Owen's story

I feel like it's June again and I can't stop replaying my days in the NICU over and over again in my mind. I am right back there in that place. I feel like I was more afraid before he was born than after he was born. Of course it was terrifying seeing him hooked up to all of those machines, and it hurt my soul to know he had to be on so many drugs, but he was amazing everyone, and I was more proud of him than I was scared. When they delivered him he threw his arms into the air and let out a small cry. For those of you who don't know, most CDH babies don't make a sound when they are born because they cannot breathe. I just knew this meant he was going to fight this. I didn't get to witness this event because I had to be out for his delivery, but I think he was trying to give them a story to tell me. I cried up up until the point they put me under, because I thought... when I wake up he could be gone and I will never have seen him... but he fought for me... he made it so that I could meet him and know him.

They doctors told me that his delivery "went better than they could have ever imagined"... we were so proud. The stayed stable for two days.... they told us they thought he had an infection, which meant they weren't going to be able to do his repair surgery... but I just knew they were wrong. They told me when I went into preterm labor that I had an infection, and that they would have to deliver him that night. They were wrong then, too... and I kept him safe inside of me for 4 more weeks... again.. pride for both of us, I just knew that we were going to show them. He didn't have an infection, and they did his surgery two days after he was born. It was very dangerous because his liver was in his chest, and the liver has a tendency to bleed during and after surgery, and he was on heart and lung bypass, so his blood couldn't clot. Again, they said the same words to me....the surgery went better than they ever could have imagined... no bleeding, and the hole wasn't as big as they thought it would be. I have never felt so proud of anyone in my entire life as I did for my son at that time. I knew the road was long... but the only life-threatening hurdle we had left was getting him off of the bypass machine. They told us he was doing great... that he wasn't out of the woods, but he was fighting. He looked so good... if he wasn't hooked up to the machines you wouldn't even had known he was sick... he was pink and beautiful. And it gave us a false sense of hope. I was thinking.. maybe he could tell them to take their tiny percentages and their statistics of survival and stick it. My baby was going to show them all and I was going to take him home. They even let me change his diaper... twice! I am so thankful now that I have that memory to hold onto. Everyone kept telling me how great I was doing after having a c-section, but they didn't understand that whatever I had to endure didn't matter. He was the only thing that mattered.

Lucas wrote him a special song the day that everything went all wrong, and my heart still breaks into tiny pieces when I think of that and us knowing that we were going to have to say goodbye. On his 5th day of life, I walked into his room, and I knew that things were different. Every other day when I walked in I felt hope when I looked at him and saw my beautiful son. This day... I looked at him and I knew it was going to be a bad day. The doctor kept telling me all of the things I saw were "run of the mill" for ECMO babies. His hands and feet were completely purple with bruises.... all the way past his wrists. He looked like he was in pain and was requiring more medication. They told us this day that they believed he was having seizures. Seeing your child have seizures when you can't hold him or comfort him... that is one of the worst feelings I have ever experienced in my life. They had to hook him up to a brain scan machine which consisted of what looks like hundreds of wires. We couldn't hardly fit in the room with all of the machinery. They confirmed that he was having seizures and ordered a head ultrasound.

This ultrasound revealed our worst fear. Owen developed a bleed in his brain from the ECMO. We knew this was a risk of the ECMO, but we had no option other than to utilize this potentially life saving piece of equipment or to let him go right after birth. The bleed was a stage one, and they said that it could possibly stay that size and not cause him any real problems. I never believed that this would be the case. I knew that he was done fighting and that it was just too much. They said if the bleed progressed we would have to talk about what to do then. A stage 4 bleed would mean irrevocable brain damage. They did another head ultrasound that evening which showed it had progressed to a level 3 bleed. We elected to take Owen off of the bypass machine as soon as possible, and to see if his little lungs could survive on just a ventilator without the use of the bypass. They told us there was very very little chance that he would survive because his lungs just weren't ready yet.

I was swearing quite a bit in the hallway of the NICU so they put us in a private room. We had agreed long before his birth that we were not interested in doing things "to" Owen in order to keep him alive... only things "for" Owen. At this point it was very clear that he was letting us know he was done fighting. We told the doctors to give it everything they had with the ventilator, but that it was time to stop the ECMO. We had the hospital chaplain come and baptize him and pray for our miracle. They weaned him off of the ECMO and turning up the ventilator throughout the night as Lucas and I "slept" in his room. I just kept staring at the machines willing his oxygen sats to go up... I wanted my miracle... I wanted God to appear in that room and fix all of it.

The next morning they told us the ventilators weren't doing enough, and we were going to have to say goodbye. I finally got to hold my son when I was telling him goodbye and I hate that. I hate that we have no happy mother and son cuddling moments. We each got to hold him while he was still on the ventilator, and our families got to come and and tell him goodbye. He continued to have small seizures even with the medication and it was breaking my heart. He was so sedated to keep him out of pain that he did not open his eyes during this time, and I hate that too. I wanted to know that he knew it was me holding him, but I will have to hope that he knew my voice. In the end it was just Lucas and Owen and me. We held him together and told them we were ready. I held him close and told him that I loved him and that he wouldn't be in anymore pain. I told him not to worry about us and that he didn't have to struggle and fight anymore, and that we would be ok. I talked and talked to him. I wanted to make it easy for him to let go. He fought so hard and I understand now that he did that for us. He knew that we needed him for that time. I did not cry until they told me he was gone.

We stayed with him for quite a while and had photos taken by a wonderful photographer from a non-profit who specializes in these situations. She was compassionate and wonderful and has given us the things I now hold most dear which are his beautiful photos. They told us we could stay as long as we wanted while they did his foot prints and keepsakes. But I think we both knew he wasn't there anymore. We had to get away from this place where we had lost him. We kissed him again and walked out of the NICU. That was the last time I saw Owen.

We elected not to have a viewing before his funeral. I needed to remember him as the warm, soft, sweet smelling baby that he was and I wanted that to be the last picture I had of him in my mind. I do not regret our decision and I hope that it stays that way.

We went home to our big empty house with an empty nursery. I hate that he never got to come home. I want to say that I hate everything about this story.... but how can I? I got 6 precious days with the most amazing person I have ever had the honor of knowing. Not even that, I got to be his mom. I hate the ending to this story. I hate that he's not here with me and that we didn't get to show them all. I hate that they were right. But I love Owen. I love everything he was and is and I love that he fought to be with us. This is his story, and I just needed to tell it in its entirety. This is not the end. I will make sure of that, he will live on and he will not be forgotten. We will ensure that other children are helped because of Owen's life and his strength and bravery. The name Owen means "Young Warrior". We did not know this when we chose his name, but it is the most perfect name for him that there could ever be. He was a warrior, and now he's his mommy's perfect angel. I love you.