on the normal briefing area.  Rhonda was preparing to pump breast milk and was intercepted being led in to me.  We looked at one another knowing maintenance or not, something was not right.
Staff including nurses, surgeons and other doctors filed in with tissue in hand.  I held Rhonda's hand as they told us "The trial did not go well.  Esther's lungs are not able to support her off ECMO(bypass/life support).  The bleeding is too substantial and her needs for blood products too great.  Even if we were able to sustain her on ECMO 1-2days or more longer, she would not be able to develop enough lung tissue to survive.  We have done all we can."
We sat there in terrifying silence, waiting for them to say something else.  I finally asked what was next.  They responded by giving us our options of how Esther might pass.  We could take her to the operating room and have the ECMO catheters (tubes in her neck that ran to the bypass machine) removed.  But that she would likely pass before they finished closing the incisions.  Alternately they could keep her on ECMO and allow us time to hold her and say our goodbyes.
For the first time in this entire journey I was pissed off.  I wondered at how I wasn't sad or grief stricken, just mad.  Not mad at God, just mad at the choices.  "How do you want your daughter to die?" Did it really have to be my choice?  What kind of choice is that?  How can a father decide their child's death?  I didn't want to limit God.  I wanted them to try again.  I realized that removing the catheters only meant we would hold her lifeless body without tubes.  We chose ECMO.
We made the most difficult phone calls of our lives to family, and went to be by our daughters side.

              WARNING:  I am about to discuss Esther's death and condition leading up to it.
           majority of it is a description of our state and how we worshipped God in it, but there are descriptions of Esther and they might be too much for some.

By the time we left the private room and headed for the NICU I was no longer angry, just distraught.  I could hardly believe I was going to say goodbye to my precious baby girl.  There is no way to prepare for that.  When we got to her room, they had already moved her room mate to another room.  Sobbing, I held Esther's hand and let her know her Mama and Papa were there, and Jesus too.  I could see there was dried blood on the tape that held her breathing tube and on the corner of her mouth.  Although peaceful, Esther looked uncomfortable.  I told her how proud I was of her, her strength, beauty and how much we loved her.  Then I sang to her.
My dad and brother were on their way, as well as Rhonda's parents and sisters with their children.  We were asked about clothes for Esther.  We had brought a dress for her when she was born, but had since grown comfortable enough to send it home with Rhonda's mom.  After a trip to the car for clothes, blankets and hats, family began to arrive.  We played a CD that Rhonda had made for all our friends and family that had been supporting us to remind them to pray.  We took turns at Esther's side, sang, cried, prayed poured our hearts into her.
After everyone had had time with her, the family went to the waiting room and they brought a couch into the room for Rhonda and I.  A photographer from the charity Soulumination came and we waited on the couch as they removed Esther's breathing tube and other non essential lines.  We had seen glints of red in her hair since birth, but her hair had always had gel from cranial ultra sounds or something else that darkened it.  As they carried her to us I broke again as I saw just how beautiful she was.  Her hair was a gorgeous strawberry, her mouth and cheeks swollen but adorable.  Our daughter, perfect in appearance, but without the ability to survive in this world.
How could it be that the first time I would hold my daughter was also the last time?
We held Esther for a couple of agonizingly joyful hours.  We thanked the Lord for every moment, sang songs of praise and worship over her, and smiled, laughed, moaned and rejoiced.
Although Esther was receiving medication to mask the pain, it became apparent that it was time to let her pass.  To give her up to Christ.
They turned off the ECMO machine and cut the tubes connecting them in a loop.  We watched as she breathed her last breaths and passed on to Glory.  We prayed and told Jesus "she is yours, we give her back to you."
We bathed her and swaddled her, leaving with an absolutely unexplainable peace.  I cannot say I have proof of our triune God, or the heavenly afterlife He has promised, but I KNOW He is real, and I KNOW Esther is with Him in heaven.  Now no one has questioned how I know this, and if they did all I could say is "I just know."  Trusting in the Lord does not require proof, or tangible evidence.  It requires faith;  trusting in something you cannot see, hear, touch or experience.  There is ample evidence of our God, and many choose to attempt to explain it away.  Some question, if there is a God how could he allow evil and death?  The answer is free will.  If God were to play the puppeteer and orchestrate our every moment, we would be forcefully brought before him.  It is our choice.  We are Christ's bride, not his battered wife made to bow before him and worship him out of compulsion.

It has now been about a month and a half since Esther went Home.  We celebrated her at our church after burying her next to my brother Jimmy.  What a blessing to be able to praise God in the midst of losing her.
Now looking back, I remember a meeting with friends before Esther's birth.  They have a son that had been diagnosed with CDH after birth and is now a very healthy young boy (12or 13 I think).  His dad told us he was excited for us.  Hard to hear when you are expecting a battle of the ages for your child's life, but taken as a blessing.  I took it as when we go through trial of this nature we are left with few choices.  We can choose to be strong, try to pretend its not so bad, cover our emotions with distractions, drugs, alcohol, entertainment, work.  Or we can lean into the Father.  The first produces more pain, hardship and simply prolongs the agony.  The last opens the door to a relationship with the Almighty that in indescribable.  When we have no power or choice in our lives, if we trust in Him, God draws so near you can almost smell Him.  To say you "feel" His presence is inadequate.  The experience is like floating.  To be carried in Christ's arms through your trials and burdens is like flying above them.  The difficulty seems almost foreign or separate and God's love consumes, engulfs and covers.
I would not elect to lose my child to grow closer to God.  I am selfish and want to have her until I die like many parents do.  I do however, rejoice is what God has done in the midst of losing Esther.  I don't for one moment, believe God "did this to me".  God set the world into motion, made creation perfect.  Than Adam ruined it all.  I know it won't happen in heaven, I just won't care, but right now I'd like to kick the crap outa that guy.  Sorry, got off track.  So God didn't deliberately say "I'm gonna teach Rhonda and Jason a lesson."  He did, however, make a blessing out of our tragedy.  He made an ugly, terror filled trial, beautiful.  Thats all I got today.  I'll keep up more routinely now.  Catch you up on what CDH is for our 50%.   Here is yet another song to illustrate our time with Esther and our lives in general.