late update

The doctors have been watching Esther's tummy today wondering why it is swelling.  The latest is that they believe it is bleeding between the patch holding Esther's stomach contents in  and the skin.  The current plan is to open her incision and clean out the space tomorrow morning.  With this, the doctor told us there is a possibility that the bleeding will not stop related to all the blood thinning agents used with ECMO.  If that is the case they will have to take her off ECMO.  That would be great if she shows that she is ready.  If not, we would have no choice and that is when things get really scary.
Rhonda and I have definitely been struggling with fear and anxiety today.  Change is difficult to process.  I had to fight to focus on Esther today and not on the monitors.  I wish I could always say that I have given it to the Lord.  It is just so hard to completely let go and allow Him to reign and rule.  As I have said before, nothing I can physically do.  I am praying.  God is listening.  I do trust Him.  He is good.

Esther at 18 days

Restful night for Esther, mama and papa.  She pooped!  Sounds strange, but this is a very good sign that all the organs previously located in her chest are now beginning to work.  There is a "pocket" of air in her abdomen that is of some concern and will be monitored.  Other than that, plans are to change to an oscillator vent today.  This is a breathing machine that actually shakes Esther and is meant to encourage her lungs to open more.  There has been no change in her "lung volumes" today, but the doctors did mention seeing her left lung opening more.
Thank you Heavenly Father for another day with your precious child Esther.  Lord we pray your continued grace and healing in her.  We ask that your timing might include Esther's lungs functioning well  enough to come off ECMO before they need to change circuits and set her back again.  We, as well as Esther are in your hands Father, and we will trust in you completely.

Testimony of God's faithfulness - That we may be one

First of all, this is Rhonda writing this blog entry.  My sweet husband Jason has been writing for our blog.  He just forgets to sign his name at the bottom of the page.  Little did I know, that he had such a gift in writing and sharing for the both of us.  He asked me to write today, and I said "no way, I can't write like you write."  But the Lord kept telling me in those few minutes, that it was time to share something very personal with all of you.  I pray it would encourage you wherever your heart is whether it is in the dark parts of your life where you feel there is nothing left or in a time of simple joy.

I became a Christian my freshmen year of high school.  My best friend Bekah and I decided it was time to leave our old ways behind and move on to something more fullfilling in our life.  We learned what it was like to have a personal relationship with Jesus and we were falling more and more in love with him.  It seemed like the next 3 years at Lynden High School people were becoming Christians left and right.  It was one of the most beautiful times of my life.  I went on to play college Fast pitch at Western Washington University.  It was my mission to bring Christ to the field and share the Love that Christ has for each of us.  I stopped playing my sophmore year because of a shoulder injury.  I was so sad that I wouldn't be able to minister and be an example to those girls on the team anymore.  That summer I felt the Lord calling me to YWAM (youth with a mission).  I went to Hawaii, and God transformed my life.  I fell even more deeply in love with him.  It seemed to last for a few years.  Then I felt myself in a drought with the Lord.  I was only doing devotions because it was something that I was suppossed to do to be close with the Lord.  I was stagnant in every way.  


In February of 2007, Young Life (a teen based program to introduce kids to the Lord) asked me to help out with a winter camp.  I couldn't be more excited to go back to serving the Lord.  I met some amazing leaders at that time.  I became really close friends with a friend there.  I felt like my relationship with the Lord was coming alive again.  I could feel him everywhere.  My heart was longing again to learn more about Jesus.  I was also working as a Juvenile Detention Officer for Whatcom County at the time.  There was some difficult things I was going through there and I felt very alone.  I woke up early from a graveyard shift and opened up my bible and found a passage in John 17:20.  Jesus was praying for us.  He was saying "that all of us may be one, father, just as you are in me and I am in you."  I set down my bible that day and said "Lord, I want to know you like that."  The same way Jesus connected to the father.  I can't imagine how close and intimate it was.  So I said that prayer that day "Lord help me to know you like you know the Father."  

