Hayleigh's Story

Hayleigh's Story

 Hayleigh is a twin (the one on the right).  We learned at 16 weeks gestation she had a hole in her diaphragm.  Since she was still forming in Rachel's womb, there was nothing to stop her stomach and intestines from floating into her chest cavity pushing her heart to the side and inhibiting the development of her lungs.

After 3 years of unsuccessful pregnancy attempts, this news was a crushing blow to Rachel and me.  Our doctor said that babies with this condition often create early labor and thus her twin sister was at risk.

We will never forget the first suggestion out of his mouth -- 'selectively reduce' the pregnancy to save the other baby.  In short, end Hayleigh's life with a lethal injection to insure that we would at least have one healthy baby at the end of the pregnancy.  Our other choice was to risk it all with the understanding that most babies with this Hayleigh's condition die at birth or have severe defects their entire life.

We risked it all.
There was no other choice.
Life is a gift from God.

Their birthday was the wildest roller coaster, emotional day of my life.  V came out wailing and pink and healthy: the highest high!  Hayleigh came out silent, ashen, blue: the lowest low.  Somehow the doctors stabilized her.  2 days later they fixed the hole in her diaphragm.  12 days after that she crashed.
We know about ECMO because 14 1/2 years ago that was the 'last resort' for our Hayleigh.  After 2 weeks on ECMO the doctors said "We have to take her off and if she doesn't respond then there is nothing else we can do for her."

Clockwise: Aunt Lynne, ECMO machine (smaller nowadays!), Hayleigh about 2 weeks old just before going on ECMO, and first picture of the twins together (we had to fight to get this picture as they didn't want V in the NICU)

She was 4 weeks old;  I had gone back to work with doctor promises that they wouldn't take her off ECMO until I got back from a business trip.   They took her off anyway while I was gone.  She didn't do well at all.   Alone with V, Rachel got the call from the doctor....

"You need to come down right now and say your goodbyes.  Hayleigh is going to die."

Rachel remembered the Bible verse that said wherever two or more are gathered in His name Jesus is there.  She took little V's hand and started praying.  As she walked down to the NICU my mother unexpectedly walked into the hospital, took V, and allowed Rachel to be with Hayleigh.

The doctors and nurses were still hand bagging her with alarms going off due to her horrific stats.  Rachel recalls the doctor shaking his head as if to say "it's over"  She bowed her head, prayed the prayer of relinquishment giving back to God that which is God's.  Rachel asked God to either breath life into Hayleigh and heal her or take her because she didn't want her to suffer.  

And He healed her.

Just as the doctors were about to stop their life saving measures, all of Hayleigh's stats started improving rapidly.  The bewildered doctor turned to Rachel and said "You may have just got your miracle."

Her life is for His Glory.  It always has been.  It always will be.

Pulmonary Hyptertension and Hearing Loss

The dire forecasts of birth defects for life turned out not to be true.  Yes, it was a struggle the first two years as we had to keep her in complete isolation.  Yes, she lives with pulmonary hypertension which in all practicality means she has to take it easy on aerobic activities and can't go to elevations above 1000 meters.  On Saturday they actually flew the helicopter at a lower altitude for this very reason.

One of the side effects of the drugs used to save her life back in 1999 was they sometimes damage hearing.  We learned about Hayleigh's bilateral, severe to profound hearing loss when she was 18 months old, and she has had hearing aids ever since.

As parents, we were so concerned back then about 'the world' not accepting her.  So we grew her hair long, bought very plain hearing aids, and hid her aids under her hair.  But she didn't like that.  At age 5 she showed Rachel designs on how she wanted to make her hearing aids sparkle and shine.  She basically wanted to make jewelry for her hearing aids....and she did!

As the years went by she got so many positive comments on her 'charms' that she said she wanted to start a business to sell her charms to other kids so that they could feel good about their hearing aids.  So, she did!

Her Business - www.HayleighsCherishedCharms.com

She opened her website when she was 10 years old.  I thought it would be good for her....kind of cute....build self esteem etc.  This girl has totally put her dad's small minded goals to shame.  It might be cute but there is a real business in there, and she is making more than I made cutting 10 lawns a week in high school.

I remember sweating in the hot Texas sun for an hour or two and making $20 per lawn.  Hayleigh goes to school in the morning, comes home, pulls up her orders, writes personalized notes to each customer and then sends her mailman (ie me) to the post office to send off her orders every day.

