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.  

heather.r.morgan@gmail.com

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

donations@breathofhopeinc.com

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.

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

View Larger Map

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.

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.

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!!!

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.

Yet another beautiful picture and Heather and Cindy.

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....

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

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

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.

Heather has been hooked up to wireless equipment, so she is up and about, pushing her "rack" of equipment up and down the hall.

On the lighter side, looks like the CHOP Special Delivery Unit comes with gifts (smile).   Heather has a robe (pink, her favorite color), a picture frame, and they are going to prepare a dinner for her after Will's arrival.

Here are some pictures of this morning.... updates soon!

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....

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.

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.

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.

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.

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.

7 pounds 9 ounces and 4/5ths

Baby Will scored another perfect 10 at today's Dr.'s appointment. His amniotic fluid was down to 23 (22 is normal). It looks like our baby is making more progress. He weighed in at a whopping 7 pounds and 9 ounces. This is just an estimate but I can confidently say that our son is definitely growing. Fortunately for me, I am not growing too much. As the fluid goes down and he gains weight I seem to stay about the same. In fact, I think I may be a little smaller.

Matt and I tried once again to talk the Dr.'s into giving us an estimate on baby Will's arrival date. The OB took a moment to feel the exact placement of baby Will's head and told me that he is 4/5th of the way through the birth canal. That got my attention. He went on to explain that Will could come today or it could be a few more weeks. In other words, we are no closer to knowing when he is coming than before but I can confirm that he has dropped.

Matt and I are both trying to tie up loose ends at work in anticipation that little Will could arrive any time now. I am probably 90% ready for my leave which is probably as good as I could expect. It seems that every day I remember something that I should take care of before I go out on maternity leave.

To be honest with you all, it is getting pretty scary. I wish I could keep my beautiful son in my belly forever. Knowing that he is warm, safe and close to me is such a reassuring feeling. The moment I deliver he is going to have such an unfair battle ahead. I know that the only way for him to get better is for me to let him go but I am not ready to do that. I just cannot even imagine what it will be like to not feel him kicking all day long (and I mean all day long!).

Hopefully Matt will add some photos here but just in case - his cheeks are still chubby and his nose is still perfect - my personal favorite body part right now are his perfectly shaped little lips. I fall more and more in love with him each and every day. I am so blessed to have this little miracle growing in my tummy. I love being pregnant, even in the heat of the summer. So far I have had a very comfortable pregnancy. Physically I feel great!

I could never mention it often enough or come up with the right words that truly express our thankfulness - Your support is the most important element of this journey. Your thoughtful notes, cards, emails, comments, and phone calls are priceless. Your prayers are unending. We never feel alone in this battle and we know that we could not do this with the strength and confidence that Will deserves without your unending love and support.

Today's Checkup (and a few Photos).

Another great checkup for Will... today we learned a couple of new things:

1) Will's amniotic fluid continues to fall, down to a measurement of "26". This is good, showing he is regulating his environment. For your background, a measurement of "22" is normal, but Will has been registering from "30" to "33" on his past visits. Less is better. :-)

2) We visited the NICU and learned that upon Will's delivery, he will be incredibly sensitive to stimulation (visual and audible), so all/any visitors will not be able to even whisper around him. We also learned the nature of how critical the first 7-14 days are in his recovery

3) No cell phones are allowed in the NICU... we will be available through a land-line in the NICU treatment room. However, WIFI is available so we should be able to keep our blog updated on our progress.

4) We are running a marathon here - not a sprint. Even though Heather and I both knew we are facing a 3-4 month initial fight - seeing the babies in the NICU hammered home the reality of the situation and we are so fortunate to be blessed to have this level of care.

One more thing... in case you are counting, Will received yet another "perfect 10" on his diagnostics today.

Heather getting ready for her ultra-sound.

As a REAL treat, Beth Golden, a personal colleague of Heather's drove up and met us for lunch at Potbelly's after our appointment. Yumm. (Baby William loves Potbelly's.)