A month or two later, as my relationship with a friend was inspiring me to get to know God more, and my relationship was growing with God, I was in a horrible car accident with one of my friends.  We were t-boned by a suburban that ran a stoplight going about 45 mph.  My head hit the window.  We were okay and did not need to go to the hospital, but our bodies were hurting instantly after that accident.  I hit a deep and dark place instantly.  I became depressed, withdrawn, and had pain in my neck and back.  My friend that I had recently met, left out of my life for reasons I still don't know.  She was no longer there for me.  I felt like my world was falling away.  I was alone and had nothing left.  There wasn't a moment I could take my mind off of my physical pain, but the mental and spiritual pain was the worst. I couldn't sleep.  All I could do is read my bible.  I spent those sleepless hours getting to know people of the bible who also went through pain and suffering.  I wanted to know who they were and why they were going through it.  How they got out of it.  On May 22nd, a couple of months after the car accident, I was reading My Upmost for his Highest (a devotional book of stories and scripture) at Starbucks and this is what the daily reading was:

The Explanation For Our Difficulties

May

22

2012

. . . that they all may be one, as You, Father, are in Me, and I in You; that they also may be one in Us . . . —John 17:21

If you are going through a time of isolation, seemingly all alone, read John 17 . It will explain exactly why you are where you are— because Jesus has prayed that you “may be one” with the Father as He is. Are you helping God to answer that prayer, or do you have some other goal for your life? Since you became a disciple, you cannot be as independent as you used to be.

God reveals in John 17 that His purpose is not just to answer our prayers, but that through prayer we might come to discern His mind. Yet there is one prayer which God must answer, and that is the prayer of Jesus— “. . . that they may be one just as We are one . . .” (John 17:22). Are we as close to Jesus Christ as that?

God is not concerned about our plans; He doesn’t ask, “Do you want to go through this loss of a loved one, this difficulty, or this defeat?” No, He allows these things for His own purpose. The things we are going through are either making us sweeter, better, and nobler men and women, or they are making us more critical and fault-finding, and more insistent on our own way. The things that happen either make us evil, or they make us more saintly, depending entirely on our relationship with God and its level of intimacy. If we will pray, regarding our own lives, “Your will be done” (Matthew 26:42), then we will be encouraged and comforted by John 17, knowing that our Father is working according to His own wisdom, accomplishing what is best. When we understand God’s purpose, we will not become small-minded and cynical. Jesus prayed nothing less for us than absolute oneness with Himself, just as He was one with the Father. Some of us are far from this oneness; yet God will not leave us alone until we are one with Him— because Jesus prayed, “. . . that they allmay be one . . . .”

Tears streamed down my cheeks as I realized God was answering my prayers.  Remember, I had asked the Lord that I wanted to know him, and that we would be one, as you, father are in Me, and I in you; that they also be one.  I spent the next 9 months in depression, anxiety, mild panic attacks and sleepless nights.  

In those 9 months, our  young life director and my young life friends that were leaders, had been asking me for months to be a young life leader.  I said no.  1) I worked full time 2) I didn't know the bible that well 3) I had nothing to give 4) I am not crazy enough to be a young life leader 5) the list could go on and on.

I decided I would meet up and discuss this young life thing.  By the end of our conversation, I realized, "what do I have to loose?  I can't get any worse, I have already lost everything."  So I signed up to be a young life leader in Ferndale.  

God surprised me again.  Not only did I feel like I had nothing to give, but he gave me more than I could have dreamed of.  I had a new focus in life.  To minister to kids that need hope, love, friendship and fun.  I could do that.  God renewed my spirit and I began to sleep again.  I stopped focusing on myself and my problems, and starting helping others.  I was blessed with a whole new family of the most amazing christian leaders and friends.  I got welcomed into a new family that helped me over the next three years.

Here comes Jason into my life in 2009.  I spent that first year of dating, training for a marathon, working full time with Juveniles on probation, and still a Young Life leader.  That was hard.  Jason and I got married in September of 2010 and I stopped being a Young life leader to focus on Jason, our marriage, and starting our family.  

Since Jason and I had been married, we both prayed almost daily for the Lord to show us what our mission field was going to be together.  "Lord how do you want to use us.  We are open for anything?"  Little did we know that God would give us something so unexpected.  We found out when I was 21 weeks pregnant that she had CDH.  We were devastated.  She might not live through this.  "God, I did not sign up for this.  This isn't fair."  I know those thoughts only crossed our mind a few times, but we knew instantly that we were going to be thankful for each moment God gave us with her.  You have read our posts leading up to this, so I won't go into anymore explanation of how we processed this all.

