June 11, 2008

The last 3 months have been extremely difficult. Not only have we been attempting to deal with our own pain, but that of our kids, and managing friends/family at the same time. There are so many people that want to know the answers to why Nate died? and how are we doing? We thought that it would be easier to just put it in writing so that people would understand what we're going through. We realize that this is a lengthy read, but we're hoping that it will give you some insight into our lives at the moment.

While we were at CHLA, we tried to keep our email updates positive--but those 3 weeks were excruciating. After an 18 hour, 98% natural labor, Trisha ran a marathon trying to save Nathan's life. She spent 16-19 hours everyday sitting on an uncomfortable office chair next to Nathan, caressing his head (because he had tubes everywhere else) and telling him how much she loved him. Those hours were extremely stressful--starring at his monitors and as alarms went off throughout the day & night, and holding her breath as the doctors and nurses adjusted medications and machine settings to keep him alive. The staff worked around the clock caring for him. The (Cardio Thoracic Intensive Care Unit) CTICU was insane. There were critically ill babies all around recovering from open heart surgery. Alarms and bells went off around the clock--Nathan was extremely fragile. It was so difficult to be in the CTICU that most parents only visited their sick babies for about an hour a day. The doctors encouraged Trisha to leave and rest since she just delivered a baby but she couldn't. She cried every time she left to pump milk, eat, or sleep a few hours. She was his mom and wanted to be with him. We had so many ups and downs and our emotions were raw.

Trisha and I have been seeking the help of a grief counselor. Because of what we went through, he told us that our bond with Nathan was much more than that of a typical parent & newborn baby. It's really hard to put this experience into words. We toured the CTICU and met with the doctors before we delivered but the experience was 10 times worse than we could have ever imagined. We hated being there but couldn't leave. 3 times a week, Erik would leave the hospital at 5am to drive home and get the kids. He would make the commute back to LA so that we could spend a few hours with them and then drive them back home, tuck them into bed, and drive back to the hospital once again. Trisha was exhausted from living in the ICU but Erik was equally tired from trying to stretch himself between the hospital and the kids at home. We were so happy when he was well enough to be transferred to CHOC and we thought that this nightmare would be over soon.

What happened on March 30th?

The day started off great. The ICU doctors did rounds that morning and all said that Nate looked great. All of his tubes were out with the exception of a one for his antibiotics. The cardiologist told us that his heart was functioning well and they were making plans to send him home within a day or two. The only thing that they were concerned about were his feedings. They told us that he needed to maintain full feedings in order to be released. Erik brought the kids up at about 10:30 that morning. Trisha met them in the hall and asked Erik to take the kids to the playroom for a while so that Nate could focus on his 11am feeding. When we were in Los Angeles, the kids weren't allowed to stay in his room for more than a few minutes, but at CHOC, we were able to spend time together as a family and the kids got lots of time to love on their brother. Because of that, his room was noisy at times and he sometimes got distracted eating. So, Erik and the kids went off to the playroom.

At 11am Trisha started giving Nate his bottle. He ate 1/2 of it really well and she sat him up to burp. As she did, Nathan began to struggle and his monitors started beeping. The nurse came in to see if everything was okay and within seconds, Nate turned blue from head to toe. She grabbed him out of Trisha's arms and pushed the CODE BLUE button. Within a minute, a dozen nurses, doctors and respiratory specialists were at his bedside. It was extremely chaotic. Trisha called Erik and told him that Nate was CODE BLUE and he needed to get up here. He left the kids with hospital volunteers and hurried upstairs. Together, we sat down in the back corner of the room and started praying. We asked God to let him live and begged him not to take him. The room became louder and more chaotic as the time went on. The doctors performed CPR and intubated him (breathing tube) and he came back --but his heart rate was sporadic and he was obviously in peril. As they did an echocardiogram, Nate was looking around the room and we were talking to him. We told him how much we loved him and we told him that he was going to be okay. The results of the echocardiogram were not good. They detected something--which they suspected was a large blood clot and before we were given an explanation doctors started yelling for a cut down tray. It was exactly like the traumas that we've seen on ER, only this was our kid and it was real. We were briefly told that they did not have time to get to the operating room and they handed us masks with instructions to put them on. Then, right in front of us they began operating on our baby boy. The hospital chaplain came in and sat with us. She repeatedly insisted that we call someone to start a prayer chain. Most everyone we knew was in church at the time so we just left a handful of messages. We kept thinking that any moment they were going to say that everything was fine. He was perfectly healthy just a few moments ago.

During the next hour, they frantically tried to save him. We kept hearing them call out for "more epy" and "more blood." His body temperature was too low so they were microwaving saline and trying to warm him up. We kept praying and pleading with God. There were glimpses of hope when the surgeon would say that they had a heartbeat but that was diminished when someone else would say he's losing too much blood. At 1:10 that afternoon, the doctors all became very quiet. One of them stepped over to us and told us that they were going to stop working on him because he was gone. We pleaded for them to keep trying but they said that all of the CPR had popped his heart and there was no hope. Then a doctor told us that "they stopped." Those were the two worst words that we've ever heard and at that moment we knew that life would never be the same again. Our Nathan Ryan was gone. His heart was broken and now ours was. It took them a few minutes to put him back together and then we were able to hold him. We were holding him but he wasn't there. We had to beg the doctors to take his breathing tube out and they told us that they needed permission from the Coroner. So Erik actually had to talk on the phone to the Coroner and after an hour or so, they took it out. We held him and kissed him and cried.