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.

Belated Birthday Update

We are so sorry it has been a whole week since we have given an update. I will begin by saying that everything is still going well. Matt and I had wonderful birthdays. Thank you all for your Happy wishes. I have to highlight our fabulous host family again :-) On Matthew's birthday, I had mentioned that it would be great if they could join us for singing and cake that night.

I knew it would make it special and hopefully (as many of you know) make up for my inability to sing. That night when we arrived home our host family had decorated the house with streamers and balloons. No matter what I try to do to express how special this is I just can not capture the joy that fills our host family's home.

I know that Will benefits from every moment he spends in this home being loved by this family. Only three weeks ago we were strangers and now I certainty believe that they will be in our life forever. We are better people just by knowing this family.

This weekend we had visitors and really enjoyed spending time with friends. Matt took the below photos from the weekend.... I will not give you all of the details but I will share that we finally had had a Philly Cheese Steak (so incredible), visited the famous "Rocky" steps (yes Will made it to the top), viewed the Liberty Bell, and enjoyed more water ice :-) There are still some things we would like to do in Philadelphia but we actually did a tremendous amount this weekend.

Will continues to be an over achiever and receives a 10 every time we go to the hospital. Today the nurse conducting his ultra-sound actually warned us that we are going to need to request information on the gifted courses offered when he begins school. She is continually impressed with his ability to perform both breathing and physical exercises on demand. We are 36 weeks and one day today :-) We will hit another milestone at 37 weeks. Most of our family is planning to arrive at 39 weeks when it is probable that they will induce. The hard part is knowing that little Will will arrive on his schedule. The great news is that he is looking more and more ready to face the battle that lies ahead. His progress is astonishing. We hope he stays in my belly as long as possible. It is such a reassuring feeling knowing that he is in the comfort and security of my womb.

Thank you all so much for your support. We are not very good at responding to the wonderful emails and comments of encouragement but each and every note and call is more meaningful than you will every know. Matt and I cherish you all and are continually overwhelmed by the love and prayers you are sending our way. I honestly feel like we experience a miracle every day and I know it is in response to your prayers. Please know that our gratitude it hard to capture in words but if you were here we would also have a huge hug to accompany our sincere appreciation.

Summer Fun in Philly

Matt and I had a great weekend. We actually did a lot for one weekend. We went swimming(thanks again to our host family). Matt grilled salmon (his specialty). We went into downtown Philadelphia and walked the streets around Rittenhouse Square (see the photo above), had lunch and a cool summer treat. When the heat finally got to us we found refuge at the movie theater and watched 'Get Smart'. I must tell you that I loved the movie. I laughed so much. I actually laughed at times when no one else in the theater was laughing. That would then cause Matt to laugh which only made me laugh harder. I cannot even imagine what the other movie goers were thinking of the two of us.

Today we had a check-up at CHOP. Our baby Will is still doing well. The OB told us that his left lung is much larger than he would expect and he scored another perfect 10. We got to see his sweet face too. This was the first time in two and a half weeks that he was not hiding. He has the most beautiful face. I especially love his little lips and chubby cheeks. We could look at him 24/7 but the hospital only gave us about 10 minutes. So super cute. Matt and I both are both head over heels for our baby boy. All day today Matt kept saying 'he is so cute' and 'he is the cutest baby I have ever seen'. There is nothing quite like a parent's love and we are really enjoying being filled with this unconditional joyful love. It is definitely a new and special love and in some way so familiar. Perhaps it is familar because we are both the recipients of the same love from our parents. We will try to get some new photos uploaded soon so that you may all enjoy checking out our handsome little man too.

A Perfect 10!!!!

Each Monday and Thursday at our bi-weekly checkup, Will receives a score (on a scale from 2 to 10). At today's appointment, I ask the nurse to give me a breakdown. She gave me all of the details but basically an 8 is considered to be a great score. Our little Will has had 4 of these tests so far and he has received a 10 out of 10 each time.


