Mommy's Letter to William Ethan Morgan

My dear sweet baby Will,

I loved you before you were even conceived.  I will never forget the moment I knew you were growing in my belly.  I was singing and dancing and could not wait to share the news.  I thanked God for you every day and focused on loving every moment that we had to share.  My heart grew over the past 10 months to allow me to experience a love that I never knew possible.  Each day my love for God grew because of the miracle he allowed us to share.  I had more love for your father who cared for the two of us with more dedication and concern than I had ever seen.  I had more love for you who brought more joy into my life than I ever knew possible.  Yes the past 10 months have been the best 10 months of my life.

I know that you are with God today.  I may not understand his plan but I do know that if he needed someone full of love he choose the right boy to help him.  Your daddy and I love you so dearly but that is just the beginning.  You have grandparents, aunts, uncles, friends, and even perfect strangers who have been moved by your journey.  You, my sweet precious William, have in your short little life been loved more than many who have very long lives.  You have inspired so many of us to be better people and to make the most of the lives and our physical health that we sometimes take for granted.   We are so very proud of you.

I am your mommy and you are my son - the son that I prayed for and loved while you were here on earth.  I know that I will long to have you in my arms until the day I see you in heaven.  Until then, I must accept that you are with God in a much better place.   As hard as we tried to keep you to ourselves it looks like God too knew that you were an amazing person even before you were born.

Daddy and I will always love you.  

Hugs and Kisses,


Monday, November 17, 2008

A final thank you!

It has been a long time since I have posted.  Matt and I want everyone to know that we appreciate your prayers and support.  This did not turn out the way we had imagined.  We thought we would be in the NICU beside William's bed this Thanksgiving.  Instead we are still trying to comprehend how to move on without having Will here with us each day.  We long to hold him in our arms and watch him grow and become a healthy child.  In spit of all of these emotions we have found peace.  I know that sounds unbelievable but God has wrapped us in His grace and fills us with a little more joy each day.  

Normal is no longer part of our existence.  We have no desire for normal now because life without our son cannot be normal.  We are OK not being normal - in fact I guess we never really were normal in the first place.  The hardest part is looking at photos of our summer and trying to comprehend that it all came to an end so quickly.  The long battle that we were preparing to enter ended before we were ready.  I guess there is really no way to be ready but we sure spent a lot of energy preparing.

We are not planning to keep up the Blog although we will be adding a final entry once we have Will's monument in place.  Then we will create a final entry that will include all of our photos and possibly even some video.  I do not want to spoil the surprise but we have a ton of photos and video for our little guy's one day of life.  He was such an inspiration to so many we feel it is only appropriate to share more with all of his fans.

Matt is back at work but I will not return to work until January.  Since I had the opportunity to take off some extra time I took it and feel quite good about the decision.  I am enjoying my time off and looking forward to a fresh start.  I do not think I could stand to stay home full time but knowing that I am going back in January helps me not take this time for granted.

Again, we could never tell you how much we appreciate your thoughts and prayers.  As always we have felt your support and love.  There have been very few moments when we lost sight of the joy Will brought to our lives and even fewer moments that we forgot the gift that he was to our lives.  Each day we have been overwhelmed with the letters and donations of family, friends and strangers.  This has been such a blessing because it is a continuous reminder that Will was with us and that he made a impact on the world.  Without it I think there would be times that it would feel like a dream rather than reality.

I am continuing to get support at church and through Breath of Hope.  We are still in contact with Children's Hospital of Philadelphia and we are confident that soon we will know either how to better treat or prevent this disease all together.  

Thank you all for standing with us during this most difficult time.  Please contact us if there is ever anything we could do in some small way to provide support to your family.

Wednesday, August 27, 2008

In lieu of flowers...

We would like to provide information regarding donations in lieu of flowers.  We are going to encourage people to chose between two options for donations in Baby Will's honor... they are also free to contribute to both. 

Information is as follows:

Option One:   For Congenital Diaphragmatic Hernia Research and Prevention

In lieu of flowers, please send gifts for the Center for Fetal
Diagnosis and Treatment in memory of William Morgan to The Children's Hospital Foundation, P.O. Box 827790., Phila., PA 19182-7790.

Please write "in memory of William Ethan Morgan" on the memo line of their checks. This will allow the Foundation to identify gifts in memory of William as they come in.   
Note: This is the first fund at the Childrens Hospital of Philadelphia dedicated to CDH research and prevention, formed by request of the Morgans.