You might notice on the right side of the page that this blog was set up early this year as our family went on a trip of a lifetime serving Jesus Christ and touring parts of the world.  While we were on that trip, she did no marketing and yet the orders kept flowing in.  She and her sisters worked hard to make enough product to last those 8 months and pretty much sold out of most of it (thanks to Mae for being her fulfillment center).

But she doesn't just make jewelry for hearing aids.  All of her designs can be made into pierced earrings or clip ons as well.

Yes, I'm being proud papa now....Take a look   www.HayleighsCherishedCharms.com 

Customers ordering now are being told about what is happening and that their orders will be fulfilled once Hayleigh is back home.  No one has asked for their money back yet, and I have no doubt those orders will be fulfilled.

She won Oticon's Focus on People Award including a new pair of $10,000 hearing aids (thank you Hayleigh!!!), an all expenses paid trip across the country, and $1,000 to give to her charity of choice.

But my favorite page on her website is the customer photo page followed closely by the testimonial page.  She makes people feel GOOD about THEMSELVES!

I am immensely proud to be her father.  Her life is an inspiration to me and every part of my life from my faith to how I parent, how I treat others, how I look at others...has been impacted by her.  I thank God every day for her life and for the honor of being her father here on earth.  

The Past Week  (Medical update at end if you are familiar with this part)

I include what is below for those interested who came to know Hayleigh from my post on Saturday.  As Paul Harvey would say, here is 'the rest of the story....'

Last Friday morning, a Park Ranger from Maine (about 5-6 hours north of our home) called to inform us that Hayleigh was being airlifted out of the park due to difficulty breathing.  Here is the note we sent friends and family....

"We are asking for prayers for our 14 year old daughter Hayleigh who we just learned is having significant problems breathing.  She is on a school trip in the wilderness and starting feeling sick last night.  

Her condition deteriorated this morning to a point where she was given mouth to mouth breathing due to an inability to oxygenate adequately.  A helicopter is being sent for her right now which will take her to a hospital.  We asked if she was in cardiac arrest and the answer was 'no'  That is all we know at this time." 

Friday night we sent out this note outlining what had happened the rest of the day (I still chuckle at Rachel's "I'm not 40 weeks pregnant" comment):

"I dropped off the kids at school at 830am and got the call this morning from a Park Ranger in Maine.  I called him back once I got home so he could tell Rachel what he had told me (basically what I sent out in this morning's note).   

Rachel looked at me and said "I'm going"  And I looked at her and said "Um, Rachel you are 40 weeks pregnant and it is a 5 hour drive"  And she looked at me and said "I'm not 40 weeks pregnant.  I'm going!"  

And I said "Ok, you are 39 weeks and 5 days pregnant and its a 5 hour drive."  And she gave me the "I'm Momma and I'm going look" so I sent her on her way within 30 minutes and started making calls to doctors, packing stuff up, making arrangements for kids etc and then headed north myself about 3 hours later.  

Hayleigh started feeling sick last night.  Her teachers said it sounded like a normal cough but then turned to a wet cough late at night.  At midnight they made plans to carry her out (3 mile hike in the dark) but decided to wait until first light.  

She had a rough night and when her lips turned blue the park rangers called in the Army helicopter.  She flew to a small regional hospital in the middle of no where and then was transferred again by helicopter to a larger hospital in Maine.  We asked them to just fly her to Boston but the doctor who is now her primary physician was concerned about the time it would take (2+ hours) and what could go wrong....which was the correct call since she started going downhill early in the second helicopter ride. 

When she arrived around 1:30pm her oxygen % saturations were in the 70s (normal is 98%+) which prompted the doctor to refer to her condition as 'heading toward a cliff' and she had very poor coloring.  They inserted a tiny catheter into one of her major blood vessels which allows the doctors to draw blood, give meds, take measurements etc.  She had x-rays which confirmed the pneumonia as well as some heart tests / lung tests.

Rachel arrived around 2pm and I arrived around 5pm.  When I first saw Hayleigh she was still struggling to breathe and looked absolutely exhausted since she got very little sleep last night.  

However, I knew she was on the mend because here is what she said to me....

"It's a good thing it is me and not Vienna (twin sister) because she would have fainted with all the needles they have stuck in me." So, her sense of humor is still intact.

Then she said "The helicopter guys were really buff and 'hot'" so she is still a normal 14 year old girl.  

I showed her all the responses that have come in from all around the world....people praying for her and our family....and it made her smile and encouraged her greatly.  From friends and family to people we met in New Zealand, Australia, Guatemala, El Salvador, Israel, Tanzania, Kenya, Turkey, Greece, Germany, and the Czech Republic....thank you for your notes today. 

