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,


Monday, July 28, 2008

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.

Thursday, July 24, 2008

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.)

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.

Monday, July 21, 2008

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.

Monday, July 14, 2008

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.

Thursday, July 10, 2008

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.

Tuesday, July 8, 2008

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.

Wednesday, July 2, 2008

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.

Tuesday, July 1, 2008

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!!