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

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
22906
888-264-2340

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
30022


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....

Early Morning Update....

We are still here... and still waiting for Baby Will.  We had a mix-up with the Epidural, and after pushing for 2 hours, the epidural interfered with the contractions, bringing this whole party to a halt before Will's arrival.

We had to stop our delivery, turn down the doses of the epidural, and wait for the medicine to wear off a bit.... and we were almost there!  

But, this is just a delay...  we expect to restart the pushing in the next 30 minutes...

BTW:  Heather is sooo tired... I wish we could just let her sleep for a couple of hours.  She has been up nonstop for 24 hours, and its been 48 hours since she had a decent night sleep. ;-(


3:27AM Video Update from Matt

9 Centimeters Dilation, its time for Will to arrive!!!

video

Monday, August 18, 2008

Our CDH Battle: Next Steps after Will arrives


Heather is doing great... she continues to make amazing progress.

Lets turn our attention to Baby Will for a moment... and his next steps after delivery. We are excited to meet our son in person, but we are expecting quite a fight when he arrives. For those who have just started following us, Will has right-side, liver-up CDH. His right lung is severely impacted by the presence of his liver, and his left lung has been impacted by a shifted heart. Luckily, our son has no other illnesses or abnormalities.

When William arrives, he will likely be delivered in critical condition, unable to breathe and in pulmonary distress. He will require immediate medical intervention.... by skilled experts who know how to deal with this problem.

This is the moment... this exact moment... is why Heather and I have uprooted our life and moved 1000 miles North to Philadelphia. CHOP is 1000x more qualified to deal with this condition than our home town of Atlanta.

Let me walk you through the next steps for William, and how CHOP has planned the approach for Will:



See this Window? You may ask... "Why is there a window between two rooms?"... well, this is the magic of CHOP's SDU. Inside this window is a life-saving NICU stabilization room, equipped with the latest equipment dedicated to stabilizing our son. This window is right next to Heather's birthing bed side. At the time of Will's birth, this room will be filled with 15 (yes, fifteen!!) doctors that are part of the CHOP CDH response team. These NICU staffers will be responsible for by-passing Will's problems and preparing him for his corrective surgery, and his three month visit at the CHOP NICU.



We opened the window earlier, and took this picture of Will's lifesaving bed. This bed is already primed and ready for our son. The CHOP CDH team has been in-and-out of this room all day, ensuring it is equiped for Will's specific condition. You can see the incubation technology, medical sensors, the gastric-de-gassing technology, the infant heater, oxygen, vacuums, ECMO on standby, etc. This environment is 100% sterile... and is literally an arm's length of William's birthing place. Once Will is stable, he will be transfered into the formal CHOP NICU, which will be his home for the remainder of his fight.

So... for the rest of the delivery, we will focus on Heather (of course), but we will update the blog on Will's first steps into his personal fight.

Updates soon...




Update: Epidural In - 4 Centimeters and Dilating

Heather has had a remarkable last 24 hours...  we arrived at CHOP with Heather is a "not favorable" condition for delivery.  She responded to the Cervidil to prepare her Cervix perfectly, she responded to inducement...perfectly... and she has been incredibly calm and patient throughout the day.  Now, she is not only favorable, but is "in active labor" with Baby Will's arrival coming in the next 3 to 9 hours.

This has been amazing job by CHOP.  Speaking of CHOP, there is a reason why these people have been so recognized as a leader in Children's care.  The delivery process has been managed, measured, and executed with flawless agility and care.  The big fight remains in front of us (ie:  Will's CDH), but we have utmost confidence in the people of CHOP to cure him and deliver us a healthy baby boy.  More on the CDH fight in an upcoming post....

At this time, Heather continues to make excellent progress in her labor.  She is now dilated about 4 centimeters, and she now has an Epidural administered.  Funny, as she continues through the labor process, her stack of monitors, drips, and (now with the Epidural) buttons for drug doses continues to increase.

