3:32 Sunday, April 15th and another day of life!

Rhonda finally slept last night.  Working to let go of the anxiety and allow the medical team to do their work.  Falling asleep is one of the hardest times as Rhonda and I have our minds fill with the dreadful moments and even the beauty of our child when we close our eyes.  Fearful of losing her, anxious about missing a moment, longing for what might be.
As for Esther, no news is good news!  She is doing well on ECMO and the planned course is to check brain ultrasounds daily for possible growth of her brain bleed.  It has grown slightly each day, but ultrasound is imperfect and dependent upon the technique of each tech.  That said, the doctors have not made mention of any concern with how we are progressing and plan to keep Esther on ECMO for two weeks before talking about surgery.  This time will allow her lungs, heart and fragile little body to rest, heal and recover.
I know many have commented on how strong Rhonda and mine's faith is.  All I can say is He is the provider.  It is not our faith, but God's grace.
So we have no choice but to trust in the Lord.  And why shouldn't we, as he has answered when we called and never left our side, carrying us through the storm.
We are likely in the eye of the storm now.  The sun is shining, the wind, thunder and hail have ceased.  We pray the storm dissipates before the opposite side of the eye wall bears down on us.
Rhonda has a few devotional books that she likes to read and shared this message today:

Rest on the Word of God
    
      "I trust in thy word" (Ps. 119:42).
    
      Just in proportion in which we believe that God will do just what He has said, is our faith strong or weak. Faith has nothing to do with feelings, or with impressions, with improbabilities, or with outward appearances. If we desire to couple them with faith, then we are no longer resting on the Word of God because faith needs nothing of the kind. Faith rests on the naked Word of God. When we take Him at His Word, the heart is at peace.
    
      God delights to exercise faith, first for blessing in our own souls, then for blessing in the Church at large, and also for those without. But this exercise we shrink from instead of welcoming. When trials come, we should say: "My Heavenly Father puts this cup of trial into my hands, that I may have something sweet afterwards."
    
      Trials are the food of faith. Oh, let us leave ourselves in the hands of our Heavenly Father! It is the joy of His heart to do good to all His children.
    
      But trials and difficulties are not the only means by which faith is exercised and thereby increased. There is the reading of the Scriptures, that we may by them acquaint ourselves with God as He has revealed Himself in His Word.
    
      Are you able to say, from the acquaintance you have made with God, that He is a lovely Being? If not, let me affectionately entreat you to ask God to bring you to this, that you may admire His gentleness and kindness, that you may be able to say how good He is, and what a delight it is to the heart of God to do good to His children.
    
      Now the nearer we come to this in our inmost souls, the more ready we are to leave ourselves in His hands, satisfied with all His dealings with us. And when trial comes, we shall say:
    
      "I will wait and see what good God will do to me by it, assured He will do it." Thus we shall bear an honorable testimony before the world, and thus we shall strengthen the hands of others. --George Mueller.

Now isn't that appropriate?  

Please continue to pray, not only for us and Esther's health and well being, but for all those we don't even know in the world right this moment that don't have support, faith, facilities, and technology to gather from.  

Holy Father, I pray in Jesus name that you would send your Holy Spirit to the individuals and families in need throughout your creation today to comfort, strengthen, heal and protect them.

Amen

She is two days old!

We got a little sleep last night.  Esther has only improved since her last trial yesterday morning.  We have been able to shower and digest the last 24hours a bit.  The ECMO machine has several clots in it and they need to change the "circuit" (start new with new tubing) and that will not be without its challenges, but at rounds with the doctors the plans are all about moving forward and "next steps".  This is encouraging.  We had breakfast, they changed the circuit and my baby girl looks better than ever.  We continue to pray for wisdom, protection, healing and comfort.  Only God knows what is next, and I trust in Him.

