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,

Mommy

Friday, June 20, 2008

Diagnosis


As many of you know, at 28 weeks gestation, our son (William Ethan Morgan) was diagnosed with Congenital Diaphragmatic Hernia (CDH). CDH is a birth defect that is as common as Downs Syndrome, Spina Bifida or Cystic Fibrosis. The reason most people have not heard of CDH is because it is the most fatal. There is no known cause for CDH. The promising news is that the babies who do survive may go on to lead very full lives.



CDH occurs when the Diaphragm does not develop fully, allowing the abdominal organs to move into the chest cavity. This typically occurs on the Left side of the diaphragm but it may occur on the right side and possibly there could be no diaphragm present at all. Out son's case is a Right Side CDH which represents approximately 2% of all CDH cases. Based on our Ultra-Sounds, MRI and Fetal Echocardiogram we know that Will's case is severe. His Liver has moved into his chest cavity and completely compressed his right lung. His liver has also pushed his heart to the far left of his chest cavity resulting in an extremely small left lung. He will require immediate NICU care at birth and once stable he will have a surgery to repair his diaphragm. In the best case scenario, we will be in the hospital for two or three months following Will's birth. If you would like to learn more about CDH please take a look at the following link: http://www.chop.edu/fetalsurgery/everything_in_place/index.html



Matt and I explored medical care here in Atlanta and were surprised to discover that we would not be able to provide adequate care at Northside and Children's Hospital of Atlanta. CDH babies are the most fragile and in Atlanta I would deliver at Northside and Will would be transported to Egleston. Egleston is the only ECMO center in Atlanta. ECMO is a heart and lung bypass machine that may be needed immediately due to the severity of Will's CDH. Therefore the transport itself is not acceptable. In addition, Egleston does not operate on children who are on ECMO due to the increase bleeding that results.



We have determined that the best care available for William is at Children's hospital of Philadelphia (CHOP). There I am able to deliver Will in a room that is connected to an NICU where ECMO will be prepped in case he requires it immediately at birth. CHOP also offers surgical repair to CDH babies who are unable to be weaned off of the ECMO machine. We hope this is not necessary but would like to have every treatment option available to Will as he fights for his life. There are a few hospitals in the country who specialize in the care of CDH babies and we are fortunate to be able to ensure that our son receives this level of care.



My pregnancy has been the joy of my life. I have never been happier :-) The best news is that while in utero Will has no discomfort because for now I am providing him all the oxygen he needs. There is a possibility that he may come early due to high levels of amniotic fluid resulting from Will's inability to properly regulate his environment. We are planning to be in Philadelphia June 29th just in case. This will also allow the doctor's at CHOP to become more intimate with Will's case prior to his arrival.



Matt and I are really doing great. Please continue to pray for us. Sometimes you hear the saying that God will not give you more that you can handle. That could not be more untrue. It is much better stated that God will not give you anything you cannot handle with His strength. We have faith that this is part of God's plan for our life. We are fully leaning on Him for strength and guidance to make the best decisions for Will's care. We feel His presence in our lives more today than ever and we are continually thankful for the support and love He is sending our way through our friends, family and medial professionals.



We will do our best to keep this Blog up to date so that everyone can join us in the battle for Baby Will's life.

14 comments:

Kenny & Jennifer Miller said...

Hi Morgan Family! I just randomly came across your blog from the McDaris Family Blog. I am the mommy of a happy 3 month old CDH and ECMO survivor. I just wanted you to know I'll be praying for Will and that CDH can most definitely be beat! You can read our story at www.babymiller08.blogspot.com

Jen Miller
Mommy to Sofia

Vicki Jensen said...

Hi Morgan family! I will add Will to my list of CDH babies that I pray for. My son, Jack, is a LCDH and ecmo survivor. His case was very severe but he turned 10 months old today and he is doing great.

Since you seem to have strong faith I will tell you what our priest at Johns Hopkins told us. One day when jack was pretty bad and it was taking a toll on us our priest said that we may ask why our God would allow suffering of an innocent baby. He said that it might be to give us the gift of witnessing a miracle in our lifetime and that God gave us Jack because he knew we would love him and we would be strong. That gave us such comfort and I hope it does for you too.