While I was not able to respond to all the text messages and phone calls, they were noticed and lifted my spirits as well throughout the day.   It is extremely comforting to see the body of Christ at work in situations like this.  Just a quick example was having 2 complete strangers walk in from a church here in Maine saying "we heard through the grapevine you may need some help here in a city where you probably don't know anyone, so we are here to help"  Thank you God for people like this!  

What an amazing blessing to be able to look at them, thank them and say "10 minutes ago a cousin we didn't even know had moved to this city walked in after hearing about Hayleigh.   So Rachel is at her house now resting....so thank you for your offer but we do indeed have family here to lean on."   God is good. 

The doctor just left saying "She is trending in the right direction, is on the right track and is doing much better than I thought she would be doing when she arrived this afternoon."  Thank you so much for your prayers.  

Please pray for

1.  Continued healing

2.  Rachel and the baby (preferably baby coming once we are back home!)

3.  Safe return home for all of us sooner than later.  

Everything seemed fine when I left the hospital Friday night around midnight.  I never imagined that 12 hours later I would send out a note to our friends and family titled "Hayleigh: Turn for the Worse Need Major Prayers" which read:

"Hayleigh has taken a significant turn for the worse and doctors are now concerned for her survival.  She had a fitful night but her 'stats' were stable until about an hour ago and then they just really started to deteriorate.  She has not rebounded and is struggling heavily right now.  

Please pray for her and send this to anyone you know who will pray for her.  

I sent the above message after our meeting in the conference room just before she was intubated.  An hour or so later I sent the following note just after the doctor told us that if things didn't turn around she was going to die and that he had done everything he could do....

"Hayleigh has been intubated and the doctors are having real troubles getting her stabilized.  Her condition is life and death  serious.   They have been unable to get her oxygen saturations to an acceptable level. Her oxygen levels are in the 20% to 40% range.  The doctor just told us if they stay there then her cells and organs will start to die.  He has done everything he is able to do here. 

She is in the valley of the shadow of death   

I will update as much as I can.  But the best thing you can do is pray. 

Pray for
1.  Healing / oxygen levels immediately get to acceptable levels

2.  A way to get Hayleigh safely to Boston Children's Hospital where there are more procedures that can be done if needed. 

3.  Rachel and the baby

4.  Strength for our family 

Pass this message along via email, Facebook or any other distribution method." 

I believe in the power of prayer.  I believe it with everything I am and everything I know and everything I have experienced.  When our girl was in the valley of the shadow of death, my number 1 priority was to let everyone I could think of know about it and ask for prayers.  I believe you all saved our girl's life with your prayers.  

After I sent the note above, then I went to the end of the bed, rubbed her feet, prayed over her, and felt God's protection envelope her as I outlined in the note on Sunday.  

TODAY'S MEDICAL UPDATE

It was a VERY good day for Miss Hayleigh.  She opened her eyes during a neurological exam.  The doctor moved far to the right of her while opening her eyes and said "Hayleigh look at me over here" and she moved her eyes over to him.

Later we were holding her hands and I said "Hayleigh squeeze my hand" and she did.  Rachel reported in the evening she opened her eyes on her own.  Rachel went to her to explain that she was in the hospital and was getting better / doing great.  Rachel said I love you Hayleigh and even with big tubes in her mouth Rachel could see her mouth the words "I love you Mommy"  

Friends stopped by today and hung signs and banners that the church youth group made.  There will be a huge banner on the other side of the room tomorrow which he school friends made and arrived at our home today.  Hayleigh will notice and really appreciate these signs when she wakes up.

She is trending in the right direction and your continued prayers are appreciated.

Prayer Requests

1.  Healing of lungs
2.  Protection of Hayleigh's hearing, her brain, and all other organs
3.  No ECMO complications (or any other complications for that matter)
4.  Rachel and baby.  Please pray specifically for clarity on which hospital to go to for delivery of the baby.  It's complicated but pray that the right people who are decision makers enter this story and resolve everything that is keeping Rachel from having the peace she should have at this point.  We had a good start on that today but need it finished in the next 24 hours as baby is most definitely coming soon!

God bless,

Andrew

Next Post:  http://tsfga.blogspot.com/2013/10/hayleigh-what-you-can-do.html

How to Get Notified of Updates on this site:

If you would like to know when new messages are posted here, follow these directions:

1. Click on https://www.changedetection.com/  (the page will open in a new window or tab)

2. Copy and paste the following into the first box:   www.tsfga.blogspot.com

3. Input email, click 'NEXT', and look for confirmation in your email box.