We had no idea Esther's story would be shared with thousands.  We had no idea that people would be praying all over the World for our little girl.  We had no idea that this was going to become our mission field and that we would reach people and bring others closer to Christ because of her story and our walk of Gods sustaining grace and faith in our life.  So God once again has answered our prayer.  Not in a way that we were expecting, but in a greater way.  Our sovereign God allows these things to happen in our life for our benefit.  Any present conflict in our life, God will work it out for good.  This has been divinely allowed by him to work it out for his good.  In the deepest and darkest times of Jason and I's life, God allowed supernatural breakthroughs in relationships, and has opened up opportunities for us to share Christ with power and effectiveness.  We can rest in God's sovereign goodness.  We can't thank God enough for this trial.  For what he is doing in each of you through this.  I will leave you with this video Jason and I did at our church, Good News Fellowship in Ferndale, before Esther was born.  Thank you for allowing me to share a piece of my life that has forever changed us.

2 steps forward, 1 step back

Esther has been pretty active for the past 18 hours or so.  Fighting to see a little of the world around her.  Wandering eyes, dancing hands.  She had an excellent chunk of sleep yesterday, her chest rising and falling.  Then she woke up and was having nothing of the medications to sedate her.
So, overnight she didn't settle much.  This morning her lungs are a little more collapsed again.  The ECMO circuit has already gotten pretty clogged with fibrin and clots.  The doctors want to keep after getting her lungs open more and moving towards stopping ECMO.  For that, Esther needs to show more sustained improvement in her lungs.  On a good note, her swelling has come down tremendously and her abdomen is a little less tight.  However, she did have a little blood in her stomach tube last night.
So, a little good (we have another day to be with our beautiful daughter) and some not so good.  It is what we have been told to expect and have not had to deal with for a few days.
We continue to trust in the Lord that His plans for us are good.  We lift up all you prayer warriors out there to receive sustaining strength and peace from the Holy Spirit to continue the battle for God's glory.  To Him be all the glory forever, amen.

forget the morphine, let's play!

Breath sounds

Not too much to say today.  Another good and restful night for Esther!  She has regained all lung function she had prior to surgery and our nurse said she heard breath sounds bilaterally(air moving in both lungs!). Talk at the morning huddle was very relaxed and is centered toward opening her lungs more and getting off ECMO.  Again, no change on her cranial ultrasound, so no more bleeding to her brain!  Amazing!  These last two circuit changes have been without new bleeding and the doctors now talk as if it is a stable thing.  Stable; I really do love that word.
I think I will go worship the Lord in a run today.  Our hope is in the Lord.  He is our rock and salvation.  Glory, honor and praise to God for grace and hope in the midst of life.

encouraged

(started this hours ago, sorry lots of good distractions)
Thank you for your encouragement, God is awesome and provides for all our needs.  I spoke with my dad last night and he reminded me not to let up with prayer.  To in fact, double our efforts due to the evil one's desire to steal God's glory.
It is exhausting to occupy your time trying to solve something that you cannot solve.  It is the kind of thing people need to be medicated for because of the loss of sleep and physiological(sorry big word meaning physical) damage to heart, stomach and GI tract.  And none of it is necessary.  So easy to say, yet near impossible for my selfish heart to do.  It is funny how much I can feel the need to be worried.  It just seems like I should be pacing and loosing hair.  I think I have perfected staring through walls.  I can just look and be transported into other worlds, futures of both good and bad.  I am thankful to say that when I return to reality the present is exactly as it should be.  God has given Esther a less than "normal" entry into life, but her strength and peace is astounding.
Lots of people have told me that what we are writing is inspiring, and I would have to say the same of your responses.  We are continually encouraged and genuinely shocked at the amazing show of faith through prayer for our daughter.  Understand that what you are doing is making a difference, God hears you and is answering.
Since I started this post this noontime Esther has had another successful ECMO circuit change and is doing very well.  When they change these there are not only significant risks to Esther as far as a lag in support from the machine, but she also looses majority of the medications that have been circulating to keep her comfortable and control her pain.  Our nurse told us that immediately after they started the new circuit Esther opened her eyes wide open as if to say "what are you doing to me lady!"  I am happy to say that just a few minutes ago we got our own "eye" show, and she looked adorable.  Scanning the room and looking around with curiosity.
Lord God, we pray for your protection, comfort, peace and joy as we look to You and what you have planned for our moments to come.
Psalm 51:12-17

¹² Restore to me the joy of your salvation 
    and grant me a willing spirit, to sustain me.

