Our Little Fighter

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Told by: RaeAnne

My husband and I have been happily married since January 2009. When we first were married, we knew we wanted children, but also knew we wanted some time to focus on our marriage. So we waited until the summer of 2011 to start trying. It didn’t take long; we had a positive test early in September. We were overjoyed and immediately began preparing for our sweet little one. Yes, we knew miscarriage was a possibility, but we were not going to let fear steal our joy. Somewhere in my heart, I knew he would be a boy all along. Much to many of my friends dismay, I started buying all the adorable blue and brown things I would need to make his room in our home soon after learning he was there. By the time I was 11 weeks along, we already had amassed a large portion of the things he would need (and I still didn’t have proof he was a he). I just knew that no matter what happened, he would be a part of our hearts and home forever. Why wait?

And then, IT happened.

We went in for a routine ultrasound at 13 weeks just to say hello to our little guy. I will never forget that day for the rest of my life. As I laid there, with love in my heart and joy spread all over my face, watching our tiny, adorable little one bouncing around the screen, the doctor suddenly turned the screen away and said, “I’m seeing something disconcerting”. I think my entire world stopped turning. My husband grabbed my hand and we asked her for more information. There was not much more to be had that day. She noticed he was holding fluid in his tummy and wasn’t sure what that meant for us. She was going to send us to the Mayo Clinic in two weeks for more testing. Needless to say, those two weeks were excruciating. We were so worried for our little one and had no information about what on earth the problem was. Somehow, we made it to the appointment. As soon as the ultrasound began, I immediately lost it. I cried and cried for my little one. His belly was so filled with fluid, it has become almost 3 times larger than the rest of his body. Something was obviously horribly wrong. After a bit of composure, and a lot of explaining, we learned that our sweet little baby had a condition called Posterior Urethral Valves (PUV). It’s a blockage in his urinary tract that kept urine from passing from his kidneys/bladder, out into the amniotic sac as it should. Instead, it was collecting in his bladder (hence the large tummy). This condition is totally a fluke, they told us, and also fatal. Our baby would not live.

I can’t begin to describe how heartbroken we were in that moment. Devastated doesn’t begin to describe it. We were shocked, bewildered, and totally lost. Typically, we were told, families terminate a pregnancy at this point. We told them loud and clear, we would never, ever end this baby’s life. Instead, we would do whatever we could to prolong it and give him as much love as we could during his short life. We found out he was a boy and named him Samuel Evan. (Samuel for the biblical story. He was loved and wanted, but had to be given back to God. Evan means little fighter). His life was going to full of love, we decided right then and there. So that’s what we did. We gave him life and love for 5 more months. We took him places, we read to him, we sang to him and we shared our lives with him. Daddy would read to him every night before we went to bed. We begged God for his life, while doing our best to prepare for his death.

On April 14th, 2012, after a long week of labor, Samuel Evan, our beautiful baby boy, was born alive. The doctors has said he would never live so long, but he was a fighter! He lived for 4 hours. Due to a mess of hospital issues, he had to be transferred to another hospital for care. Since I had to have an emergency c-section, I was not able to be with him when he died. My husband, with a strength and love I’ll never forget, was right by his side. He held his hand as Samuel took his last breaths. He cuddled him, bathed him, dressed him and rocked with him for hours before saying goodbye and returning to me. He did what I wasn’t able to do and he did it amazingly. All I could do was watch him on the computer the nurse had set up with Skype. I cried my eyes out that I couldn’t hold him, or smell him or feel him close. But there was nothing we could do, so I did my best to be grateful that he got time with his daddy all to himself. Now, it’s been almost 9 months since he died. We are heartbroken and missing him deeply. We are trying to figure out where in the world to go from here. I struggle with lots of questions. Why us? How are we going to live without him? I look back and I am so very glad we chose to carry him. I would do it all over again if I had the option, because I got to meet him and see his sweet little face. I’ve started a group* for other families who are carrying to term after a fatal diagnosis because I want them to have the chance to say hello, even though goodbye will soon follow. It’s worth it.

 

If you would like to read the whole story, or get in contact with some important resources I’ve created regarding carrying to term your baby with a difficult diagnosis, I blog at Nothing Without You.

 

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