Saturday, October 12, 2013

Isaiah Kenneth Stanley Scott

Rachel and I are proud to introduce our 5th child and 2nd son…

Isaiah Kenneth Stanley Scott. 

Born:  October 12, 2013
Time: 6:42am Eastern
Weight: 8 lb 3 oz
Length: 20 inches


This baby boy is a gift from God; we feel so blessed.  From the moment we found out about his life, he has brought us joy.  Rachel will tell you that even though we were traveling the world as he grew, this pregnancy (other than the morning sickness in Central America) was her most joyous. 

As a family we had many, many discussions about names.  But we chose Isaiah for the following reason….

Our first Sunday back home after our 8 month mission journey, our pastor preached on Isaiah 6.  It is one of my favorite scriptures as Isaiah realizes just how Holy God is early in Chapter 6 and then Isaiah 6:8 says

“Also I heard the voice of the Lord, saying, Whom shall I send, and who will go for us? Then said I, Here am I; send me.”

Rachel and I looked at each other and started talking about the name during the service.  We really felt called to do what we had done on our 8 month journey.  Essentially that is what we had said “Here we are; send us!”  Perhaps our baby was a blessing for being obedient to his Will…

Then last Saturday occurred.  The primary verse I prayed over Hayleigh was Isaiah 53:5

“But He was wounded for our transgressions,
He was bruised for our iniquities;
The chastisement for our peace was upon Him,
And by His stripes we are healed.”

But the clincher for his name came in a note from my sister Heather which she wrote to Hayleigh detailing how her family prayed for her last Saturday.  It is a beautiful note, which I will probably post on the blog later.  Here is part of what she wrote:

“Isaiah is where I went to pray for you.  And the prayers continued inserting the names of your mom, dad, and you, Hayleigh into God’s word…From Isaiah 43:
Fear not I (God) have redeemed Hayleigh.  I have called her by name and she is mine.
When she passes through the waters I will be with her, and when she passes through the rivers, they will not sweep over her. 
When Hayleigh walks through the fire, she will not be burned.  The flames will not set her ablaze. 
Hayleigh is precious and honored in my sight and I love her.
Do not be afraid for I am with Hayleigh. 
I taught little one how to pray someone’s name into scripture…then I did the same for your mommy and daddy. 
A couple of pages back I prayed Isaiah 40:28-31 over your entire family.  You probably already know this one. 
“Do you not know? Have you not heard?  The Lord is the everlasting God, the Creator of the ends of the earth.  He will not grow tired or weary, and his understanding no one can fathom.  He gives strength to the weary and increases the power of the weak.  Even youths grow tired and weary, and the young men stumble and fall; but those who hope in the Lord will renew their strength.  They will soar on wings like eagles; they will run and not grow weary, and they will walk and not be faint.”
These are words of great power, of truth, of love.  And so we name our son Isaiah and dedicate his life to God. We pray that God blesses him with a heart that loves Jesus Christ as much as we love him. 

Kenneth was Rachel’s maternal grandfather.  He came from humble beginnings yet raised 6 college educated children.  He worked hard, but he knew how to make life fun.  Many of Rachel’s favorite childhood memories revolved around her maternal grandfather, Kenneth Pope and we pray Isaiah has the same work ethic and zest for life.

The name Stanley honors three people: My paternal grandfather Stanley Lonzo Scott, the uncle I never knew Stanley Clippinger Scott, and my brother Stanley Kyster Scott. 

My grandfather was a 2 star general in World War II and a man of great honor and integrity.  He was a giant in my life.  I wrote about my uncle during ourtrip to Normandy where he died in World War II serving our country.  And my brother is simply one of the best men I know.  I pray Isaiah develops the character traits of these men and lives his life to serve. 

From our family to yours, thank you so much for your thoughts and prayers. 

Welcome to the world little Isaiah!  You are much loved.

Love,

Daddy and Mommy

========================

The story leading up to Isaiah’s birth….

Friday was one of those days where I can look back and see God orchestrating things to make everything work just right.   As I wrote last night:

“Things happened since last night that led to all the kids being at someone else's house at the same time tonight.  I had been going down in the morning and coming back in the late afternoon but today I went down to Boston late with plans to pick the kids up after dinner.  I had the thought "I wonder if everyone is at the same house tonight because baby is coming tonight?"  And the answer to that would be "YES!"

