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,
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.