Esther's birth and first 24hours (the rest of the story)

So I think we left off with our arrival at Seattle Children's Hospital.  Again, I was lulled into a false belief that things would somehow settle down a bit once we got there.  In a way they did as during transport Esther was on a different respirator and arrived with brilliant oxygen saturations and better than expected vital signs.  She was improving!
The change to the hospital respirator was up and down for a few hours but the surgeons and intensivists were hopeful and felt they had a solid plan.
Being a nurse really hurt me.  My knowledge of the instruments and values left me watching the monitors and loosing focus on my daughter.  I would break and recover overwhelmed by God's intervention and the miracle that Esther was still here.
Meanwhile Rhonda was left at UW hospital, but recovering remarkably.  They were planning on discharging her and she would be coming to be with us.
The doctors all treated me with great care,  explaining what they were doing and how they were planning to proceed.  I felt immediately that I could trust in them, and prayed for God's blessing upon their mind, body and spirit.  For Him to guide and protect them as He was with Esther.
A relative calm and stabile state was achieved for Esther and I was able to concentrate on Rhonda and her arrival.
She arrived around 11:00PM and we dropped off our things in the sleeper room that is provided to parents of children in the NICU.
We then were able to spend time with Esther, get updated by the doctors and surgical team.  The Surgeons have the largest say in her care and generally consult with the intensivists and other specialties for confirmation and sharing of ideas.  With the current respirator settings and cardiac medications, Esther's condition was looking hopeful.  We spoke of watching closely over the next 1-2 days with the idea of operating on her diaphragm in that time frame.
Rhonda and I went to bed with joy over God's gift to us.  Terrified what the future would bring, but amazed at the strength and resilience Esther had been given.
We were awakened by a call to the hospital pager we had been given, Esther's oxygenation was not maintaining well on the respirator.  We went down to the NICU and they wanted us to sign consent to give blood products.  The thought was that by increasing her volume and adding more plasma, Esther's body would be able to better regulate and maintain stable oxygenation.  We had nothing else to do but wait.
We had another chance to make an attempt at sleep (Rhonda had not slept since tuesday night and this was now early friday morning).
Again we woke to the pager.  This time around 7:00AM.  The doctors told us Esther was not responding to the blood tranfusion and the next step would be to start ECMO (a partial heart/lung bypass machine designed to relieve stress, allowing the organs to rest and recover).
Anyone familiar with CDH recognizes that ECMO is the "last ditch effort".  That is not to say it is a death warrant, but babies are already at high risk for blood clotting and bleeding.  ECMO requires the use of blood thinning medication to prevent clotting in the machine that could in turn be released into the body resulting in various tragic outcomes.  In addition, the blood thinning medication increases the risk of bleeding.
We spoke in depth about the decision with the doctor and signed consent without hesitation.  We would not be able to be on the unit during the procedure (large bore catheters or IV's placed in the neck) and so left to attempt sleep again.  Around 9:30AM we got up to check on the progress.  Doctors stated the start of ECMO went very well.  The night nurse was leaving and stated they were inserting a PICC line (peripherally inserted central catheter or IV that ends at entrance to the heart) and we would have to wait to see Esther until they were done.  She stated that she looked great and was doing good.
We decided to go for breakfast.
We sat down and prayed and received a page just before we started to eat.  I went to the phone and was  asked if we could come down to the NICU.  I went back to Rhonda and she told me "we need to get back now.  They just called my cell phone!"
Rhonda has been riding in a wheel chair and I ran pushing her down the hall to the elevator.  I thought we were going to say goodbye to our baby girl.
We entered the NICU and were met at the desk by the charge nurse who told us Esther was not responding well to ECMO.  Her face was somber, and she looked fearful.  As we entered the NICU she told us that Esther's heart had suddenly stopped and the ECMO "stalled out" or stopped because of the sudden drop in pressure.  There were somewhere around 30 doctors, therapists, specialists and surgeons at her side and filling the hallway all working together to solve the sudden issues.  Rhonda bent in the wheel chair and cried out to God to "save our little girl".  I joined her as we both cried and begging God to send His Holy Spirit and spare Esther's life.
A surgeon approached and explained that, although initially Esther had done very well on ECMO, she was not well and they were confused as to the source of this issue.  They had performed a chest Xray and found that there was air in the pericardial sack (the fluid filled sack surrounding the heart) and an initial brain ultrasound was showing a small brain bleed.  They had several theories regarding the source of each, but could not make a connection between the two.  Yet another study revealed very poor heart function as well.  With the brain bleed there was the potential that ECMO could not be continued, and that could very well spell the end of Esther's life.
The Lord intervened.  Esther was stabilized.
Plans were made to pull back the ECMO catheter hopefully solving the cardiac and ECMO flow problems.  If the unknown cause for the air in the pericardial sack did not persist, the air should reabsorb.  The brain bleed was compared to prior ultrasounds and some speculation was made that the bleed may have existed prior to ECMO but could not be confirmed and follow up ultrasound was scheduled for 11:30.
By mid afternoon it was found that the brain bleed was stable and Esther was doing well on ECMO.  She was very puffy but pink and beautiful.
I already miss seeing her powerful gaze, but have hope in God and His plan.
One thing I know, my God loves me to the point that he entered his own creation to die and rise again! To save me from my sin and take the consequence of it!  I know too, that he didn't just die for me.  He died for Esther, Rhonda, and every pair of eyes that reads this now.  I don't know his plan, but know he has prepared a place for me and all who confess their sin and accept him as Lord of all.
It is easy to deny God when things are going smoothly for us.  Life is distracting and blinds us to His presence.  When we are pressed to the point of inability to "fix it" ourselves, we can see him.  I can feel him in and around me covering me with His Spirit.  Without Him I could not go on in this.
I have spent many days of this life I was given serving myself as "god".  I have never found satisfaction in this pursuit.  My only contentment is in Christ Jesus.  He makes life matter.  He changes everything.

