Angel Wings

I had started a post last Thursday after visiting the doctor's due to the fact I knew something was going on. As most know it is because Jonathan was ready to make his entrance. Friday August 14th, 2009 my water broke. For a family that knows they will be losing their child upon that event, when it happened I was still in denial. We rushed to the hospital and the events started to unfold rather quickly. Greg was still in GA and I was scared that I would have our son and my husband was not going to be there. I had prayed to God like no other prayer to deliver us a miracle on the day my son was born. Although the miracle I thought I was asking for was for my son, God granted it to my husand and myself... Greg walked through the door, still in uniform 10 minutes before our Angel was brought into this world. The family, friends and staff at the hospital had been amazing, but seeing my husbands face put a whole new understanding of what this event meant for us.

Jonathan was delivered at 5:29, a head full of black hair, weighing in at 5 lbs 1 oz. He was perfect! He looked just like his daddy, long and skinny... long feet, toes, hands and fingers. The exact moment the doctor put him on my belly will forever be etched into my memory. My brave little warrior tried so desperatly to take a breath, but with no lungs to support his attempt. When he did try to take a breath I would just cuddle him close and tell it was okay and that mommy was right there. This too will forever be etched into my memory. When you fight so hard for your child while in the womb to have every chance, and then to have to not only decide that it is best to let him pass, and then watch as he slowly fades, it is an event no mother should have to endure.

Jonathan was surrounded by family that loved him so dearly during his very short stay. Everyone got a turn to hold and kiss him while he was here, and within the hour our angel had earned his wings. I knew that he was in heaven, and I told him that his Pappaw was there waiting to hold him. We had baptized Jonathan immediatly after birth, and I tried to comfort my son as any mother could while he faded from our world and into the next.

I had contacted a photographer from NILMDTS(Now I Lay Me Down To Sleep)- and organization that takes photos gratis for families like ours. It was one of the best decisions I have ever made. She was compassionate, respectful, just plain wonderful. She took the most amazing pictures of our son and gave us lasting memories for an event that took place in just a few short hours. I will forever cherish those photos and be forever grateful to an organization that provides such a wonderful service.

I wanted to update our blog in order to let everyone know that I am hanging in there. I suspect I will be updating this page as the weeks unfold more for a place to share how I am doing/feeling.
Again, I appricate so much the prayers and thoughts of so many... so many in which I didn't even know existed. Without you all, this journey would have been harder. Our love to you all.

I have been contemplating for the past week how to word this blog entry. I wish that I had different news to share, but unfortunately, my life and the decision we have had to make is one that is becoming more of a reality each day. After meeting with the amazing docs in Cincy, talking with my Priest, Counselor, Family and close friends, I am ready to say what is soon becoming my reality. After much soul searching, praying, crying and such, Greg and I have decided that after our son Jonathan is born we will be offering him comfort care until God takes him home. When reading this, I mostly feel numb; a feeling that I have come to know much of lately. I spoke with the coordinator in Cincy, and the team there understands our decision and back us due to the devastating conclusions of our MRI last week. Jonathan has only 10% lung volume, due to his heart, stomach, bowel, gallbladder and liver taking up his entire chest. This is an evaluation that has not changed since week 24. ( I am 35 weeks now.) Greg and I feel that no matter what life support machines or drugs are available, our son would suffer unnecessarily and we want our son to peacefully leave us as it seems it has been determined. CDH is not something that could have been prevented, it is not something that we did wrong, or that when this severe, it can not be fixed with any "normal" means.
I have started to make arrangements for his funeral and burial; something that is so unthinkable when you are pregnant with a child. It is so devastating to know that this is where we are headed after such a long journey, but somethings are our of our human hands. I know that God has a plan, and I am trying so very hard to faithfully accept our fate. I am very angry at this situation, and I have to take it one hour at a time every single day. I try and remember my blessings at a time when I can feel so very hopeless. I know that God gave me Samantha first for a reason, and her life is my sunshine.
As I continue on this journey I will continue to update this post to let people know how we are. This is such a real journey, and if nothing else, I want others to walk away after reading it knowing they are not alone when they are faced with decisions and situations out of their control.
There is an amazing organization that if interested, one can look into in order to learn more about CDH: www.cdhsupport.org. (CHERUBS) When the time comes for us to say goodbye to our angel, I am asking that instead of flowers, a donation be sent to this organization in order to assist other parents in their journey, research and the such. If only we knew more about this condition. Perhaps then we could have been approved for tracheal occlusion; a procedure that perhaps would have allowed Jonathan's lung to grow and keep some of the organs from herniating. CDH is a condition that affects so many families, and until my son was diagnosed, I didn't even know what it was. Now it has changed my life forever. I am so sad to have to write this, face this, live this. But, as I have said, I am trying to trust that the plan that is laid before me is so much bigger than my own understanding. The faith of understanding one day my suffering is one thing that keeps me going.

We appreciate our family and friends for their continued prayers, thoughts, and kind words. I know too well how in a time like this it is hard to find the right things to say, but know this: We appriciate you all so very much, and without you all it would be even more impossible to get through this. Our love to you all.

Today is not that day...

Today was the day that I spent the entire day at Children's in Cincy in order to repeat tests, and get a more conclusive answer about the severity of my son's condition. My husband and I are now facing the hardest decisions of our lives due to the conclusions of the tests, and right now I am only in a place where I can say that the findings are devestating. Very long and very complicated story short: My son barely has a right lung, and his left lung is non-existant. The percentages are practically not existant, and the risks are unbelievable. I am going to pray on this information and soul search unlike I have ever had to do before in order to come to terms with decisions that must be made. I ask that my friends and family only pray that God guides my family to a decision that will grant us all peace and allow for my son not to suffer. When I am ready, I will post more, but today is not that day.

The Progression of Things...

So, today was the day that I had to say goodbye to my daughter and send her with my husband back to GA. to stay while he is finishing his training. We did this because of the possibility of bed rest for me, a chance for Sam and Daddy to have some much needed one on one before the baby, and so I can have a chance to focus on myself. That is really a new concept for me. I try to take care of myself, but the idea of sending Sam was very hard for me, and although I have come to terms with our decision a bit more, it still is making my heart feel as though it might come out of my chest. My mom and I discuss about how this is the progression of things, and how we knew that this was coming, and now we are ready for the next portion; our son being born. It is funny in life how you know things are approaching, but you don't really want to think about them, and how hard they are going to be. I suppose that is why it is progression....

Our friends came with Greg to get Sam, the one's that they will be staying with, and I think it was a way for God to tell me to relax. Alex I have known, but his wife and children I had not. As I told my mom, I don't think I could have asked for anyone better to help me by watching Sam than Miriam. She truly is a blessing to me. I feel much more comfortable now that I have met her. The children all get along really well, and I know that Samantha will be loved and comforted during her portion of this long journey. I of course cried like crazy, but my angel just stroked my face telling me, "It will be okay, don't cry Mommy." Although she does not understand fully what "going to work with Daddy" means, she is so sweet and loving, and I know that I will come to appriciate her more than I do now. I keep telling myself this is all part of God's plan, and that everything is going to work out as it should. It always does.

So, thank God for our friends and family, with out them, I don't know where we would be. Now it is time for me to rest, and reflect upon the time that is so quickly approaching. The next leg of this marathon is in about 4 weeks. I should rest up... haha. I am going to the hospital tomorrow for my "Spa Day" where we will be repeating all of the tests; MRI, ECHO, Ultrasound and then a consultation once again, SO, I will let everyone know how that goes afterwards.