Earlier in the day we had made arrangements to deliver the baby at a hospital across the street from Childrens.  One of the OB practices said she could come for a check up at the end of the day given the unusual circumstances of our lives last week.  The person on duty was the leader of the high risk pregnancy unit.  He basically said “Rachel, you are having that baby tonight” and she said “Ok!” 
 
Signing disclosures / getting checked in.  The other person is Dr Hofler who ended up delivering Isaiah 

Starting the long wait...

By 7pm, I was with her and then we waited and waited and waited and waited as women kept arriving 8cm dilated or in emergency situations.  We were in a room once and they sent us back due to an emergency arrival.  It was a little frustrating but eventually became comical.  Ultimately, we didn’t get a room until after midnight. 

While we were waiting Rachel tied two bows, one blue used in the picture below and one pink that we ended up not needing.  
A gift from God for sure.  Isaiah with cheek on Isaiah Chapter 6.
The blue bow she tied without any trouble and in exactly the shape she wanted.  But the pink bow gave her all kinds of troubles.  She tied it and untied it at least 4 times and I finally said "Obviously this means we are having a boy, so just leave the pink bow untied and do it later if need be."  

Once we got in a room, the doctor broke Rachel’s water, and she started labor.  Early in the process we both noticed whenever Rachel had a contraction, Isaiah’s heart beat would slow dramatically.  The medical team told us not to worry about it, but proceeded to come in every time there was a change in his heartbeat.

Rachel gave birth to our Sarah with no pain medications at all.  But by 4:30am the pain was sufficient enough combined with concerns over the baby that she requested an epidural. Another benefit of the epidural was that everything would be in place if we had to do a C-Section.  Otherwise, they would have had to put Rachel to sleep to do an emergency C-Section.  She REALLY wanted to be awake for the birth of our baby.

The medical team asked me to leave the room during the procedure and when I came back I had a completely different woman in front of me.  Rachel was laughing, joyful, joking.  The medical team said “if the epidural procedure ever needed a spokesperson, YOU would be it!” 

Next, nurse Amanda (who was the BEST nurse we have ever had….and we’ve had a lot of them over the years!), did an exam of Rachel and said she felt like Isaiah had put his hand over his head.  The doctor confirmed this and said as well he was holding the umbilical cord over his head.  Rachel joked “I’m giving birth to Tarzan!” 

Nurse Amanda and Rachel
Then we realized the potential complications of delivering baby with the umbilical cord being ‘crimped’ on his head and we did a C-Section.  This was a good call because when Isaiah came out he had the umbilical cord wrapped around his neck. 

The team asked if I wanted to announce ‘girl’ or ‘boy’ when the time came and they actually remembered to give me that honor.  What a thrill for me to see our son and say “It’s a boy!”

I headed over to the table where they were working on him.  He gave a little cry when exiting the womb but didn’t do much over on his bed.  They put an oxygen mask on him and it dawned on me that 3 of our family members at that moment had oxygen assistance…Hayleigh, Rachel, and Isaiah.  I think this was payback because I held my breath quite a bit when I was born.  

Eventually, Isaiah let out a rip roaring cry (making Rachel happy as he had been silent before that) and turned a healthy pink color.  




The nurses were hilarious as they were building up Rachel’s self esteem.  When putting in the epidural “You have the NICEST back Rachel” followed by “You have the nicest healing scars from your previous C Section” 

Then the nurses started getting silly and saying things like “Your urine is such a beautiful yellow” and “You have the most beautiful placenta.”  LOL….but I think Rachel shocked them because she asked to see the placenta and they showed us the sack Isaiah had been in along with the placenta. 

Isaiah started smacking his lips for food no more than 5 minutes after birth and was a pro at breast feeding.  No lactation nurse needed there! 

We called my mom first and then the girls and AJ.  The girls were excited but AJ has been hoping for a sister.  His initial reaction was disappointment in not getting a sister and then he said we should name the baby “Abracadabra”  Cute. 

Finally, Rachel got to sleep for the first time since about 4am Friday morning when Hayleigh’s medical team started talking about taking her off ECMO.  As I write, the girls and AJ are in a car with friends heading to Boston to meet their new brother. 

What a wonderful, memorable day this has been.  Thank you all for your prayers and welcome to the world Baby Isaiah. 

