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.