Vicki Jensen

www.babyjackjensen.blogspot.com

Elizabeth said...

It is beautiful so far - you just need more pictures of that handsome little Will!

These babes are all touched by angels - remember that - they do the most amazing things.

With thoughts, prayers and LUNG FUNCTION chants,
Elizabeth

Dotty said...

your blog is wonderful and i look forward to reading and Praying for you. as a fellow CDH mom i know the pain you feel and the hope you have. never loose that hope, never let your faith become wobbly. in Christ all things are possible! our Zach has had a rough road, he was released at 5.5 months old only to go back in for respatory distress 5 days later. after another 2 months in the hospital he is home, has been for about 2 weeks now. dont loose hope. another mom on here that posted, Vicki, i believe had a maternity shirt, it said "expecting greatness" im changed the term now as we are no longer expecting, and i still use "expect greatness" its just been a comfort saying to me, i hope it will for you too. if you like you can check out our blog, i hope it brings hope to you.
its on carepages.com his page is Zacharydavis
hope and blessings and many prayers!
Dotty
mom to zachary lcdh 10-26-07

Cindy said...

Hi Heather and Matt. I found your blog on BOH and have added Will to the CDH babies that I keep track of and pray for. My daughter Claire was born last year in Birmingham, AL with a "moderate" left-sided CDH and is doing great now.

~ Cindy
mom to Claire, 6/7/07 LCDH
http://babyclaire07.blogspot.com

MScott said...

Dear Heather and Matt,

The blog is amazing. Thank you for sharing it with us. We will continue to pray for all of you. We love you so much.

Love,
Madina and Bryan Scott

Mandy Li said...

Heather and Matt, this is a beautiful story and we are so appreciative and touched that you are sharing it with us. Our thoughts and prayers will be with you during your time in Philadelphia. Two of Mandy's friends from college are doctors in the Philly area, so she will send their contact info to Heather so you guys will have some friends in the area to lean on. Best wishes for a safe journey north!

Mandy & Charlie Li

Grandma said...

A message of gratitude to all of you who are sending words of encouragement and prayer to Heather and Matthew. Please accept my heartfelt thanks from their extended family. Your messages mean so much to Heather and Matthew and to those who love and cherish them and their little one.

Ale said...

Heather and Matt,
Your son is so lucky to have such loving and caring parents. Your strength and faith is amazing and thanks for allowing us to be part of the journey. Philadelphia is just 2:30 away from us!!! Please let me know if you need anything and I will be there!! Our prayers continue to be with you and Will.

Love,

Ale and Neil

Tim said...

Heather and Matt,

We are touched by your story and will keep you in our thoughts and prayers.

Tim & Mandy Sweeney

furlong3883 said...

Heather and Matt,
Baby William Ethan is very blessed to have you two as parents. If only it were so that every baby were able to have two parents who show such grace, strength, love, and judgement. God works in mysterious ways, but he surely sees that you are perfect parents for an imperfect world.
All my thoughts and prayers,
-Cynthia

Kelly and Matthew Nelson said...

Hello Matt and Heather,

Melissa Chalker forwarded us this blog. While it is so good to hear an update you guys, I am distressed to see you are having a difficult time. Please know these things...we love and miss you guys in New Haven....we love your baby Will too. We will send our love and healing thoughts your way. Matthew and I know only too well how excruciating it can be to worry for the life of a baby once complications arise. We are just so glad that there is good help and support medically to get Will through this. Sadly, there was nothing that could have been done for our Lola when my water broke too early and she was ultimately born too early to survive. Believe that this will be alright....modern medicine is miraculous,( you have incredible specialists to support you) and the power of thought even more so! Take good care and please reach out to us for anything at all...we are here for you. Our number is: 770-444-3499

Love to all three of you....we can't wait to meet little Will when all this trial is a distant memory :)

Kelly, Matthew, Liam and Lily Nelson

NanaBuni said...

Morgan Family>>>Sending much love to all 3 of you and prayers for Will. Angels are watching over him and love and strength are descending upon all of you.

NORVA said...

Good luck apt hunting in the city of brotherly love! What an appropriate name for a place that you will be to bring William into the world! Again Heather, please know that your teammates are thinking of you continuously, and are there to help! Your amazing postive attitude is true inspiration to all of us!!