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, November 17, 2008
Wednesday, August 27, 2008
The Morgan family will be notified of all donations and will respond with appreciation cards.
Friday, August 22, 2008
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.
Wednesday, August 20, 2008
Tuesday, August 19, 2008
Monday, August 18, 2008
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. ;-)
Sunday, August 17, 2008
Thursday, August 14, 2008
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
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
Tuesday, August 5, 2008
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
Monday, July 28, 2008
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
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.
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
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 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
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.
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
Thursday, July 10, 2008
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
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
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
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!!
Wednesday, June 25, 2008
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.
Friday, June 20, 2008
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.