Life as I know it...

So, here I am, settling down in TN, and today was really rough. I had to partially unpack Jonathan's things, and at one point I ended up balling in "my room" by myself. My husband of course knew something was wrong, and I cried again. Today, I cried because my daughter will be an only sibling because we have decided for now to not try again. I am on board with this decision, but as a mother my heart aches. Another mother can understand this. I know father's do too, but in a different way. My therapist told me not to keep stuff in boxes, and that she rather have me give it away (in my own time of course) than keep it in storage. I am building my courage to that. I have so many really wonderful things that I imagined when I bought them, that would go to subsequent children. I am keeping some for the wonderful babies I will eventually love to invite into my home.

Today, I went to our insurance company and they said we had two dependants. I had to tell the woman that our son had passed. It is days like today that remind me how fresh and real my pain is.

On a positive note, my husband and I are closer than ever, and he even sent me a dozen roses today. I was ready to tell the world to go "somewhere" and he brightened my day. I am reminded everyday the blessings my son delivered to my family. I prayed everyday for a miracle... I received something I didn't expect...

Love to all that support me still...

XOXO

Time Marches On...

It has been more than 8 weeks since my angel earned his wings. I guess/think I am doing okay. I think about my son everyday, many times a day, sometimes with such joy, sometimes with saddness, and sometimes with a feeling of injustice. I know that is normal. Although I still sometimes feel as if my life is surreal, I also know that I am getting one day closer everyday to what my form of acceptance will be. Right now I don't know that I will ever truly accept what happened only because of the injustice of it all. I know that I will come to terms with what "my plan" is from God, but right now still a bit angry. I may have mentioned before that a friend told me blogging could be very theraputic. I would have to agree. My son will be remembered forever, and this is one outlet for me to use to disuss one of the most important people in my life.

Positive Things in my life:

We are in the middle of moving... that part is not pleasant, but I am so excited!! We are building a house in Clarksville, TN and I will FINALLY have all of my possessions in one house. It has only been 3 years... I am very excited to start something new and have many things to look forward to. Our home will be 1800 sq. ft, my dog finally gets a backyard, and we will have enough room to have many friends and family come and visit. One thing I know for sure is how much I depend on my friends and family. With out them, I would be lost, and I am so very blessed.

My husband and I are happier in our marriage than we have ever been, and I know this is due to Jonathan. I was not granted the gift of life of my son, but I was granted the gift of communication and appriciation with my husband. I was granted the gift of priorities and more love from my support system than I thought imaginable. So many people have done so many very incredible things for us, and I am more grateful than ever to have "my people".

I will check in again soon. It is all a process, and I thank anyone and everyone for reading this...

All my love...

Life is never as one would expect, especially that of a mother that loses a child. I still don't know which way is up, but I am hoping as time progresses I will learn to except that feeling. I am not sure at what point, if ever, if it will go away so to speak. I have surrounded myself with those I love in the past several weeks and to those people I am grateful. I am reminded everyday how blessed I really am, but I am trying to learn how to deal with the empty place that is in my heart. I do know that there are good moments and bad, but I try to stay balanced in the fact that I do not allow myself to get so wrapped up in my sadness that I lose focus of what is really important. I understand that at this point I don't have to know what the future holds, but I do know that I am looking forward to tomorrow and what it will bring. Everyday is a challenge, but one that as I face it, it seems to be something in which I can accomplish. A plan such as this is not one in which is to be understood, but I stand in my faith that it is a plan in which in mine. I look upon my life and I try to at least comprehend that my life has been laid before me in order to prepare me for my current suffering. I know that the future will hold great things for me and my family and that today is one more day closer to feeling a sense of peace I hope. I know my son is in an amazing place and I also know that his impact on others is greater than what some accomplish in an entire lifetime. I can only hope to be so great and honor not only him but those in his situation.

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.

5 weeks to go...

So I am new to this blogging bit, but thought it would be a good way to keep everyone posted in one place. I know that as the weeks progress, and after Jonathan is born, keeping this updated for everyone will be enough of a challenge.

When we were 12 weeks pregnant, our son, Jonathan Louis Moehl was diagnosed with CDH. (Congenital Diaphragmatic Hernia). This can be a life threatening birth defect where the diaghragm does not form properly; a hole is present and in Jonathan's case the left hand side. Therefore, his heart is in the right side of his chest, stomach next, bowl, gallbladder and liver are all present according to the MRI. The ECHO of his heart looks good, but the rest is not good. The best LHR (lung-to-head ratio) that he has had has been around .9. Again, not a good indication.
5 weeks from Wednesday is the tentative date for our baby boy to be born through the procedure of EXIT to ECMO. This is like a c-section, a bit more invasive, and the doctors seem to be optomistic that this will give Jonathan the best chance at a "jump start" to get his little lungs working. The ECMO is like a lung/heart bypass machine that will give his lungs a break from the start. Pulminary hypertension is the real problem with CDH babies.

I am scared for our son, as well as for my family. My husband and daughter are my world, and I am scared as to what this will mean for all of us, but I am trying to stay hopeful and in the understanding that God will lead us. We have prayed like crazy for the last 21 weeks, and I am trying to keep my chin up. The last 5 weeks will be very trying physically (due to the fact that I feel huge ;) ) and emotionally. There is so much that can not be answered until Jonathan is here, and I keep reminding myself that no matter what happens, Jonathan is a gift. The not knowing is very difficult, and because of the prognosis, it is hard to plan. My son does not have much in the fashion of a normal birth. When we were pregnant with our daughter, she had everything one could think of. My son has maybe 5 outfits but I have been unable to do much more. I almost feel that it is better to wait, and when he needs things, it will be like a victory then. I have tried to take the victories that we have had through this journey and celebrate them when they are here and not take anything for granted, but be humbled and thankful for what I am given at that moment; i.e. normal amnio, normal ECHO after ECHO... I am exhausted most of the time. I am so tired of going to the doctor, but I try and remain a trooper. I have an amazing support system, family, husband and daughter, and I know that I could not be more blessed in that aspect. I have read several other families blogs of children born with CDH, and I always walk away feeling better in the fact that I know that I am not alone. I hope this blog can help others in the same manner. I want my family to stay posted, but I also want other parents to know that what they are going through is "normal" and it is hard, and some days are just better than others. We all just have to keep fighting for our babies.