Hayleigh: The Longest Day

Saturday started as a glorious fall day overlooking the Penobscot River in Bangor, Maine.  As I entered Hayleigh's room I noticed Hayleigh was awake but laboring to breathe.  Over the next 30 minutes her coughing became painful to watch and she didn't want to be touched.  The most comfortable position was this 'balled up' position where even then she began coughing uncontrollably.  

Initially Dr. Wood thought this was a good sign as it indicated she was starting to move the stuff in her lungs out.  But as her stats continued to drop and she didn't rebound he became gravely concerned. 

We went into the conference room (the one with the view of the river above) where he talked about his concern and how with any other patient he would have intubated as soon as they arrived.  However, due to Hayleigh's lifelong pulmonary hypertension, intubating creates risks not present in other people.  

In this meeting he said "if you go to the cemeteries around here you will see many many people 100+ years ago who died specifically because of what Hayleigh has. Modern technology allows us to support people so that they can fight the pneumonia...we just haven't been able to use all that we could with Hayleigh."  This statement was our wake up call to just how serious things were getting.  

We made the decision to intubate as it was now more dangerous to not intubate (ie her stats were dropping to dangerous levels and nothing was working to bring them back up).  

We also decided at this time she had to be transferred to Boston.  We felt this team had done everything they could but in Boston they have ECMO (heart lung bypass) which saved Hayleigh's life 14 years ago.  Given her condition, we wanted that as an option if needed. The Bangor hospital did not have ECMO

To their credit, the team in Bangor got right on it and were in constant communication with Boston Children's Hospital. We were initially told that Hayleigh would have to fly in a fixed wing plane as no helicopter was large enough to accommodate all the equipment.  We were told it might not be until late that night as these things sometimes take a long time to set up.  Thank you to all who prayed for the transport as a large enough helicopter landed a couple of hours later ready to take her to Boston (one of many key 'things that went right' to give our girl a chance at life here on earth)

The Valley

As they were getting closer to intubating Hayleigh, Rachel and I said what could have been our final words to our precious daughter.  We said we loved her...we prayed over her....all the while she was coughing gut wrenching coughs.  We stood at the end of her bed giving her the "I love you" sign in sign language. 

She looked up one last time, gave us the "I love you" sign back with pained blue eyes, bowed her head and then the drugs took her from consciousness.

This day was the day before the due date for our 5th child.  Since they were using nitric oxide, Rachel had to stay outside the room due to the unknown effects of nitric oxide on unborn babies. Therefore, she could not see the monitors...and that was a good thing.  I was in the room and could see the stats.  They were horrible with Hayleigh's saturations at times below 10% and most of the time in the 20%s.  Anything below 50% for a prolonged period of time would eventually result in death.  

The doctors were doing all they could do. I could see them trying different things from using different types of ventilators to changing ventilator settings, hand bagging, using various drugs etc.  Nothing was working, and the concern on the 6 people working on her was evident.  

Doctor Wood had a meeting with us out in the hall where he said if the stats didn't turn around soon her cells would start dying and then her organs would start failing and she would die. He said he had done everything he knew how to do.  The man literally had tears in his eyes, and we did too.  

I prayed with Rachel the toughest prayer of my life pleading for our girl's life but knowing it was a life created by Him and for Him.  Her life always has been and always will be for His Glory.  

And so I prayed the prayer of relinquishment giving back to God that which was Gods just as Rachel had done 14 years ago when she had been told Hayleigh was going to die that night as a baby.  I could barely get the words out but I said "If you are going to take her then take her now, but if you are going to save her please save her now."

I went back in the room, quickly emailed friends and family asking for prayers, and stood at the end of her bed.  I started rubbing Hayleigh's feet and praying for her as the doctors hand bagged her oxygen. I prayed over her Isaiah 53 "...and by his stripes we are healed" 

I prayed over her Psalm 91 "...because you have made the LORD who is my refuge, even the Most High, your dwelling place, No evil shall befall you, Nor shall any plague come near your dwelling; For He shall give His angels charge over you, to keep you in all your ways. In their hands they shall bear you up..." 

I prayed over her Psalm 23 "...Yea though I walk through the valley of the shadow of death, I will fear no evil; For You are with me; Your rod and Your staff, they comfort me."  

As my eyes remained closed, what I saw happening was the same thing that happened in El Salvador during our mission trip when the community prayed for our team.  You can read about that in the first part of this blog post http://tsfga.blogspot.com/2013/02/normal-0-false-false-false-en-us-ja-x.html  (link opens in a separate window).    

It felt then that the community's prayers had a physical form arching around and over us like a cocoon / wigwam of protection.....as if God was saying "You are doing My Will and are under My Protection" 

That is what happened as I was praying over Hayleigh while holding her feet. I saw that same cocoon / wigwam arch over Hayleigh covering her in His protection.   And from that moment on I felt a peace inside me that Hayleigh was going to be ok and that I was going to be ok as well.  I didn't know if that meant she would be alive on earth or alive in heaven but the peace was one that was beyond understanding.  Precious.  

I finished my prayers saying "I pray all these prayers in the name of Jesus, Amen"  

I opened my eyes and the doctors took the hand bag off the ventilator tube.  A HUGE amount of liquid came shooting out of her lungs.  In a matter of seconds her oxygen stats went from 20% to 50%.  The team quickly got a suction tool and inserted it into the tube sucking out another huge amount of liquid. Less than 5 seconds later her oxygen readings showed 80%.  

