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.