July 19, 2008

I know I promised an update several days ago and I've tried so hard to give you one. I've started so many pages but have not been able to finish without melting into tears. Even now as I am typing tears are rolling down my face... It's so difficult to do this. In a few weeks my son will be born and I will know joy and also pain unlike anything I've ever experienced in my life before.

So many of you have written the most beautiful emails to us letting us know you are there and we are so grateful. Each email and comment we read help to lift our spirits knowing we have so many people who care about us. Thank you so much for your messages of hope and love. And thank you so much for your prayers. Today, I am asking that you pray for me...my courage and my strength are fading and all I can think about is how terrified I am to face what is before me.

Last month was tough to get through...we've had so much bad news. I guess at some point, I think I've just become numb to any kind of feeling...

We started the beginning of July pretty optimistically. The last 2 doctors appointments in June went very smoothly...no issues and Christian continued to progress normally.

In fact, because our son seemed to be doing so well, Ryan and I decided to schedule another appointment with the pediatric cardiologist to discuss possible surgical options for Christian's heart. Our initial appointment with him was cancelled by our regular doctor shortly after finding out our baby had Trisomy 18. Incompatible with Life. It's the proverbial brick wall we slammed in to back in April. In light of Christian's development though, we decided not to let T18 deter us from seeking out a second opinion regarding Christian's heart and we requested another meeting with the cardiologist. Certainly, we understand there is no getting around the medical diagnosis of T18. It's fatal...we get that. BUT, as parents, we wanted to be able to explore every possible option available to us to help Christian. We wanted to see if there could be anything done to help prolong his life. Our appointment was scheduled for July 7th.

The first thing we had done was a detailed echo cardiogram on Christian's heart to verify the original diagnosis of Tetrology of Fallot. What we learned is that Christian's heart has a Ventricular Septal Defect (VSD) instead. Apparently, this is a common type of defect in babies who have genetic defects. More importantly, we were told that the hole was very large and would probably not close by the time he was born. Currently, Christian's heart is functioning at about 85 percent capacity. It was hard to fight back the tears as the doctor went through the results of the EKG but we were still hopeful that he would tell us Christian's heart could be fixed with surgery. Unfortunately, that was not the case. After a brief moment, he turned from the ultrasound monitor and told us that because of the size of the hole, Christian was not a candidate for surgery. He would not survive it.

I just stared at him completely dumbfounded by what he said. I didn't understand it at all. This doctor was one of the leading pediatric cardiologists in the country and he just told Ryan and me that he couldn't help us. It hurt to breathe and my face felt flush from my efforts to hold back the flood of tears which threatened to come at any moment. With as much composure as I could muster, I asked the doctor how long Christian could survive without having surgery and he told us that it would only be a couple of weeks to a couple of months at most.

We knew that the prospect of Christian having a normal life would not be possible with T18. But the pain we felt knowing we had no options available to us to help him is almost too much to bear. Christian now has two strikes against him and he isn't even born yet. But my son is such a fighter! Even now, as I am typing away, he movements are strong in my belly. He is always letting me know that he's there and reminding me to not give up on him. I love him so much!

The following week, we had another ultrasound to check his development and to make sure that no additional problems could be seen. Already, the weight of our recent news was affecting mine and Ryan's moods. We'd been pretty down all week ....just struggling to get through the days. It's weird (or maybe not so) how being sad makes you so tired. All I wanted to do is sleep and forget about everything around me. Unfortunately, I couldn't even do that. It doesn't seem fair that my life is falling apart and the world seems to continue to function with or without me being a part of it. Our commitment to our son is the only thing that drives me to get out of bed each day. I don't want to have regrets at the end of this journey. I owe that to my son.

Anyway, I went to this latest ultrasound by myself because Ryan was scheduled to work on shift at the fire station and couldn't get the time off. It didn't bother me too much because I thought this appointment would be another routine exam. Since the previous ultrasound appointments had gone pretty well considering, I felt confident this would no different. Plus, Ryan assured me that he would pop in if the fire truck was in the area.