¹³ Then I will teach transgressors your ways, 
    so that sinners will turn back to you. 
¹⁴ Deliver me from the guilt of bloodshed, O God,
    you who are God my Savior, 
    and my tongue will sing of your righteousness. 
¹⁵ Open my lips, Lord, 
    and my mouth will declare your praise.
¹⁶ You do not delight in sacrifice, or I would bring it;
    you do not take pleasure in burnt offerings.
¹⁷ My sacrifice, O God, is^[b] a broken spirit;
    a broken and contrite heart 
    you, God, will not despise.

continue to trust

No real change to speak of this morning for Esther.  Had another uneventful night.  This morning the conversation continues on how to open her lungs.  Although her lungs were functioning at their best yet, it was not yet enough to come off ECMO.  So she was given something called surfactant (look a wikipedia and you'll still be confused).  This is something that is naturally occurring in us all that works to prevent lung collapse, but she received an artificial version to hopefully help give her lungs the hint to open up.  This is known to initially decrease function, but it is still hard to see her go from her best back to 0 again.  Also the ECMO circuit is pretty gummed up with fibrin and clots.  They will be changing the circuit again this afternoon.  No matter how routine this may seem to be getting, it is still a very critical time.  Esther is very swollen, her tummy is shiny because of how tight the skin is.  She has a large incision across her entire midsection (it outlines the bottom of her rib cage).
Since surgery we haven't been able to talk to, pray out loud over her, or sing over her for fear of over stimulating her and stressing her system.  I have been kind of numb and melancholy with unrealized fear of the unknown.  We must remain strong in our prayer.  The enemy is looking for any opportunity to discourage us and steal God's glory.
I personally feel very weak this morning and would appreciate your prayer.  Rhonda, again is walking strong, supporting me and keeping us organized.  She also has stated that fear is creeping in and she has been trying to stay occupied to avoid it.  We know God hears our prayer, and we know he meets us in our darkest moments.  His Glory shines forth out of our darkness with awesome power that is unexplainable.  Just fearing what sort of darkness might be in store and seeking God to give us the strength to let go of our fear and anxiety giving it wholly to Him.
So, this morning that is where we are.  I plan on updating with the ECMO change and any other news later this afternoon/evening.  Hope your day is filled with His presence and that you can let go casting your cares upon Him.  Jesus is Lord!

steady as she goes

Good morning all.  Again, we simply cannot put into words how fortunate we are to have so much faithful prayer and support.  Esther had a completely uneventful night.  She is a touch puffy this morning which was expected.  Other than that she has regained the little lung function she had prior to surgery and this morning's chest Xray looks encouraging.  She has some lung on her left side that was not known when she had all of her abdominal contents in the way.  It remains to be seen just how functional it will be.  They plan to begin very gentle steps to help her lungs open gradually today.  Also they gave medication yesterday and overnight to prevent excessive bleeding.  That medication has caused a moderate amount of clotting to begin in the ECMO circuit, but they are hopeful to stop that medication by 1200 today to preserve the circuit.
So with that, we are still definitely walking the tightrope still in terms of risk for bleeding and clotting.  Overall, the surgeons and doctors are pleased with the way things are currently going.
As for Rhonda and I, got some good sleep and even slipped out of the hospital a block or two away last night for a quick bite to eat.  It is so great to have such amazing, intelligent, skilled and compassionate nurses, doctors and surgeons allowing us to feel trust and confidence in them.  I have heard too many stories of the opposite where parents were constantly questioning and doubting the doctors/nurses judgement and course of care.  It truly seems that every person here from janitorial staff on up, genuinely loves what they do and want to be here.  Nobody is simply "punching the clock" and collecting a pay check.  I think that speaks volumes of God's grace and provision.  Although we have been told Esther is the sickest child in the NICU, she is only one of so many kids fighting for their lives.  Cancer, bad hearts, kidneys, livers, you name it these kids are fighting it.  They are so much stronger than any adults I know.  These kids are so selfless, attempting to comfort their families and friends, reaching out to one another.  We have not had much of any direct contact with them, but have met some parents that have been here for  months that are sharing stories with us.
As we continue to request prayer for ourselves and Esther, please remember all the nameless children here fighting for a chance at living.  Please take some time listening to this song.  Jason and I worshiped to this song that last time Esther got her circuit changed and we were terrified.  It spoke volumes to us.  In the midst of God's peace he gave us yesterday, I got to listen to it while breast pumping and it lifted my spirit even more.  You can listen to it by clicking the play in the middle of the screen.