clarification

Thank you to all. Prayer does and is working. My daughter Esther is somewhat stable at this time. Just to clarify, because things change and are somewhat hard to clarify especially when Rhonda and I are in near panic mode, she has not yet had surgery, but has undergone several different procedures to insert what are called catheters or IV's. A couple were initially placed in her umbilical vein and artery at UW hospital and she has since received a central line (IV that is literally floated up the blood vessels to the entrance of her heart) and was placed on what they call ECMO yesterday morning which is a partial lung and heart bypass requiring insertion of two large catheters (IV's) into her large blood vessels in her neck. When she was born she did very poorly and at one point received chest compressions for about 1minute. She has been on a breathing machine or respirator continually until they began ECMO yesterday morning. Her initial oxygen saturations (the percentage of oxygen her blood was absorbing through her lungs) was very poor 50's-occasional 80% mostly hanging in the upper 50's and mid 70%. During transport from UW to Seattle Children's Hospital they used a different respirator that found her saturations in the high 90's to 100% upon arrival and for the first approx 1 hour at children's. That first night saw many near catastrophic changes that found us making the decision to place her on ECMO which has very significant risks and very high percentages of poor outcomes. About an hour after Esther was placed on ECMO (after a very successful insertion and initial start) her heart stopped. There were around 30 doctors, specialists and surgeons at her side and tragedy was once again narrowly averted. She has now had a completely uneventful night, is hours away from her second full day of life, and I am awe struck by the power of prayer and intercession of the Holy spirit in our beautiful daughters life thus far. Know with confidence the God hears and answers prayer. He has shown us such favor and grace in this it is hard to imagine not knowing Christ in our trial. May God richly bless you all for your dedicated and persistent petition on behalf of Esther Frances Holtrop. 