God bless,

Andrew and Rachel

Other pictures:





The kids first meeting with Isaiah.   I can't wait for Hayleigh to see him.  I was able to tell her about his birth during a moment where she was awake. Her eyes widened and tears started rolling down her cheek.  She sooooooo wanted to be there for our little guy's birth but we are just thankful big sister will be there to watch her little brother grow up.  





We wanted Hayleigh there so we opened the computer to pull up a picture of her from our trip this year....




AJ said all through the pregnancy he wanted a sister, but thankfully he seemed to take a liking to his little brother.  At least he didn't nearly drop him like Vienna and Hayleigh did to Sarah when they first met her!


And the fun begins for Rachel....






Friday, October 11, 2013

Hayleigh and Baby - BIG NEWS!

BABY IS ON THE WAY!!!!!

And big sister Hayleigh is OFF the heart lung bypass machine (ECMO) and doing well!!!!

Notice the big empty space on the right side of the room where the ECMO machine used to be..


Oxygen stats are looking good and pulse in leg used for canulas looking good.

We are SUPER excited by all this.  Things happened since last night that led to all the kids being at someone else's house at the same time tonight.  I had been going down in the morning and coming back in the late afternoon but today I went down to Boston late with plans to pick the kids up after dinner.  I had the thought "I wonder if everyone is at the same house tonight because baby is coming tonight?"  And the answer to that would be "YES!"

Mid October baby in New England = this kind of view every year we celebrate this little one as well Hayleigh coming off the extraordinary life saving machine...


God is so good.  In all things Praise Him.

Please pray for

1.  Quick, safe, and healthy delivery of baby
2.  Comfort (as much as possible) and protection for Rachel
3.  Continued healing of Hayleigh

Spread the good news!  :)

God bless,
Andrew

Next Post...all about our new baby  http://tsfga.blogspot.com/2013/10/isaiah-kenneth-stanley-scott.html

Hayleigh - What You Can Do

What You Can Do To Help

So many people over the last few days have reached out asking how they can help.  Some have offered to make dinners, others have sent flowers, gifts, or cards to the hospital.  Thank you for your generosity and giving spirit.

Rachel and I spoke about this today as items are starting to fill her hospital room.   We both agreed Hayleigh would want you to do one of two things on her behalf in lieu of sending flowers, gifts etc...

IDEA #1  Giving to Sole to Soul

Hayleigh has a heart for the disadvantaged.  We served in the slums of Nairobi as part of our mission trip this year with an amazing organization called Missions of Hope.  If you ask Hayleigh what her favorite part of the trip was, she will list off all the places where we served....but she especially talks of Kenya.

Last year around this time the girls were in full fundraising mode on a project for Kenya.  Here is the video they put together with the help of some church friends: (link if embedded video doesn't work  http://www.youtube.com/watch?v=f8kRsrZot1A )



Hayleigh's 'big part' in the video starts at 1:17 and then again at the 2:30 mark (and what she said there is exactly what they ended up doing).  Be sure to watch all the way to the end because Hayleigh's little brother does something in the video that just made her laugh and laugh that infectious laugh of hers.

You can read about the final outcome of this campaign at the following link (please read!):

http://tsfga.blogspot.com/2013/05/kenya-shoes.html  (Link opens in a separate window)

You might be asking "Why give to something that has already been completed?"   The answer to that question is what happened the day after the girls gave all the shoes.  An arsonist again attacked the school and 100 of the kids who had just gotten brand new shoes lost their shoes in the fire.

I remember Hayleigh feeling so bad for those kids.  She became friends with a girl named Gloria and spoke with her over the course of their 2+ weeks together about living in the slums (see Gloria's picture in the blog post link above).  Gloria invited us to her shanty to meet her family and have tea.  I remember Hayleigh saying something like "Daddy you saw Gloria's home.  I bet those kids have never had anything new in their entire lives."

More than any other member of our family, this injustice really bothered her.  So, if she learns after leaving the hospital that her time of trial generated donations to buy those kids new shoes, she would be thrilled.  It would give real, tangible meaning to what she is going through right now.

I just tried the donation link the girls set up last year and it still works.  For those in the USA, it is a tax deductible donation to CMF International, and you get an immediate email receipt for tax purposes.  A $100 donation would buy 4 pairs of shoes and socks, but you can give any amount.  100% of donations to this shoe campaign go toward buying shoes.  (Update: I talked with CMF since posting this and they confirmed 100% of the donations will go to buying shoes for the kids)

Giving to this cause would bring Hayleigh much joy.