success

Esther after her surgery today

Esther has got the Holy Spirit in her!  She came through surgery without complication or excessive bleeding.  The surgeon met with us and explained what they found and what they did.  He said her hernia was about 8cm diameter and there was some diaphragm that they were able to stitch together and close, but they needed to use a patch to close the remainder of the hole.  In addition, she did not have enough room in her petite little tummy for everything to fit without it being too tight.  So they created a small pouch out of lab grown skin that is allowing for expansion.  Kinda hard to describe without a drawing (which the surgeon was kind enough to do for us).
Anyhow, she made it through one of many high hurdles in her path to recovery.  Next is more time on ECMO to allow her to rest and heal.  Followed by respiratory challenges to test her for coming off ECMO (all the time risking bleeds and clotting).  Then she should go onto a ventilator, with risks of pulmonary hypertension (high blood pressure to her blood vessels in her lungs) and various other complications.  If she passes all those tests, we then look to possibly working on nutrition and acclimating her gastrointestinal tract (mouth to bowel and bottom) to digestion.
She has been through a tremendous trial (imagine having all your internal organs rearranged) and looks wiped out, but still has a look of calm about her.  I know where our help comes from.  God has given Rhonda and I a peculiar calm the entire day as well.  We are full of praise for our awesome God!  He has given us another day to rejoice in His goodness and grace.
It really was peculiar today though.  We watched them take Esther into the operating room at 0830 and didn't see her again until 3:30.  The entire time just flew by when we would have anticipated agonizing through such a stretch of time.  Awesome.  That's all I can say about Him.  Thank you again for all your prayers, and please keep em coming.

On another note, many of you have asked how you can help us during this time.  Our journey here at Children's Hospital will be a very long one and could be up to 5 months if Esther keeps making it through all of these hoops.  I have fairly good insurance and it will cover a lot of our medical expenses.  We are living in our trailer for free so there is no cost of staying anywhere.  We have some food expenses and people have been so generous in bringing by dinner, snacks and gift cards.  We can't tell you enough how much it means to us.  One of the biggest financial burdens is that Jason may need to go back to work in about a month because we need to make money in order to keep paying our bills.   People at Jason's work will be able to donate their time to him so that it would allow him a longer time to stay with me and with Esther.  Jason and I have both agreed that whatever money we can raise through fundraisers (bracelets that Janell has created for team Esther) and a bank account set up, that we would use that money to help with bills at home.  This way Jason can continue to use FMLA and stay with us at Children's.  That being said, my sister Michelle Vandenberg, who used to work at People's Bank is setting up an account for Esther Holtrop.  Michelle will be the one to distribute money and checks to People's bank in Esther name.  You can send checks or money to her address:

Michelle Vandenberg
822 Van Dyk Rd
Lynden, Wa 98264

Please write checks to Esther Holtrop.  My sister asked to have the money sent to her house and not to the bank so she can keep track of it.

Also Sole Obsession in Lynden will be having a shop for Esther day and 20% of the proceeds will go to us.  I will get back to you on the official date this will be.  Lastly, We will be starting up a meal train this week.  If you are interested in delivering a dinner for two and live closer by or want to stop in, please send me your email and we will put you on the list.  Jason's friend Damian will be setting this up for us.  Directions will be included of when, what and where for the meal plan.

We can't thank you enough for all the replies for thousands of people we know and don't know.  We are honored to share our story with you.

almost there!

Latest report is that surgery has gone as planned and quote "very well". They are closing her up now, and the next page will be for us to go meet with the surgeon and get his report. They tell me it could take up to an hour to close, so if we are long in getting the next report that is why. Praise God from whom all blessings flow! No need to stop praying though, you all have been awesome and are glorifying God

surgical report

Received a call from our friend and church pastor, praying and encouraging us for the day.  Know that your prayers are being answered.  God has given us an a calm that is a little hard to comprehend.  In a time that I would expect to be sick with worry, I actually feel His joy.  Please continue to pray.
After hanging up with him, we got a page from surgery stating that they started around 0945 and things were going well thus far.  They plan on updating us again when they are nearing completion.  Here is another verse I was just reading that seems appropriate for everyday, not just today.

Psalm 51:7-11

New International Version (NIV)

 ⁷ Cleanse me with hyssop, and I will be clean;
   wash me, and I will be whiter than snow.
⁸ Let me hear joy and gladness;
   let the bones you have crushed rejoice.
⁹ Hide your face from my sins
   and blot out all my iniquity.
 ¹⁰ Create in me a pure heart, O God,
   and renew a steadfast spirit within me.
¹¹ Do not cast me from your presence
   or take your Holy Spirit from me.

hernia repair surgery

Esther is about an hour and a half away from her repair surgery.  God has graciously given us a good night sleep, and we are getting ready to go send her off.  