God's abundant grace

Gonna give this a whirl now.  The past 48 hours have definitely redefined my understanding of love, pain, fear, trust, faith; I could go on and on.  Like so many experiences in life that people tell you about beforehand, the birth of your child "changes everything".  Add to that some special circumstances and here I am in awe of God's grace for my life.
We have been waiting in anticipation for our daughter Esther's birth.  We have known all along the likelihood of significant complication and potential disaster.  Somehow God has given us peace and comfort throughout our journey.
April 11, 2012 we admitted Rhonda into university of Washington hospital around 4:30 in the afternoon.  We were both anxious and excited.  Several doctors and nurses greeted us with joyful anticipation of Esther's birth.  Except one.  I will call him Dr. Reality Check.  He had a very difficult reminder for us.  Our little girl had a very poor chance of surviving outside the womb.  Her defect is quite severe involving multiple organs including the liver.  Previous ultrasounds did not show enough lung tissue for her to breathe on her own and likely not with a ventilator either.
Somewhere along the way we had allowed ourselves to believe Esther's big struggle would be later on.  That stabilization and transfer to Seattle Children's Hospital were a given.
Rhonda's labor advanced very rapidly with induction treatments and all were caught off guard when she progressed from 4cm dilation to 8 1/2cm over the course of just an hour or so.
Before we new it Rhonda was pushing and two large teams of doctors, specialists and nurses were surrounding us.  I did not look at the clock but believe she pushed for about 20-30minutes before Esther arrived.
Two small cries came from her mouth and I praised the Lord for his grace.  The team of intensivists whisked her away as I followed in tears and full of fear for this next step.  The previous night Dr. Reality Check had prepared me for this moment.  He had made me aware of the seriousness and potential of what would or could happen in this room.
As we rushed through the doors I began to pray asking God for grace, for His favor upon his child.  A child he had chosen Rhonda and I to care for.
The next moments were terrifying.  She was not "doing well" according to the doctor and they needed to insert the breathing tube immediately.  The next seconds were crucial and they were having difficulty placing the tube.  Again the doctor reminded me "she is not doing well".  Assuming he was fishing for a response, all I could do was look him in the eyes questioningly.  My thoughts "what are you going to do about it?", but no words.  He understood.  Then a team member called she had secured the airway.  The doctor moved in and confirmed.  Esther's heart rate dropped.  The doctor called to start chest compressions.  The dam broke.  I couldn't contain myself.  My daughter was slipping away.  I continued to pray.  Her heart rate returned.  The doctor called me to the bedside and told me "hold her hand and talk to your daughter.  She will recognize your voice."
I moved to the table, put my index finger in her hand and told her "papa is here Esther, and Jesus is holding you in His arms."  She opened her eyes and looked up at me with strength and courage that I could only attribute to God's grace.
Things became a bit blurry, I was overwhelmed by God's presence, and my love for His daughter.  The team worked with quickness and surety preparing Esther for the trip she should not have been making to the NICU.
The next several hours were no less heart wrenching and filled with fear, but God's grace prevailed!  Esther made it to Seattle Children's hospital around 9:30.  The next part I will have to pick up later.  It is late, I want to look at Esther and say goodnight a second grace given night.
Thank you to all who have called upon the Lord God in Jesus name on ours and Esther's behalf.  He hears and has extending abundant grace beyond measure.  For that I cry Abba Father.

Our baby girl is fighting on ECMO. It is a heart and lung bypass machine that does the work for her heart and lungs outside of her body (best way to explain it). This is keeping her alive but giving her rest. Pray for no more bleeding on brain at this point plus lots of other things. Jason will update if we get a chance on our blog. I have not slept yet as my mind wont shut down. Prayers for this tonight. WE Love you all and feel God's presence everywhere!!!  We promise to write more when we have strength and energy and sleep.  Its been up and down saving here life many times.  You can't imagine what it feels like to be trying to get something to eat for breakfast after being up all night and getting paged to come now.  Running down childrens hallways to see over 30 doctors working on your girl.  WE screamed and cried out prayers.  He heard us and kept her alive.  These next 2 weeks will be touch and go of a roller coaster.  Don't stop praying.  
Rhonda

Esther is here and fighting so hard!

Hello All,

This message is coming to you from Rachel, Rhonda's twin sister.  I'm sorry I haven't been able to bring an update prior to just now...and Please Please forgive me if I leave anything out, I know Rhonda and Jason will fill things in later. 

Esther was born just before 4 pm yesterday (west coast time)  When I got the message from mom she said that the doctors and nurses rushed her right out of the room as soon as she was born and into intensive care. During which time Jason was floating back and forth between Rhonda and Esther. 

At just after 4 mom called saying that Esther was able to breathe 60% on her own, but that it wasn't good and we needed to keep praying because they wanted her to be able to breathe more on her own.  At the point where they told her she was breathing at 60% they also told her that Esther would not make it.....and the prayer chain continued....