One of the most significant drivers for Heather has been her sister...  wow... I am witnessing a relationship so deep that it defines family and love.  Cindy has been next to her all day, walking with her, helping her through the contractions...  Below are some pictures of today.



Heather and Cindy walking the halls of the Special Delivery Unit of CHOP.  Walking helps drive the delivery process... having gravity help Will make his way down the birth canal.




Another picture of Cindy and Heather, making the rounds...  (Remember, Heather has no anesthesia and is handling the contractions with a smile.)



Another picture of Heather and Cindy walking.  



Picture of the family supporting Heather.  Her father is sitting right next to her, and has been a rock supporting her.  He made the trip from Atlanta on a moment's notice to ensure he is at her side... and has stayed there (including staying at the Hospital all night tonight).  My mother, father, and brother have made the trip from Louisiana to be here for our first child to be born.






Update: Active Labor - 3 centimeter dilation, 50% afacement

We are now in active labor, with dilation of 3 centimeters, 50% afacement, and the baby is now positioned at "zero" measurement.

This means we have made progress today, and we continue to move forward for Will's arrival.    Baby Will is tolerating labor well, which is the most important metric.

We are now getting estimates for his arrival.  Dr. Zachian is projecting about 9 - 12 hours MORE of labor, but is trying to increase the induction to speed things up.

Heather is back in bed, working at labor ... family by her side...

Updates soon...

Grandpa Weighs In....


video

Mid Afternoon Update


Heather is doing GREAT!  She is now into labor, with contractions every two minutes and increasing in intensity.  She is back in bed now, with family close by.  She has rejected all medication thus far, but we believe this trend is likely to end soon. ;-)

As she rests up, we are still expecting Baby Will's arrival today.

Oh yea, she is now on a diet of ice-chips, water, and ice-cubes.  Yummy.

Updates soon.


Afternoon Update from Heather

video

Contractions increasing...




Contractions increasing...  regular pattern...  labor is coming!!!

Updates soon...

Water is broke... induction under way!

Ok, things are moving fast and furious!  We had our water "manually" broken and drained.  (Not fun!)  Now, we are on Petosin for induction!    Dr. Zachian is administering the Petosin at 6ml increments... increasing to find the threshold for affect.  

Heather is now able to walk around as we wait for her contractions to shift to full-blown labor. 

Our family just arrived at the hospital... 

Updates soon...

Cervadil worked perfectly...

Dr. Zachian (our high-risk OB) words were music this morning.... "The Cervedil worked perfectly.  We are now favorable for delivery."

To those who are following our story, but haven't read every post (smile), the Cervedil was to soften the Cervix to enable induction and was administered last night.  Heather (and Baby Will) needed this to happen before we could proceed to the next phase.

On the side note, Dr. Zachian is a real hoot.  He is so excited to bring Baby Will into the world... it is rubbing off on us and the rest of the team here...

So, next steps for us is to SHOWER!  Heather just jumped into the shower, and I will follow soon after.  

....then we start induction!!!!!!

Updates soon....

Early Monday message from Heather

video

Good morning... Hurry up and wait.

Ah, hospital sleep is so interrupt driven!    Heather and I enjoyed medical checkups to awaken us every 10 - 15 minutes as we powered through our first night.    Of course, we were very happy to have the attention for Baby Will.

No big news on the baby arrival ... Heather is contracting every two to three minutes (which is good), but it may be tied to the Cervadil treatment to prepare the cervix for delivery.  We are waiting until 9:00AM, when the Cervadil treatment ceases, to see if the contractions continue.  If not, then we are expecting induction.


Sunday, August 17, 2008

All checked-in for Delivery...

Quick blog entry this time.... so much going on!

We had dinner at Champps restaurant in downtown Philadelphia for Heather's last official meal before we headed to the hospital.  We arrived at CHOP on schedule at 6:00PM, and toted everything we needed for William's arrival.