Lord, we place Esther in your mighty hands.  We ask for your provision and intercession during the surgery.  We trust and hope in you. 

Amen

hopeful anticipation

Esther looks great today, minus a few bruises from blown IV's.  She has the most serene and blissful look about her.  I almost cry just looking at her.  Thank you Lord for giving me these moments with your beautiful child.

It is official.  The operating room is booked for 0830 tomorrow morning.  Consent is signed and I just spoke with the anesthesiologist.  Esther's surgery will take place with her still on the ECMO circuit.  Just like everything else, she will be at a tremendous risk for bleeding, and this is by far not an everyday affair.  Surgery on ECMO is rare enough that, according to the surgeon, there really isn't any literature supporting or denying its effectiveness.
Specifics to pray for are:  no bleeding issues, enough diaphragm to allow for simple closure of the hernia rather than the need for a patch, enough space in her belly for all the stuff that is currently in her chest so there will not need to be an artificial hernia created to make room, and for the surgical team to be lifted up before the Lord for wisdom and skill beyond measure, and for the Holy Spirit to be covering the entire operation.

Surgery should last about 2 1/2 hours and we are told to expect things to be wrapped up around 11:30-12:00.  We will be waiting upon the Lord with expectant hearts.

Hallelujah

Hallelujah, smooth circuit change!  Keep the prayer coming cause our God is worthy of all praise.  Thank  you all for glorifying Him through prayer tonight and everyday.
Almost started chewing my own teeth, but finally heard the word and Esther looks nice and comfy.  God bless and goodnight.

leaning

Waiting for the word from our nurse that they have finished changing Esther's ECMO circuit.  It looked as thought this one might last until surgery, but the ECMO nurse was getting more concerned today when numbers weren't adding up.  When the machine/circuit gets built up with fibrin(the stuff of clots or framework) it will continue to operate but "chews up" blood cells in the process.  This is common and they routinely give a lot of blood products to account for this, but today these blood products weren't making it through the system and having the impact they need to.  Thus the need for change.  

These changes are very stressful on Esther as she is not supported during the exchange and last time did not tolerate it well.  Also, it has been the time when her brain bleeds have progressed.  

So we have been in prayer.  Listened to some worship music and met with the Lord.  Some tears were shed, not necessarily for fear or sadness, but mostly in awe.

We know this life is not our reward.  This life is as hard as it gets.  Knowing that can actually enforce feelings of inadequacy.  I have never felt persecution for my faith.  I haven't had to risk my life to talk about Jesus.  I have only had to live a life that most of us all live.  Trials that are not unique or hardship that is uncommon.  I have every reason to be thankful, and I am.  I have not had to endure any hardship or trial without the comfort and protection of Jesus Christ and His Holy Spirit within me.  I don't deserve this and have paid nothing in advance to receive.  We just keep leaning into Him and hope you do the same.

Deuteronomy 33:27 "The eternal God is thy refuge, and underneath are the everlasting arms"

Will update you all on how the circuit change went when we find out.

He is in control

Rhonda posted a quick update to facebook earlier about the brain ultrasound coming back with slight increase.  That said, the doctors from each team had roughly the same response.  That in terms of her overall bleed, it has grown a fair amount, but in terms of the day to day the growth today is very minimal and could almost be classified as "no change" or stable.
As this continues doctors, nurses, ECMO tech's and ourselves are nervous for the "big one".  As one of the doctors stated earlier this week "we could go 10-12 days without any significant bleed and then day13-18 have a large bleed and all our patience and waiting is for nothing".
So when Rhonda told me today we needed to meet with the doctors to discuss "what next", fear slipped in just a little.  In all honesty though, God has covered me with His peace today.  We weren't supposed to have today.  We weren't even supposed to have this last week!  Today Esther is the adorable, absorbing all my love daughter God has trusted Rhonda and I with.
Like I said last night, we never know when our time is.  Let alone our children's.  I am so thankful God has given me today, right now.  I cherish it.  In a way, we have it better.  I mean, if you new you were going to die, what would you change, do, plan, hope for?
I just wanted to boast about God's presence in our struggle.  Verses get thrown around with immense meaning and power that you can almost hear too often to be impacted, but He truly never leaves or forsakes you .
I pray that anyone who reads this, shares it, or discusses it will take a moment to "Be still and know that I am God".  In other words, simply stop and wait upon the Lord.  Seek His presence.

