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, July 22, 2008

A look at our visits to CHOP

Things have been good. Real good.

We have settled into our "July routine" as it has become known to be. Both Heather and I have cleared our calendars for 2-4 hour CHOP (Children's Hospital of Philadelphia)
visits on Monday and Thursday of each week. Each visit brings more information about Baby William as he continues to prepare for the upcoming battle.

Heather has been keeping everyone up to speed on our progress, and there continues to be good lung development on the left side of Will.... I thought I would prepare a blog entry with some background and color on CHOP and our visits.

The Special Delivery Unit

One of the amazing elements of the CHOP program for CDH is the Special Delivery Unit (or SDU), is a complete neonatal delivery facility in the wing of CHOP that also houses the neonatal intensive care unit (or NICU.) The SDU allows Will to be born next to the life-saving machines and specialists that will help him stabilize and prepare for surgery.

The SDU happens to also be a clean, friendly, and (if I can use the word) happy place. The specialists know us by our first name (ie: all of us... Heather, Matt, and William) and welcome us with hugs and questions about our stay in Philly.

The Non-Stress Test

If you are like me, you probably heard of a cardiac stress test. Well, baby Will receives what is referred to as a "Non-stress" test twice a week. In this test, Heather is strapped (and I mean tied down!!) to a table with ultra-sensitive cardiac sensors that listen to baby Will's heart.

Like any echo cardiogram, a machine records his heart rate on an old-fashioned paper-plotter. The test also records how his heart rate increases as he moves. This is the non-stress part of the test... as the movement is all natural.

Here is a picture of Heather and Will all "strapped in." You can see the machine to the right of her... (and the attending Midwife is Karen... one of our favorites!)

The UltraSound

The best part of the visit is the ultra-sound. We get to see amazing pictures of William and get an update on his development. The Ultrasound equipment is state-of-the-art GE stuff, and it produces amazing 3D and "4D" images which include motion.

The Ultrasound is typically administered by a Nurse or Utrasoundaugrapher, and then double checked by a High Risk OB Specialist from the CHOP team. Here is a picture of Heather observing the patient monitor during a live "4D" action shot of baby William.


Repetition is a good thing...

These visits are very similar, and that is exact what the "doctor ordered." (Sorry, please forgive this one! ;-) Baby Will has earned a gold-star this month, as he has not decided to make an early appearance, and continues to have marked lung development on his left side.

We also have a strong baby, who continues to score "perfect" on his cardiac non-stress tests and is tracking larger than most babies do... In fact, CDH babies are often smaller, so his growth is another point of strength and differentiation for him. The larger he is, the more room he has for his compressed lungs to develop.

We hope you enjoyed our "photo essay" of our weekly visits.... till next time... and thank you for your continued thoughts and prayers.






4 comments:

Brian and Cassi Reed said...

Glad to hear everything with Will is going great. Love to hear that he is still growing, wish our little lady would follow suit, she is still under 5 pounds, so I have been trying to pack in the protein. Do you have an induction date? We got a tenative one, but it is not for sure since I want our little girl to be as big as possible. Thinking of you and your family- cant believe it is getting so close and our little ones will be here!

The Reeds

Unknown said...

Hi Brian and Cassi - thank you for your note. We are expecting induction around 8/8/08 - but we also want to keep him in the oven as much as possible.

His lung development really improved in the last several weeks. Month 9 is very important for this - as such we want him to get as much lung as possible.

Forgive me, I (Matt) haven't kept up with your story. Where are you guys? How fare along are you? Right side CDH or left?

Our prayers are with you!!!

Elizabeth said...

Home stretch - I am glad things are going well. The NICU tour really brings the reality down upon us. Will will be in a very good place - just keep up the positive thoughts.

With thoughts, prayers and LUNG FUNCTION chants,
Elizabeth

Cinda said...

Any day now! Ethel is getting up to speed and we will take good care of things while you are taking care of yourself and family. we are all praying for you and proud of you for your amazing courage and spirit! we will stay closely tuned!! Cinda