Click now on this link to donate:
https://give.cmfi.org/p-52-sole-to-soul-shoes-for-joska-students.aspx

Or go to www.cmfi.org/shoes and click on the 'Give' buttons for the campaign.


IDEA #2  Bone Marrow Registration

One of our dear friends needs a bone marrow transplant but has not found a match.  Hayleigh loves this person and this person's family SO much and would do just about anything to see this person back to health.

So, registering to be a bone marrow donor would be another way to bring joy to Hayleigh.  If you are between the age of 18 and 44, it is free to give as 90% of bone marrow matches come from that age group.  If you are older than 44, then this non-profit requires you to cover the cost of getting registered.

You can find out where registration drives are going on in your area of the country by clicking on this link and inputting your zip code:

http://www.bethematch.com/Support-the-Cause/Donate-bone-marrow/Join-the-marrow-registry/

Don't worry about needles....its just a swab of cheek cells to get registered.  You could save someone's life.  Be the hero....



There is seriously nothing that would make Hayleigh happier than you sitting with our friend making a video like what is above all because you registered to be a bone marrow donor.

If you are a part of an organization / church who would be willing to put on a registration drive click here:

http://www.bethematch.com/Support-the-Cause/Participate/Host-a-donor-drive/


UPDATE on Hayleigh's Medical Condition

On Thursday Hayleigh continued to make progress.  At one point during the early afternoon, the medical team clamped off the ECMO machine to see how Hayleigh would respond to breathing with only ventilator assistance.  She did well for about 4 hours but the team decided it would be better to wait a little longer.  So she is still on ECMO, but to me this was a huge step toward full recovery.

The nurse showed me the chest X-ray from this morning and there is obvious improvement compared to the one taken late Saturday night when she arrived at Boston Childrens.  All the cultures, however, have come back negative for viral infections and bacterial infections.  So, it is a bit of a mystery to the doctors as to what exactly happened.  Their best guess is that she aspirated on something as the kind of reaction she has had can be caused by aspirating something into the lungs that shouldn't be there.

It's actually a relief to me to hear that this didn't happen because she has pulmonary hypertension.  Her cardiologist said you can get pneumonia with her lung condition and get along just fine.  Her cardiologist flatly said "what has happened here is very unusual."  I'm thankful we don't have to walk on eggshells every time we hear a cough going forward!

I felt her awareness was much higher today.  When she would open her eyes, it wasn't the distant gaze of yesterday.  She seemed to be focusing in and listening better.  She DEFINITELY doesn't like the mouth piece in her mouth.  Rachel told me tonight she managed to use her tongue to work it out of her mouth.  Sarah will probably laugh when she reads that.  Sarah laughed and laughed when she read the part the other day about Hayleigh kicking the doctor.  ;)

The girls are processing all this as well as can be expected.  I'm thankful they have counselors at school who are able to get them to open up and let some things out.  I'm thankful as well they each have good friends they can lean on.  These things are theraputic as are our prayers each night.

AJ and Rachel needed some therapy too.  Here is it....



They haven't seen each other since about 815am last Friday morning.  Mommies and little boys need each other.

Not sure which one is more excited....

In case you are wondering, my therapy is writing this blog.

She is coming back to us slowly but surely.  Thank you so much for all your prayers and support.


Please pray for continued healing, protection of vital organs and hearing, protection for baby, rest for Rachel, and finalizing plans on where baby will be born.  

Links mentioned in this post:

Donate to Sole to Soul...shoes for Kenya kids:

https://give.cmfi.org/p-52-sole-to-soul-shoes-for-joska-students.aspx

or

www.cmfi.org/shoes

Bone Marrow Donor Link

http://www.bethematch.com/Support-the-Cause/Donate-bone-marrow/Join-the-marrow-registry/

God bless,

Andrew
Next Post:  http://tsfga.blogspot.com/2013/10/hayleigh-and-baby-big-news.html

Thursday, October 10, 2013

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.  

Wednesday, October 9, 2013

Hayleigh Medical Update

Thank you.  Thank you for caring enough about our Hayleigh to pray for her, to send our messages to others, and to encourage us during this time in our lives.  

The first blog post about Hayleigh went viral and I am hopeful that those who connect with Hayleigh's story know who she really is.  