 The response from everyone really has uplifted Rhonda and I, as our purpose for the blog and sharing our Esther and our trial was to hopefully Glorify God and magnify His name.  You all (y'all for our southeastern brethren) have done that yourselves.  Keep the prayers coming.  There is no "right" way to pray.  God wants a personal relationship with us, so talk with him as you would your best friend.  He will listen in the same way.

All the medications that are being delivered to Esther to keep her alive

Pappa loves singing songs and praying with his little girl.

Some of the machines that are keep Esther alive

New Every Morning

Sorry about the lag in posts.  Just haven't had it in me.  God is gracious beyond our comprehension, but we are stubborn, proud and arrogant.  We hold on to doubt.  Question everything.  And I can simply wallow in sadness.
We are in a very difficult and challenging situation.  Nothing we "do" can have any effect toward the eventual outcome.  Helpless, in other words.
I see it everyday I go to work.  Proud, strong, intelligent, independent people whose health has stolen their freedom to effect change.  Their independence is stripped of them.
The range of emotions associated with this kind of event are anywhere from denial to ferocious anger.
Hard to put yourself in their shoes, but when you find yourself there it is a horrible reality.
The point I am getting at is, we all take our lives for granted.  We assume we will wake up tomorrow, go to a job, decide what to eat for dinner, figure out how to entertain ourselves before we go to bed.
I look at Esther and fear that at any moment this could turn and there is nothing I can do about it.  Nothing , that is except have faith and trust in the God of the universe that His ways are good.
This isn't something we can just do and its done.  If that were the case, we would become reliant upon ourselves.  I am finding in this that my expectations and desires can get in the way of "right now".  Right now, God wants me to be thankful.  Right now, God's grace is enough.  I know I am becoming a little repetitious with this blog, but it just goes to show how we fall back into the same traps and need to renew our commitment to follow God's will.
We have been fortunate to have my grandparents (mom's parents and dad's mom) come visit Esther.  What a great moment God has given us.
In general, Esther is stable.  She has had episodes of restlessness, fighting the medication.  Straining to open her eyes and wiggling her body.  It is adorable, but counterproductive as she can cause the machines to cut out and her blood pressure trends up.
ECMO is dicey and there are lots of ups and downs.  There is a small new bleed in her brain, but was stable without any new growth this morning.  The ECMO circuit has lasted and at this hour it seems may make it thru till tomorrow.
We are amazed at how Esther has impacted and touched lives.  The prayer generated on her behalf is astounding.  God is being glorified!  My precious Esther is impacting lives for the kingdom of God!
Well my brain is wiped and starting to wander, so please continue to pray.  He hears you.
So when I get down help me to remember:
Isaiah 33:2

O LORD, be gracious to us; we long for you. Be our strength every morning, our salvation in time of distress.

ONE WEEK OLD!!!!!!!

Here is a great song I was listening to while running this morning that I feel sums up our journey as well as everyone else.  I struggled with trusting tremendously with allowing God to work His plan yesterday.  Life just feels overwhelming at times.  It is during those times we need to stop relying upon ourselves and allow God to lead us.  Give Him your cares, anxiety, fear and sadness.

I firmly believe we need to grieve, be angry, cry, fear, and accept sorrow.  Each has it's place, and needs to ultimately be given to the Lord allowing Him to lead us to where His Glory dwells.

Impatience destroys and takes away from our Gods work.  The bible says to "be still and know that I Am God".  So hard sometimes.

They changed the circuit without issue last night (she looked so comfortable positioned on her side).  Uneventful night, just needed a little more pain medicine to calm her (the circuit holds a majority of the volume circulating in her system and when they change it they lose most of the medication with it).  Morning rounds was again positive and uplifting for us (STABLE), and looks to be more of the same today.  

There has been more oozing from her cannula site to her neck where the ECMO is attached and they plan on adding another stitch to it sometime today to help prevent that from continuing.

Please pray specifically for that to go well, no further bleeding or new bleeding, for Esther to rest and not continue to fight the machines (her strength is awesome, but she needs to rest), for each other (I mean all of you following us), and that God will protect us all from attack.

Thank you everyone for Glorifying God through your prayer, support, and spreading of Esther's trial.  God is good.