Matt and I were both feeling the joy of being proud parents when she gave us the news. Will's left lung continues to grow and his breathing pattern is perfect. Today was the first time Matt got to see the breathing and he lit up like a Christmas tree as he watched Will's chest contract in and out as he practiced his breathing. I was almost as happy to see Matt's genuine delight as I was to see baby Will's breathing.

The doctors and nurses are telling us that he is a very strong and (otherwise) healthy little boy. The best news we can get at this point is that there have been no changes. We are focused on keeping him in my womb as long as possible. This means I will probably have to start taking it a little easier soon.

Matt and I are more confident and happy each and every day. Much of that is due to our host family. No words could express how awesome our host family is here in Philly. On Tuesday they took us to their club pool. It was so much fun. It was great to be weightless for a while. Matt and I swam around and had a ball. If that was not enough we ended the night with a special Philly desert. Our host family treated us to Rita's flavored Ice. I love it, and I would recommend that if any of you come up to visit, you make a special trip to Rita's. Matt and I had never had anything like it and we can not wait to go back.

Yesterday Sharon (Dove) Kaufman came to Philly to visit. She and I met for lunch. It was such a special gift for her to come and spend time with me. We were able to eat some excellent food and catch up. While I would ordinarily enjoy being home, I must admit that there are some perks and getting to spend some quality time with Sharon was definitely a strong one. Ale and Neal are planning to come this weekend. Matt and I are feeling pretty spoiled these days. You should all know that your notes of encouragement, phone calls and visits mean more to us than you would ever know. Matt and I gain strength from you all and I am sure baby Will is getting his strength from you all too.

Let them eat Cake :-)

This week the Doctor's at CHOP made a request that I take a three hour glucose test. I had passed the one hour test in Atlanta but because baby Will is so big (and strong) they thought perhaps I had a late on-set of gestational diabetes. For those of you who have taken the test you know just how awful it is to endure. For those of you who are curious I will give you a brief run down.

Fast for 12 hours
Have your blood drawn for an initial baseline
Drink a glucola (an extremely high sugar content cola flavored beverage)
Have your blood drawn (one hour after drinking your glucola)
Have your blood drawn (two hours after drinking your glucola)
Have your blood drawn (three hours after drinking your glucola)

I was at the hospital from 8:30am until 2pm. We finally had lunch at 2:30pm. I was not feeling well and was actually beginning to shake and quiver from the sugar overdose and fasting. All it took was some food and I was back to normal.

This afternoon, one of the mid-wives from CHOP called to let me know that I PASSED!!!!! No Gestational Diabetes. Our baby is just a big baby. That should work in his favor during his treatment after birth. Matt and I did not believe that I had gestational diabetes but the thought of not having any sweets for the next five weeks was not pleasant. It seems like all comfort foods have carbs and I cannot imagine not having a cookie every now and then.

Many of you know, Matt and I share our Birthdays (his is the 16th and mine is the 17th) and it looks like we will be able to celebrate with cake after all.

Angels Among Us.... a home away from home

Thank you all for your prayers!!! We have been blessed in a huge way this week. While at the hospital on Monday, we spoke with a social worker regarding our need for reasonably priced housing. The hotel per diem is not something that we could sustain for the duration of our relocation.


The very next day we were contacted by Mike from a group called Hosts for Hospitals. They have matched us up with a family who is willing to share their home with us until Baby Will is born. This is relieving a huge burden - and has given us a tremendous "shot in the arm" for morale and peace-of-mind.


We moved in on Friday and have an incredible host family. Our host family have welcomed us as an extension to the family, and have provided us a wonderful setup in a beautiful suburb of Philadelphia. Heather and I are so very blessed, and enjoy every moment we get to spend with our host family.


We have a very comfortable place to live until baby Will joins us. Once he is here, Heather and I plan to move into the Ronald McDonald House which is located just blocks from the hospital.