Rachel couldn't see the stats so I gave her and Cousin Suzy a thumbs up, but they didn't understand.  I looked at her stats again and yelled out "She is at 89%...she is going to make it! "  And a look of relief overtook Rachel along with tears of joy.

I don't believe in coincidences.  There was a reason that event happened at that moment.  This same kind of event / miracle happened in a similar way to Hayleigh when she was about 4 weeks old. 

Her life is for His Glory; Jesus Christ is exactly who the Bible says He is.  

300ml of liquid suctioned out of Hayleigh's lungs in Bangor

Her numbers kept climbing to 100% very  quickly before backing off and hovering most of the afternoon between 60% and 80%... Which is fine for transport and doesn't damage cells unless it is at that level for a very long time.  Over the next hour the team suctioned another 300ml of liquid out of her lungs. 

I suddenly realized I hadn't eaten since 730am so I scarfed down 4 pieces of pizza from pizzas we got the night before while Rachel had some yogurt and juice. Either Suzy or me were always rubbing Hayleigh's feet and I prayed many times Isaiah "by his stripes you are healed."

The helicopter arrived around 5pm. They were such a professional group of men and women. One of the men was one of the "buff" guys Hayleigh mentioned last night so we told him the story & he laughed & laughed saying "Well, she was pretty drugged up!" It was the one moment of laughter in Bangor that day, and Rachel got a picture with him

The helicopter transport isn't like what you see in the movies where the team comes in and whooshes the patient off. They prepped her for 90 min while we waited and watched. In that time the couple from Bangor who dropped by to help last night dropped by again.  

Jeff and Jill Churchill simply love Jesus and act as His hands and feet in this broken world of ours.  I asked if they would drive one of the cars 2 hours south where friends, Chris & Mary Ellen, would be waiting to drive our car the rest of the way.  They said 'sure'.  I am SO bummed that I didn't think to get a picture of them but they are probably angels showing up out of no where and wouldn't have shown up in a picture anyway.  Suzy drove Rachel in the other car, stayed at her brother's house near Boston Children's Hospital that night and took a bus back home Sunday.  

Rachel kissing Hayleigh goodbye before the helicopter ride.  I love Dr. Wood's hand on her forehead

I flew with Hayleigh.  We took off about 635pm for the 1 hour 15 min flight to Boston children's hospital at an elevation of 1500 feet.   

I thought I was taking a picture of the sunset here but got an interesting picture of Hayleigh's reflection as well...

Stats throughout flight were 60% to low 70%.  We even flew over the Red Sox playoff game

Arrival at Boston Children's Hospital...

 Throughout the day messages came in from around the world. We know people are praying for Hayleigh and can literally feel those prayers.  It has been heartening to see notes from people I used to work with that I haven't heard from in years.  People want to do something as we have had friends drive to pick up our kids only to learn we already had things covered. We had friends driving 5 hours to Bangor to be with us when they learned we were heading to Boston so they turned around (already north of Portland, Maine) and headed to Boston.  I arrived with Hayleigh in Boston to be greeted by our Pastor and one of the church elders and 5 of the best guys I'll ever know were not far behind them.  Rachel has had much the same with friends driving her down Saturday and friends and family showing up consistently throughout the day Sunday.  We have amazing people in our lives and we feel so blessed.

 Someone asked me today if I was disappointed that Hayleigh ended up on ECMO.  I think when I hopped on that helicopter I knew the reason everything worked out perfectly to get her to Boston was because she needed to be on that machine.  So, while it would be great to have everything immediately healed....if that was going to happen it would have happened immediately in Bangor along with an unexplainable 'clear' X-Ray.  Sometimes God works that way, sometimes He works other ways.  But in all things our family will Praise Him.

All I know is Hayleigh is under His protection and I feel at peace.  God bless you all.  Please continue to pray for the following

PRAYERS:

1. Healing....that Hayleigh's lungs eliminate the pneumonia and are able to work properly when it is time to come off ECMO.

2.  Protection of her leg from potential complications from having the canulas inserted there.

3.  Protection of her brain, organs, and hearing (she lost her hearing as an infant due to drugs she received to save her life so PLEASE pray that what little hearing she still has is protected).

4.  Please pray for Rachel and the baby and strength for our family.

It sounds like Hayleigh's stay in the hospital will be at least 3 weeks long.  Baby Scott will almost certainly come during that time but Rachel would REALLY like to stay with Hayleigh as long as possible.  Once baby comes, baby cannot be in the ICU and thus Rachel will not be able to be there very much.

In a hugely ironic turn of events....my wife has gone from wanting baby OUT 2 weeks ago to wanting baby to STAY IN for another 3 weeks.  Sunday was her due date.  Rachel may be the first woman in recorded history desiring to remain pregnant 3 weeks beyond her due date.  Your prayers are most certainly appreciated.

 God Bless,

Andrew
EmailTheJourneyBlog@gmail.com

Read the rest of Hayleigh's story here: http://tsfga.blogspot.com/2013/10/hayleighs-story.html

Hayleigh's sisters with her Sunday afternoon.  The ECMO heart lung bypass machine is the machine to the right.

Jeff and Jill Churchill (got this picture 11 years later from them when they responded to the posts about AJ's brain tumor)