One thing I noticed right away is that the ultrasound images weren't as clear as the ones we were used to. Christian looked pretty cramped in my belly and it was hard to make out the images on the screen. I was told this was normal as I progressed in my third trimester. As the technician took the routine measurements, she told me that he was currently 2 weeks behind in his development. At 32 weeks he was measuring just 30 weeks. More bad news and I was alone to receive it. Not a good place to be considering I had done a poor job of handling the information the cardiologist shared with us only a week before. Fortunately for me, Ryan walked in shortly afterwards and helped to comfort me. He is so great like that. He got to spend about 10 minutes with me and Christian before being called away on another emergency call. But it helped me to collect myself enough to get through the appointment.

After the ultrasound, I had a lengthy visit with my doctor about the results of the EKG from the week before and the ultrasound we'd just completed. She spent a lot of time with me discussing our wishes for Christian and asking questions Ryan and I had not yet considered in our pregnancy. We've been so focused on Christian's birthday and all the things we wanted to do with our son that we've had very few conversations about making final preparations for him. I left the doctor's office feeling very sick.

That's the way I've been feeling for the last few weeks. Just sick to my stomach. I've asked myself a million times why this is happening to us and how will I ever get through it. Ryan and I have wanted children for so long...we've prayed about it..we've done everything we possibly could do to have our own children...and now we have to plan the funeral of the precious child we've waited to patiently for. It just doesn't seem fair.

This week I have two doctor's appointments... Aug. 6th and 8th. We'll know more about Christian's developments and our next step on Friday. I pray that the doctors will tell me he is well enough to go to term. It is so critical at this point for his lungs to be as fully developed as possible because my son's heart is having to work harder to compensate for the VSD. He just needs a fighting chance. Ryan and I are still hopeful for a birthday. I want my son to hear his mom and dad tell him how much we love him and how we couldn't wait to meet him.

My dear friends...to all of you who have taken the time to write to me and pray for us...thank you again for everything. Thank you for walking with us in our journey. To know that my son matters to each of you is most humbling and so overwhelming. We are forever grateful.

Love, Leah

Catching up...

Like Ryan said, it's been awhile since our last post...and I apologize for that. I also apologize for not responding to the many emails we've received offering support and encouragement. It's not that we don't appreciate people reaching out to us... it's just that I don't know what to say. I'm sad. I can't think ....and most days I just want to crawl in my bed and hide from the world. Perhaps in doing so, maybe this hell we're living in will go away...but, unfortunately, it's not the case. I'm going through the motions of everyday living. It's tough and I'm struggling with so many emotions right now. I hope you will all understand why I've been so quiet.

As Ryan alluded to in his earlier post, we haven't been getting a lot of positive news from our doctors these past few weeks... The despair is mounting and I'm running out of things to hang my hopes on. In the past, it was very easy to be upbeat and strong...even optimistic about our situation. I guess it's always easier when you have good news to feed your energy. But now, the weight of mine and Ryan's decision to stand by our son is hitting us full force. There are simply no words to describe the pain and fear we are feeling these days. Yes, I'm scared. I'm scared to death of what is to come. I want to be strong for my son and my husband. I want so many things...but mostly, I want more time...I need more time. I'm not ready to let go.

I've read other blogs from incredible mothers who have experienced or are experiencing what I am going through and I am amazed by their strength to endure something so devastating as the loss of a child... but they are surviving! I don't know how they do it... I don't know how I'm going to cope. I admire them so much...several have reached out to me. I love you all for doing so and I'm sorry for not responding in kind... I feel like such a coward because you seem so much stronger than I am. And I'm scared... I hope you will all understand.

Today, this is all I can manage... I promise to give you an update in the next couple of days. I've been meaning to...really. But I have no words right now. A friend suggested that I write a few words to let you know I'm still here and to please not give up on us. Please pray for us... for strength, for courage, and for Christian. We love our son so very much.



July 17, 2008

Tough Times

It has been awhile, but things have been moving kind of slow. It is a lot of "Let's wait until the next ultra sound." The wait and see is how we have been living. It's tough, an emotional mess. I'm trying to stay strong and focus on the every day needs and on the future, but have had my moments of deep sadness. You see, our boy is not doing well. We have some tough decisions and arrangements to make in the next few days. I'll let Leah explain in her words what the doctors have told us. She is a much better writer than I.

I just never thought I would be making funeral arrangements for my son before he was even born. My heart hurts every time I think of losing him, but I smile when I think of the joy I'll have when I can hold him, if only for a moment. We have chosen a tough road to travel by not giving up on him, but the memories are our rewards. God bless our son and everyone that is praying for him.