List of goodies included 1)   Four pillows (including two body pillows),
 2)  Four days worth of clothes for myself and Heather, 3)  Laptops (crazy eh?  How else would you expect to read this update!!), and 4) William's first diaper bag, first teddy bear.

I will be staying with Heather at CHOP for the next 4 days (and nights)

Heather and William had a quick "non-stress test", and we are waiting for the Doctor to visit us at 8:00PM tonight to begin to process of bringing William into the world...

Some pictures are below:


More updates soon....

Thursday, August 14, 2008

Stork planning for Monday delivery

Good News. Baby Will received another perfect 10 on his Ultra Sound and Non-Stress Test. Our OB Team at Chop (after extensive deliberation) has decided to induce on Monday 8-18-08. Matt and I are so happy. Many of our family members are coming from Georgia and Louisiana to be here for the big day. I will actually go into the hospital on Sunday night and begin the process. Of course, there is still a high probability (40-50%) that we will move to a C-section based on Will's ability to endure my contractions but it feels much better aiming for a natural delivery as our first option.

Thank you so much for your prayers and support!

Our sweet baby boy is ready for his debut. We will let you all know as soon as he arrives.

Monday, August 11, 2008

The Final Countdown

Today's appointment went well. Perhaps because we are so close to my due date (8-17-08), we met with the OB today. He completed both the Ultrasound and Non Stress Test. Will received another 10 but there was no sign of impending labor. I ask when we would stop waiting and intervene (thinking induction) and I was told that we will be waiting until next Monday. If Will does not decide to come on his own before Monday then they may determine to move forward with a C-section. This is not my preference but the doctors believe that if Will continues to grow at his current pace and does not naturally move into labor then we should proceed with a C-section.

Although a C-section is not my preference, I want to do the best thing for Will no matter what. I know that the Doctors are the professionals here so I try to keep my opinions to myself. That is not easy for someone at 39 weeks. I am so emotional. I thought by now my body would be accustom to the hormones but I seem more sensitive and moody now than ever. Poor Matt!!! I really am blessed to be married to someone who can love me even when I am crazy.

I have not been 100% the last couple of days. I have a yucky feeling in my tummy and I am a bit dizzy. One of the mid wives told me that she has know that yucky feeling to be a sign of impending labor. I hope she is right. I was beginning to think I was coming down with a cold or stomach bug. Natural labor would be great. This may just be wishful thinking but I am OK with that.

I have mentioned that Matt's parents are here awaiting baby Will's arrival with us. It is really overwhelming that they are here to support us through this experience. Now all we need is baby Will. I am not rushing him but I must admit I am ready for him to come at a moments notice.

Matt packed our overnight bag this morning. I got my maternity leave form completed by the hospital. I still have a few things to do for work but nothing that my team could not manage without me. Matt is trying to wrap up his work too but it is tough. Tomorrow he is planning to sign a lease for office space within 2 miles of the hospital. That should help him balance work and daddy duty most efficiently. He is going to be the best daddy. Will is one fortunate little boy.

We will let you all know as soon as we get any new information. For now we ask that you continue to pray for us and especially Will.

Friday, August 8, 2008

It is not going to be 8-8-08


We had been trying to convince Will that 8-8-08 would be a really cool birthday but it seems he has other plans for us :-)

Great news to share. This week Matt and I were able to meet with Will's surgeon. We learned that over the past 6 weeks baby Will has not only impressed us but the CHOP surgical team sees his progress as promising. That is the word the surgeon used - promising. After weeks of working with my Dr.'s and the wonderful mid wives it was such a treat to meet Will's doctor. We knew all along that they have been keeping a close eye on our weekly visits but it was fantastic to get to sit down and discuss what we might expect once Will arrives.

Will, as you have all come to expect received another perfect 10. We do not want to forget to celebrate each of his accomplishments. We are no closer to knowing when he is going to come but after Thursday's appointments we are feeling a little more prepared. That might be an overstatement but perhaps we are feeling more comfortable not being prepared because the medical team at CHOP is definitely prepared.

