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

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.

23 comments:

Kenny and Jennifer Miller said...

Heather and Matt,

I'm praying for you all. CDH babies are the toughest. Keep the faith and hang in there. Will can feel your love and strength!

Prayers and Lung Function Chants,
Jen Miller

David and Sosaan said...

I'm praying hard for Will and you guys! Keep fighting!

Jennifer said...

I am continuing to pray for you guys.

Owain's mommy said...

I am praying for all three of you. I think the Miller's said it best CDH babies are the toughest.

Amber Myers
Owain's mommy
LCH

Liz Rich said...

We are praying for that precious boy right now!

PineapplePrincessMama said...

Sending +++ thoughts and lung function chants to Baby Will (and telling everyone I know to do the same!)

Peace,
Libby Cohen

Paula said...

I think you have a lot of CDH mommies up late tonight praying for your family. Please add mine to the list. Fight Will, fight!

Amy AKA "Baba" said...

Thinking of you guys and William. I could tell by his first photos what a fighter he is. Fight William, Fight!

Liz and Shane Nelson said...

We are praying for Will and you.
Liz

Tina West said...

Thanks for taking the time to update, as I'm sure you are exhausted.

Lifting all three of you up in prayer.

Tina West
Mom of Ella West, CDH survivor
(www.ellawest.com)

mummy to angel SKYLA said...

praying for you guys. thinking of you all

Elizabeth said...

Keeping you all in my thoughts, prayers and LUNG FUNCTION chants and it is true CDH babies are the toughtest and the most amazing fighters. Focus on Will now - not the numbers...

Elizabeth

Rosie said...
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Rosie said...

We are praying hard for Will to keep fighting! Can CHOP put Will on ECMO by cannulating into his heart? This procedure was used on my son at UofM, as he was not able to receive ECMO the conventional way.

Praying that Will is able to do well without ECMO.

theparkerreesefoundation said...

Heather and Matt,

We are praying for y'all.

Chris said...

I like what Rosie said. Is that a possibility for Will?

Tracy Meats said...

Praying hard for that handsome little boy of yours!! CDH babies can do amazing things--keep fighting precious William.

Tracy Meats - WY State Rep. of Cherubs and mom to Ian (LCDH, born 4/3/04)

Brad, Kellie, Lucy and Baby Carter said...

We're praying for you. Although we haven't started off on our ride yet, remember that all CDH families say this is a roller-coaster ride, so just concentrate on that beautiful little boy and know he's a fighter already!

Brad, Kellie, Lucy and Baby Carter said...
This comment has been removed by the author.
Gina said...

Praying hard for Will... CDH babies are fighters.

Gina
Wyatt's Mom

fiona said...

dearest Heather & Matt, I'm thinking of you all right now and sending you lots and lots of energy. Thank you for the updates. You are all in my prayers. lots of love, fi

David said...

Dear Heather, Matt and Will,

I just wanted to let you know that I am thinking and praying for you all during this challenging time. Keep up the good fight.

Love,
David Duley

Liz Rich said...

Still praying. Keep fighting Will!!!!