Option Two:  For Congenital Diaphragmatic Hernia Support and Awareness

In lieu of flowers, please send gifts honoring William Ethan Morgan to

Breath of Hope Inc.
PO Box 6627
Charlottesville, VA

Please write "in memory of William Ethan Morgan" on the memo line of their checks. This will allow the Breath of Hope to identify gifts in memory of William as they come in.

The Morgan family will be notified of all donations and will respond with appreciation cards.

Friday, August 22, 2008

Memorial Service for William Ethan Morgan

Baby William Ethan Morgan will be put to rest in Alpharetta, Georgia on Tuesday, September 2, 2008.    The Morgan family would be honored by your presence at the Memorial service which will be held at 2pm at North Point Community Church.  

Here are the details:

North Point Community Church, 2:00PM EDT
4350 North Point Parkway
Alpharetta, GA

Matt and I are returning to Atlanta early in the week and we will post another update with more details regarding the memorial as more plans are made.

Wednesday, August 20, 2008

William Ethan Morgan Born 8/19/08, Passes away

It is with great honor, pride, love, and respect that we fought alongside William Ethan Morgan against CDH.   William is one of the bravest people ever to grace humanity, and fought against CDH with dignity and courage.

William Ethan Morgan has touched more people in his one day of life than many people do in a lifetime.  Through his courage,  family's fighting CDH are able to hold Baby Will up high as one of the best examples of dignity, love and determination in this world.

Heather and I were joined by our family as we stayed at his bedside throughout his final fight over the last evening.  Baby William passed away late this morning, family at his side.

The below photograph was taken at his final battleground, in the CHOP NICU.  Our family was at his side, with Heather powering through an all night vigil at Baby Will's bedside  (Heather has been awake for 72 hours straight.)    The CHOP team made countless attempts to adjust his oscillating ventilator, his medicine, and his oxygen/nitrogen mix.

The below photograph is Heather holding Will in his final moments, still connected to the NICU treatment equipment.

The below photo is Baby Will and his father connecting in person, in his final hours.

Baby Will's NICU battle ground, with the equipment sustaining his battle against CDH.  His mother is right at his side.

This below photo is of Baby William connected to the Oscillating ventilator.

In the below photo, Baby William Ethan Morgan is being looked at by his father in his final hours of his battle. 

The below photo is a close-up of his precious face.  You can see God in his eyes.

Below is Baby William, free of his battle equipment.  Clean and Beautiful.  He weighed 11 lbs at his passing.  He was not weighed at his birth.

Special thanks for family and friends who have been providing unending support of William     Your love and compassion will be felt by us for rest of our lives.

He is with God now, in a far better place than he could ever be.

We will be hosting a Memorial Service in Atlanta the week of August 25th.  We will post the details later in the week.

Tuesday, August 19, 2008

Baby Will's first 24 hours

Baby William has had a rough first day.  Upon birth, his immediate response to ventilation looked promising.  In fact, his immediate gas measurements were 90% of normal, which is very good for a CDH baby.

Unfortunately, this measurement didn't hold at this positive level.

Baby William's ability to ventilate with his damaged left lung deteriorated throughout the day.  The CHOP NICU team switched him to an oscillating ventilator, which (like standard ventilation) had positive initial reactions.

Like the above, this too failed to hold the gas measurements required to keep Baby Will in the "green zone."

We opted to have Dr. Adzick connect Baby Will to ECMO (external heart/lung bypass) which required surgical procedures.  During the the two hour surgery, Dr. Adzick's experienced team found that William's arteries and veins could not sustain the ECMO catheters.  William's arteries and veins are "plexiform", which means they are like thin branches on a tree and could not support a catheter. 

This is a major set back for Will.  We had no choice to reverse the ECMO surgery and try re-engaging with the Oscillating Ventilation.  

The CHOP surgical team are trying to stabilize Baby Will by using a combination of drugs, steroids, ventilation settings, and minerals (such as Potassium.)  

Heather, after major surgery from the c-section, is camped out with me, Michael, and Trisha at William's bedside while they continue to try to stabilize him.

Updates soon.

Pictures of Baby Will being stabilized....

Baby Will Arrives!!!

We will explain the details...later... we are busy right now.

He arrived via c-section at 8:25AM on 8/19/08 after 24 hours of hard labor.  Mom is doing well, Baby Will is stable, but still being attended to.

Updates this afternoon....