Matt's parents arrived safe and sound. We are enjoying having family close to not only support us but also to enjoy Philadelphia tourism. We do not have any definitive plans for the weekend but I am sure we will have some fun stories to share with you soon.

Today Matt took me to have some professional maternity pictures taken. It was really nice and we now have a keepsake of our pregnancy to share with Will. It was emotional for both of us. We are so excited to be parents but took a moment today to really think about how much we have enjoyed this pregnancy. Will has blessed our life with so much love even prior to his formal entrance into the world. God has been so good to us and by far Will is the greatest gift of all.

Tuesday, August 5, 2008

No News = Good News

We went to our Doctor's appointments on Monday expecting to get an induction date. Well it looks like baby Will is not anticipating his arrival as much as mommy and daddy. Since they see no cervical changes, we are just waiting until next Monday to check again. That being said, the doctors were clear that baby Will can arrive when he gets ready so although we are not expecting him to come this week there is still a chance. For those of you keeping score, our sweet Will got another perfect 10 this week. He is stronger than ever!

Matt and I have been taking it easy. We both know that we are going to need our energy for baby Will's arrival. Matt's parents will be arriving on Wednesday. My family will be joining us as soon as we get some signs of labor. Will is going to have a large fan club here in Philly when he arrives. I also know that everyone following Will's journey from around the world will be pulling for him too!

Thank you so much for all of your thoughts, prayers, and support.

Friday, August 1, 2008

We made it to August


No surprises this week. Will got another perfect 10 - he is quite the over achiever. Sadly, I was not able to see his luscious little lips this week but I got some great action shots of his beautiful little baby feet. I have been feeling those little feet for months now but during the Ultrasound we got the best view. Nothing much is cuter than baby feet :-)


This week has been pretty uneventful. Matt and I got some great belly photos which we will upload.... It is pretty amazing how much less modest I have become with my body now that it has a greater purpose. When I first got pregnant I wanted to only have clothes that hung loosely on my belly so that no one could see. Now I find I love my belly. I love to rub it and to look at it in the mirror. I know it seems odd because it is my body but it is quite surreal that I actually have a little baby boy inside.

Highlights from this week also included getting a very special letter from one of our Host Family's daughter. Can you believe that while away at camp this precious little teenage girl took the time to write Matt and I??

She not only wished us and (especially) baby Will well, but she also shared some of the fun she is having at camp. I just started to joyfully cry when Matt brought me the letter.  Last night, the Host mom invited Matt and I to join her and a friend for an evening of girl talk. Matt lasted for about an hour and then went back to work (finishing up some stuff before he unplugs for the birth) but the three of us were up late into the night.  It was so much fun. It has been a while since I was able to have quality time with my girlfriends and so this was really special. 

I also receive a lot of parenting/wife advice. With all of the abnormal things we are dealing with last night felt extremely normal. It is so wonderful to be accepted by this family in such a genuine way. I still think they are angels on earth and I really look forward to the relationship that we will maintain with our host family when we return to Atlanta. I also look forward to see how many ways Matt and I are changed by knowing them and being cared for by them.


Matt and I will never really will be ready for our little one to arrive. We both have our hesitations but I must share that we know we are getting closer. Everyday we talk about all of the wonderful things we are looking forward to enjoying as parents. I have been dreaming and day dreaming about baby Will on a regular basis and really psyching myself up for the battle ahead. I know baby Will is ready. He has shown so much growth, strength,  and determination over the past few weeks here in Philly that it is evident he is up for the challenge.


With all of that said, the doctors are still not making any predictions regarding Will's arrival. They plan to check my cervix on Monday and then we should know if my body is actually getting ready for delivery. I think if we are far enough along they will give us an induction date. Then it will be up to Will to come on his time frame or wait on the induction.


As always, we love you and thank you all for supporting us along the way.    Please keep your thoughts and prayers coming.