At about 6pm I got the call that Esther was breathing in the high 70's/80%!!!!! God is soooo stinking amazing!  Jason had just come out of the room to let them know they are putting more iv's in through her belly button. The nurse will be in at 7pm west coast time to look at transporting esther and Jason to childrens hospital.
Prayers: for blood circulation to be better. B...ecause of her major organs not getting a chance to fully develop they are struggling more to pump blood.
Praise!!!! Well last night doctors said...esther won't make it out of delivery, there isn't any tissue where her lungs are....When she was born...she had 60% breathing...I praise God for what he has done...and has yet to do still!

At about 8pm Mom updated with the fact that they are still going to be transporting her to Childrens tonight. Rhonda is trying to go too. A few things are going on though...When they put the IV's in her belly button, it went through the blood vessels and into the bowels. This is no large concern right now, but it is more of a concern for infection.
When they put the breathing tube down her throat, they thought it went into the lung, but they are seeing air going into her stomach and then into the bowels. They ahve put an additional tube in to get excess air out. 
They also have held off on putting her on the heart lung bipass machine...they are leaving it up to the doctors at childrens hospital. According to most CDH babies in the past they don't make it off that machine.

Not sure how rhonda is doing at this point. Mom said she didn't want tot alk to anyone after hearing from the doctors.
Jason, Rhonda and Esther were transported to the Children's Hospital, during the ride, Esther was breathing at nearly 100% on her own!!!!!!!!! GOD is sooooo GOOD!!!!  How can we keep from praising HIM!

Around 5 am Rhonda said that they were giving Esther a blood fusion and that they were going to get her ready to have the ECMO.  Rhonda I believe wrote about this in a previous blog posting...or maybe it is in the side bar of the blog about what this is.

At about 6:50am Rhonda and I got to talk on the phone because Esther was in surgery at the time.  She told me that Esther weighed in at 6 pounds 6 ounces...seriously all I could think was Praise God!!!! Such a personal prayer request...because I was praying for her to gain some extra weight so she would be strong enough to handle the surgery...God is so so so good! 

AT about 7:50 am Esther just got out of surgery to have the ECMO put in. Her vitals are good right now. The longest she will be on ECMO will be 2 weeks. Once she is off the ECMO she will have the surgery for the CDH. So we are praying for the time frame of the ECMO to be shorter so that they can go ahead with the surgery... for the diaphragm. At this stage anything can happen in this two week time period. THat is why we are praying for the time period to be shorter.
Rhonda and Jason are hanging in there to the best of their ability. They haven't been able to sleep at all. They are going in to see Esther in about an hour.

ARound 9 am...things got really touchy...The message from rhonda...things are bad...please pray!!!!  Esther had about 30 specialists working on her. They found air around her heart and then there was bleeding on the brain.  The point where prayers were the only thing sought after because doctors could only say...we don't think she could make it...My question for them would be...how many times are you going to keep saying we don't think she is going to be making it out of this, before you just say...God has a special plan for this child, we are doing everything we can to save her...get your prayer warriors going...I wish i could be there to ask these doctors this...

While driving home from work so that I could pray, cry, worship, speak words of encouragement I got a message from Rhonda saying that they would be checking the bleeding in the brain and if it gets worse because of the ECMO they will decide whether to to keep trying to keep her alive.

BUT GOD....he's so amazing...because I'm sitting here at home worshipping...listening to the song Rhonda wrote about when Jesus was in the Garden of Gethsamane....and I was like wow...God you are amazing...But then I began singing the song..."Oh no, you never let go, through the calm and through the storm..."  And for real...That is God...he never lets us go.

So the bleeding is stabilized..Doctors looked at xrays from when she was born yesterday and they feel like they just simply missed it when the looked at it last night. So my sweet little niece is a fighter...a spirited young lady, who is saying no I will not stop fighting. And so we continue to pray...pray for Rhonda and Jason that their spirits are high, that they speak those words of power and encouragement over Esther when they are with her.  That they feel the HOLY SPIRITs power upon them, surrounding them....

This is the scripture I leave you with as one of the prayer warriors out there left on my Facebook page....

Psalm 5:3 "Oh Lord, you hear our cries; in the morning we lay our requests before you and wait in expectation."