Amnio Results

We forgot to share the good news. Friday afternoon, we got confirmation that our amnio results were good. Baby Will has no chromosomal abnormalities. This means that, just like we suspected, he is perfect other than missing the right side of his diaphragm. This is just one more answered prayer. Thank you all so much for continuing to lift us up in your thoughts and prayers.

We made it to Philly

Matt and I drove from Georgia to Washington DC on Saturday and then made the final sprint to Philadelphia on Sunday. We are still trying to get settled in . Right now we are staying a the Sheraton Society Hill Hotel but we are looking for something more permanent.

Yesterday we had a first appointment at CHOP. I had an ultra-sound and a non-stress test. I will have an appointment every Monday and Thursday until baby Will's arrival. He is getting bigger and stronger. The nurse performing the Ultra-sound said that other than the hernia William looks great. He is practicing his breathing techniques and he is very active. Unfortunately my amniotic fluid was up to 33 today. Dr. Johnson (my OB) said there is nothing to worry about because this number can change from day to day. Matt and I were still a little disappointed.

Matt's mom, Argiro, came to Philly yesterday :-) Matt has to go out of town for a business trip, so she is here to keep me company and help us get settled in our new home. Last night she took us out to a very nice dinner and it was great to catch up. Matt is leaving this evening. He is actually going back to Atlanta and will return Thursday night. He is not gone and I already miss him.

It is hard to be so far away from friends and family. Thank you all so much for your continued support. We love you all so much!!

Wrapping things up in Atlanta

Tuesday my sister and I went to my final OB appointment in Atlanta. I am happy to report that baby Will is cuter than you could possibly imagine. I thought that was a biased report because I am his mom, but his aunt agreed whole heartedly, so it must be true.



We did get a few good reports from the doctor. First, my amniotic fluid seems to be slowly decreasing which indicates that William is able to practice swallowing and is beginning to better regulate his environment. Second, the doctor indicated that he can see some new lung tissue. Although the amount of lung tissue is not as important as the lung function we are happy with any and all news of lung development. Finally, William is a growing stronger every day. He is now 5 pounds and 10 ounces. At 32 weeks that puts him in the 83rd percentile. While that is a little overwhelming to me as I anticipate labor, his size and strength could not be more important. I believe that we have all been praying for a strong baby and The Lord has answered. This little baby is coming into the world ready to fight.



Matt and I cannot thank you enough for all of your thoughts and prayers. Your encouraging words continue to astound us and invigorate us with the passion we need to be the parents baby Will deserves. We are so happy to have you all partake in this chapter of our life and we want you to know that you are all playing an important role in our lives. We could not do this without your support.

What's in a Name?

Matt and I had decided that we were going to wait to name our son until after his birth. We thought we should get a good look at him before we made such a permanent decision. That all changed when he was diagnosed with CDH. Matt put it best when he said "Anyone who is getting an MRI should have a name". I agreed and then we spent many hours on many days trying to determine the best name for our son.

Right now there is not much we can do for him, but we felt that giving him a strong name was something that would prepare him for the battle ahead. With that in mind, we first named him William Robert Morgan. William has two root words. The first meaning will or desire and the second meaning protection. This name has a long history in the Barber family and the meaning could not be more perfect. Our son is going to need a strong will and much protection. Robert is Matt's father's name. For those of you who do not know Matt's dad, he is an extraordinary man of strength and honor and our son would absolutely benefit from sharing his name. It was actually one of the most positive ways to spend our time because there is not much we could do for a son. Ensuring that he was prepared with a strong and meaningful name seemed productive.

We were so excited to finally have our son's name we called all of our close family to let them know. A few days later Cindy (my sister) called and ask me if we had thought of the nick names our son might be taunted with in school. Of course, that had completely slipped our minds. I told her that we had not even taken nick names into account. She told me that we had named our son Billy Bob. I went into hysterics. I laughed until I had tears. I immediately told Matt and we began working on a new name for our son.

Ethan had always been at the top of our list and it means strong. Strength is needed just as much as will and protection so we finally had our son's name. It is official - William Ethan Morgan.

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.