Hayleigh Blessings

Blessings

“The struggle of today is not altogether for today – it is for a vast future also.”  Abraham Lincoln, annual message to Congress Dec 3, 1861

“Rejoice always, pray without ceasing, in everything give thanks; for this is the will of God in Christ Jesus for you.” 1 Thessalonians 5: 16-18

Yesterday someone said to me, "It's so unfair what is happening to your family!"  While I understand the sentiment, I don’t look at our circumstances that way.  Inside turbulent times flow many blessings that otherwise remain hidden to our ‘comfort seeking eyes.’ 

Our family has had a front row seat the past 12 days to witness the extraordinary goodness of humanity.  A partial list...

• Friends driving hours on ‘the longest day’ to be with us and show their support
• So many people supporting us while one of us lives at the hospital
• Young people in the community as well as at our church rallying to encourage and support Hayleigh
  
• Learning about our incredible neighbors a few doors down
• Witnessing our friends take our children into their homes and care for them when we were unable to.  These people are precious to us, but we never would have really known just how precious without this experience.
• Seeing God sending people to be with Hayleigh because she was all alone on the helicopter flight to Bangor.  Hayleigh told us that Friday night about these nice people she met when she arrived in Bangor (Jeff and Jill Churchill)… Hayleigh being all alone was one of the things weighing on Rachel’s heart as she drove 5 hours north, but God put people in place to comfort her.  She wasn’t alone.
• That same couple showing up the next day to do 4 hours worth of driving and thus helping us get our other car back to Boston.
• People who prayed for Hayleigh 14 years ago touching base with us saying “we prayed for her 14 years ago and we are praying for her again now”
• The daughter of the man who helped invent ECMO emailing us saying that he is praying for her. 
• Old work friends calling, texting, emailing, caring
• Parents from Hayleigh’s school bringing dinner every night since all this happened and church members signing up to do more of the same from the end of this week until Hayleigh comes home.
• Hearing people in our lives who don’t believe in God, talk about God in a different way and perhaps starting a journey back to Him.
• We have witnessed truly remarkable doctors and nurses giving such excellent, loving care.  They are inspiring. 
• Friends making videos and posting on Youtube (see below).
• One friend coming to be with Hayleigh until nearly 4am the morning Isaiah was born even though she had an important work assignment the next day. 
• A life changing experience for me feeling God’s protection, peace, and presence at the darkest moment of this journey. 
• That peace specifically touching one of the nurses who has cared for our family.
• Seeing God move in other people’s lives as a result of what is happening.
  
• Amazing people using their connections to help us find the right hospital and right doctors for Isaiah’s birth.
• The blessed details around little Isaiah and how his birth has already touched people’s lives for Christ. 
• Being constantly reminded of God’s grace and connecting the dots with so many beautiful details on our lives. 
• Bone Marrow campaigns being set up in response to our ‘what you can do’ message last week (more details later)
• People giving to Sole to Soul so that Hayleigh will feel better about her trial benefiting others once this is all over

I’m not a masochist, and I certainly never hoped our daughter would be in this place.  But this is the place we are.  So, the choice is to be miserable or to be thankful for the blessings that flow from such a time.  We give praise to Jesus Christ and pray that he uses this time to grow us and to reveal Himself to others. 

Hayleigh Update

When Hayleigh was a baby in the ICU she had a ‘2 steps forward, 1 step back’ kind of recovery that was pretty tough on us as new parents.  But her recovery this time can best be described as slow but steady with no setbacks.  We’ll take it!!! 

She came off ECMO Friday and has been trending better each and every day.  Some highlights:

• She is close to being off nitric oxide which was an experimental treatment in 1999 but is now standard in helping ‘open’ stressed or diseased lungs.  The fact that she is almost completely weaned off this gas indicates her lungs are close to doing what they are supposed to do. 

• Currently, her medical team is most interested in getting her off the nitric oxide but they have reduced her oxygen concentration to 50% from higher levels (room air is 21% oxygen) and reduced her ventilator support settings as well. 

• Her chest X-rays are looking MUCH better.  Monday doctors inserted a drainage tube in her chest as they determined that the fluid being seen in x-rays was actually fluid caught between the lung and the chest wall.  This was a good call as over 1 LITER of fluid drained out in less than 12 hours.  1 Liter!  No wonder it was hard to breathe. 

• Also on Monday, the team inserted an experimental feeding tube which has special sensors around the tube.  These sensors pick up diaphragm contractions and adjust ventilator settings automatically to optimize her breathing.  Incredible technology and we are so thankful she is a part of this study!

• When the team first took her off ECMO they kept her heavily sedated to see how her lungs would respond.  She did well.  Therefore, they have reduced sedation because there is great benefit to her coughing to clear her lungs (which nurses suction out).

• The surgeon spoke with me Tuesday morning about her right leg where the ECMO cannulas had been placed.  The night she went on ECMO, doctors explained to me the risk of reduced blood flow to the leg creating future complications.  The surgeon said he was very pleased with how the blood vessels have healed, indicated blood flow to the leg is excellent, and doesn’t expect there to be any problems going forward! 

So, overall, Hayleigh is trending positively toward health. When she is awake, she is very uncomfortable.  In those times, I feel most useful as she calms down when she hears my voice (and thus doesn’t pull out her IV lines).  She’s pretty feisty though which is good to see.

Meeting Isaiah

Today Hayleigh met Isaiah for the first time.  It was a beautiful moment.  She immediately knew who he was and her eyes widened and filled with tears.  We laid him next to her and as we started taking pictures I got choked up as I realized she was trying to smile around the ventilator tube in her mouth.

As I was picking up Isaiah, I held him up near her mouth….and she leaned forward and kissed him.  She’s in there.  She is in there indeed.

Prayer Requests

1. Continued healing for Hayleigh’s lungs
2. Successful weaning from ventilator by this weekend
3. Strength for Rachel as she is now home with the kids

God bless,

Andrew & Rachel

Other Pictures / Videos

This first video is short (50 seconds) but is especially funny because Melissa and Mike know how much Rachel dislikes ostriches (even though she actually rode one once!)  Thanks for the laugh!  

This next video made Rachel cry.  The work / effort in putting this all together is part of what makes this video special.  While we watched all 17 minutes and I'm sure Hayleigh will as well, here are my favorite parts if you don't have time to watch the whole thing:

:00 - 3:20  Love the song, love the message given to Hayleigh
5:58- 10:10  Messages to Hayleigh  (esp the 8:35 one LOL)
10:45 - 11:45 The prayer.  The pictures include customers from her business as well as friends.  
16:00 to 17:13 Pictures of Hayleigh and family



But I think what I love most about the video above are the people in the video.  They are Young/Old, Republicans/Democrats, Conservative/Liberal, Gay/Straight, Christians/Atheists....but no matter their beliefs or ideals they each have a heart for our Hayleigh girl and for our family.  We love them deeply (even the one who makes fun of Rachel for all the dressed up pictures she does with the kids ;)

This is the good side of humanity that for whatever reason gets drowned in the sensationalized negative stories of 'the world'  I personally believe God has written His moral code on each of our hearts and regardless of our religion or beliefs or choices we make in how to live....that code will win out in the end.  God bless each of you who participated in this video (whether you believe in Him or not!)  

Is it just me or does the whole "AJ won't talk to baby if it is a brother" thing a thing of the past?  Isaiah arrives home...

Young ladies....there are really good hearted, wholesome, Christ following young men out there....

Next post http://tsfga.blogspot.com/2013/10/hayleigh-faith.html