So, this blog post will give an update on her medical condition and the next one (tomorrow) will introduce you to our Hayleigh girl and her incredible life to this point.  I really meant it in my last note when I wrote "Her life is for His Glory."  

How to Get Notified of Updates on Hayleigh

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.  

I have used this service for over 10 years to track interesting websites.  Whenever they are updated I get a simple email and it has worked well.  I have never received any spam due to using the service.  

Please take a moment and follow the instructions above.  Thank you.

Medical Update

The doctors speak of Hayleigh still being in 'the red zone' and being 'critical but stable.'  But Rachel and I see her progress over the past 2 days as a celebration of baby steps.  

Rachel is a champion mom.  Every time I go to the hospital, I see her by Hayleigh's side, near her right ear singing songs, reading stories, reading the Bible, praying with her.  

When she leaves her side, she turns on Hayleigh's ipod to her favorite music.  One Direction generally drives me crazy but when I hear it now I think about taking her to their movie a few weeks ago and how happy she was....and I smile.  Yes, I took her to the One Direction movie.  Yes, I watched it.  At this point, if Harry's voice or visions of Liam or Niall can help her healing then fine by me.  If she heard me say that, she would think 'miracles do indeed happen!'  

Monday they started bringing her out of sedation to do a neurological exam.  We were very hopeful to see her come back to consciousness if only for a little while.  But she did NOT wake up, but the doctors reassured Rachel that there was nothing unusual about that.  Overall, the exam was promising....and when we stepped away she apparently kicked one of the doctors.  ;)  

Tuesday she had a procedure done where they put a scope with a camera into her lungs.  They were hoping to see if there were any 'plugs' in the bronchial tubes but they didn't find anything.  The doctors said knowing this helps them make better treatment decisions.  We were able to watch this procedure; it was VERY interesting watching the video inside her lungs!  

One minor frustration is the number of team members.  There are SO many doctors, fellows, residents, nurses, and ECMO technicians.  I feel like we are constantly reminding everyone to remember Hayleigh lost almost all of her hearing the first time she was on ECMO due to the drugs she had to have.  We tell every team member the same thing (over and over)....if there is a drug that has side effects impacting hearing then use something else that can accomplish the same thing.  

Finally, Rachel called 10pm Tuesday night to report that Hayleigh had woken up.  She could tell there was something in her mouth (the ventilator  and she was trying to move it with her tongue).  She never fully opened her eyes but she started moving her hands and was blinking her eyes.  

Rachel immediately went to her side and spoke into her ear explaining what was in her mouth, that she was going to be ok but needed to be still and continue to rest as her body heals.  The medical team doesn't want her moving around much while she is on ECMO due to the large canulas needing to remain secure.  So, they put her back to sleep....but they also said what had just happened was a VERY positive sign. 

Our Hayleigh girl is still in there.  Rachel told me today that she had read my blog post from the other day but that she hadn't found that same peace I wrote about.  I prayed all afternoon for her to be at peace with this whole situation.  I think what happened tonight has given her that peace.  She sounded so good, so happy, so peaceful.  

The girls have attended school the past 2 days.  I drop them off in the morning and head down to Boston later in the morning to be with Rachel and Hayleigh.  I then head back home between 3pm and 5pm.  If I'm going to be late there are wonderful friends who take the kids home from school.  Others fix meals which the girls are SO thankful for because otherwise they would get spaghetti for the next month.  

AJ has been staying with Rachel's friend of 30+ years.  Roisin, you are a God send.  She and James have 2 boys and a little girl and a HUGE 'Thomas the Train' set which made me wonder if AJ would ever want to come home again.  

She told me last night the novelty of it all was wearing off for him and he had tears wanting to be with Mommy and Daddy.  I missed the little guy so much.  So, I picked him up today and the girls were so excited to see him....



Just as I was about to hit 'send' on this Rachel called all excited saying "She opened her eyes when I was at dinner....and then when I got back she opened her eyes again!  She is coming back to us already!!!"

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 (baby is still on board though Rachel is starting to have contractions!) + safe, healthy delivery in the right hospital at the right time.  

God bless,

Andrew


PS  I will introduce Hayleigh and the rest of her story tomorrow for those who don't know her.  Follow the instructions to get notifications of updates to the main page of the blog (copied below):

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.  










Monday, October 7, 2013

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.  W
e 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)