Latest news

Esther is as stable as she has been today.  Currently waiting for her brain ultrasound results.  Plans remain the same, but will advance if brain bleed remains stable (increase of blood thinners).  Also planning on changing the "circuit" for the ECMO again today.  As blood flows through the system it adheres to the tubing and mechanisms eventually creating clots necessitating a circuit change.
Still longing to glorify God in this time.  Knowing He meets our needs and we must trust in Him.  A few passages we browsed today lead me to this one:
Psalm 59:16

But I will sing of your strength, in the morning I will sing of your love; for you are my fortress, my refuge in times of trouble.

at a loss for words

Sorry I didn't get out an earlier update today.  I have been at a loss for words.
The town I grew up in, although no longer this way, was once small in terms of how tightly knit the community was.  With few elementary schools, 3 middle schools and two high schools, I knew or had heard of just about everyone in town my age or my older brothers' ages.
My brothers' friends, although not necessarily my "friends", looked after me like other older brothers.  Sometimes this meant I got the "treatment" from an extended family, but mostly this meant I was cared for and protected by what seemed like an entire town.
Like me, my brothers had friends they always hung out with.  Friends they could count on.  Friends they trusted.  Friends that would do anything for them and they would do anything for.
One of those friends died yesterday.  Joe Chorvat was to me, what my older brothers are and were.  A big brother and a "man's man".
I last saw him at another friend's wedding, and it was great to see the "old gang" of boys laughing and retelling stories.
I am at a loss for words because it doesn't make any sense.  Because I feel selfish and self absorbed.  The world continues outside of mine, and it is not so pretty.  I would ask that those that have been praying for Esther, Rhonda, and I would include the Chorvat family.  Ask for grace in the midst of sorrow and grief.  We cannot even comprehend what they are going through, and can only offer our love and prayer.

Pictures of Esther first 5 days of life

Esther fighting for her life.  A doctor told Jason " come over here and talk to her.  She will recognize your voice. " What a sweet moment between papa and Esther.

Day 1 almost complete.  Dad taking Esther temperature for the first time.

Momma changing Esther diaper for the first time.

Day 1 almost complete.  We spent the day praying and crying out to the Lord to save our little girl.  Her heart had stopped earlier in the day and she had doctors confused as to what was going on with her.  She also was hooked up to the ECMO machine earlier in the day.

Day 2 with Esther.  She was sensitive to light and very swollen with fluid from the ECMO machine.

Esther wet through everything.  It takes three nurses to move her to just change her bedding and diaper.  She doesn't know what is going on here.

Now Esther is mad.  She is in pain and wants to be put down.

Esther with her new bow the nurse made for her.  Of course holding tight to Papa's hand.

Pondering the origins of the world

We love the moments we get to see her with her eyes opening!!!!

STABLE

sta·ble

²    [stey-buhl]  Show IPA

adjective, sta·bler, sta·blest.

1.

not likely to fall or give way, as a structure, support,foundation, etc.; firm; steady.

2.

able or likely to continue or last; firmly established;enduring or permanent: a stable government.

3.

resistant to sudden change or deterioration: A stableeconomy is the aim of every government.

4.

steadfast; not wavering or changeable, as in character orpurpose; dependable.

5.

not subject to emotional instability or illness; sane;mentally sound.

STABLE.  A word I am very fond of lately.  It is almost like a song when spoken by doctors and nurses.

This morning; stable was the word from our "team" of medical staff.  Esther has been quite restless periodically.  During those times her movement does interfere with the ECMO, and they have had to increase sedating medications.  While it is amazing to see her beautiful eyes shining up at me, I can handle her peaceful face as she holds my finger and suckles the breathing tube.  

She was about a liter up on fluid yesterday.  One of the doctors commented that would be like one of us having an additional 20liters (10 2L bottles) of fluid in us.  They have been medicating her with Lasix to pull off the additional fluid and allow her body and the ECMO to operate more efficiently.

This is great!  For these past 3 1/2 days she has looked like a badly beaten UFC fighter.  Eyes swollen shut, fluid pooling around her head, stay puff marshmallow arms and legs and a tight shiny chest.  This morning her face is defined like at birth, no pain, no discomfort, just peaceful.  I know I'm her Papa and prejudice, but she is the absolute definition of beauty and grace.

Great report yesterday afternoon as well.  The head/brain ultrasound is stable and unchanged.

More of the same today; rest, recovery, healing and growth. Pray, Pray, Pray, Pray!

Prayer is comfort, reassurance, and affirmation.  God is not just near but in, about and surrounding us.  Thank you all for your continued prayerful support and encouragement.  God is Great!