But the worst wasn't over. We still had to tell the kids what happened. We went to an empty room down the hall and one by one, they brought the kids in. We are supposed to protect them and now we had to tell them that their baby brother had died. They all cried and cried. It was devastating to see our kids in that much pain and there was nothing that we could do. Friends took the kids back to the playroom so that we could say goodbye to Nathan. We held him again and we asked our Pastor to dedicate him to God. The whole day was so surreal. A few hours ago they said that we could go home and now our son was dead. And the worst part about it was that we watched him die and there was nothing that we could do.

How are we doing (Trisha)?

So many people want to know how we are doing and we don't know how to answer that. We are just trying to get through each day and minimize the effect this has on us and the kids. We started going to a grief counselor the first week and have joined a support group through Saddleback Church. We are making every attempt to get through this knowing that we will never get over this. We hate being miserable and though it doesn't seem possible at this point, look forward to a day when we can be happy again. We've been told that the first year will be the hardest, specifically the first six months.

One very hard part of this is the isolation. Because no one knows what to say to us, most people just stay away or pretend they don't see us when we're out. People think that they're doing us a favor by "giving us space" but it's really hard to be so alone. We know that it's hard for people to be our friends right now. We're not very fun to be around. We are doing normal things, like taking the kids to school and sports, but life is far from normal. I have moments of happiness and laughter but that is short lived with the memory of what happened constantly racing around in my mind. In fact, the empty hole in my heart makes it impossible for me to think of anything else for more than a few minutes.

Every time I leave my house, I get all worked up in anticipation of what people are going to say. Most people just ignore me but many others say "how's it going" with enthusiasm like nothing ever happened, and others seem to need confirmation that we're doing okay -- something that I can't give them. We've experienced a very traumatic event that was prefaced by 25 days of extreme insanity. We don't expect people to get the full nature of what we've been through which is why we are posting this blog. We need people to understand where we've been, and why we are not capable of being normal right now. In fact, we need to find a new normal because life is never going to be the same again. We need people to "get it" so that we can feel safe leaving our house and supported in our grief. We still don't know why Nathan died. We've had to speak with the Coroner a few times and have forwarded a copy of the autopsy report up to our doctors at CHLA. We hope to understand what happened but there is a possibility that we will never know.

Another thing that I struggle with is that there seems to be babies everywhere. I realize that there are an abundance of babies in Ladera Ranch, but it really seems like they follow me around. It's so painful to see someone holding their baby--I can't even begin to explain it. That's what I'm supposed to be doing right now and instead, my baby is six feet underground. That pain is so intense right now that I try as hard as I can to avoid being around babies. I hope that those of you that have little ones can understand and give me a little grace with this.

What we need

We are frequently asked what people can do to help. There's not a whole lot but here's a few things.

• Keep in contact. We do appreciate emails and phone messages. We may not return calls or emails but it is really comforting to know that people are still thinking about us. And, some days we appreciate an invitation to get together, we just don't know when or how often those days will come.

• Meals. I feel like it's ridiculous to ask for help with this but I still need it. I never realized how physical grief is. It sucks up a significant portion of our energy. Our counselor told us as much as 75% -which is why we feel so wiped out all the time. It's hard to take care of 4 kids right now and I just don't have much energy or desire to go to the grocery store or make dinner every day. So, we really appreciate it when someone takes the time to bring us a meal. Diane Hall at church is coordinating meals. If you want to contact her, her email is hall_diane@email.com.

• What to say. I know that people walk on eggshells around us not knowing what to say. I'm just as uncomfortable and I don't know what to say as well. But, it is hard to always feel so alone. I must admit that I hate it when people say "how's it going?" when we are out. I realize that's the standard conversation for our society but it puts me immediately into a high stress situation where I don't know what to say. I doubt that most people really want to know how crappy my day was and I'm not capable of saying the societal acceptable answer of "good". Instead, just say, "hi" or, "it's good to see you."
  

Thank you for taking the time to read this. Writing it was somewhat therapeutic and I'm really hoping that exposing myself will help in transitioning back to life.

How are we doing (Erik)?

I'm doing one day at a time. Some days are better than others. It's been 73 days, and I still cry every day. Many things seem to remind me of Nathan; every helicopter, baby boys, Noah, medical stuff on TV, hospital/doctor bills, and on and on. It's difficult, because I make it a point not to break down in front of the kids. It still doesn't seem real. How could something so sad and unfair actually have happened? The counseling is helpful--we are really trying to lean into the grief process in the healthiest way possible both for us and the kids. I have been back to work for some time, but am admittedly less capable than before I left. We are doing more "normal" stuff--mostly events & activities for the kids.

I am hopeful that in time, we will find a new "normal," and that it will be a happy "normal." We really do have a lot to be thankful for & I try to focus on treasuring every day that God gives me with my family.

We really appreciate your support and your prayers.