Reflections on our visit to the NICU

We went to visit the NICU on Saturday. It was great to see our nurses, respiratory therapists, and the neonatologist who was in charge the first 3 weeks of the kid's lives. The one who felt we hadn't exhausted all efforts with Edwin and that there was more we could do before we gave up.
It is strange to go back there. There are many mixed emotions. There were so many ups and downs there. There were also so many questions. What would the future hold for these 23 weekers? I know some of the medical team asked, "are we doing the right thing by continuing to treat these kids?" I know I asked myself that so many times...
I remember one day a specific nurse who was caring for Edwin. I always asked a lot of questions, especially when I felt people were hinting that ending support would be the best thing for him.
This nurse told me about a young couple who had twins born around 23-24 weeks who opted to end support for both children. Supposedly they then went on to finish college, got married, and went on to have a healthy full term baby. I couldn't help but wonder if she was hinting at something. Edwin and I were young, unmarried, and everyone knew I had been accepted to law school and was suppose to have gone but had deferred for a year because of the pregnancy. Edwin was trying to make the Olympic Team and had a really decent shot. I couldn't help but think, this women must really think life would be so much easier if we took these babies off life support and went on with life as planned...like the young college couple before us. Those words some spoke, "you can always go on to have more children. Most people go on to have full term babies..."
I know this nurse wasn't trying to be judgmental or hurtful and was probably helping me understand my options, but I could not wrap my head around going on to live happily ever after if we made that choice. If we thought about ourselves and all WE had to lose.
There certainly was a time where I felt it was selfish to hold on. It was the time I gave Edwin permission to stop fighting if it was getting too hard...too painful. That was the most selfLESS thing I've ever done, and I do understand and grieve for parents who have to make decisions like that for their child.
I just felt that giving up solely because life was going to be damn hard with children who could potentially be severely disabled was not a rationale for me. I was going to accept Serena and Edwin however they came because that is what I feel a parent should do. I never wanted children because I needed them to be something I imagined. I wanted children to love and nurture them. Sure, life would have looked "easier" if I had gone onto law school and Edwin focused on his sport without parenting two children with needs; but at what cost? A cost way to precious to pay in my opinion.
I look at Serena and Edwin and every decision we made was clearly the right one. They have their issues, but in no way would those issues justify not giving them a chance at life. I hope to see Edwin walk one day, independently of his walker, but even if he doesn't, his life is worth so much. It will never change how I feel about resuscitation and continuing to treat.
There are no easy answers and I know we are extremely lucky that S&E are as healthy as they are. I know there are families struggling with children who are severely disabled and feel maybe there is too much suffering in their child's life. I feel deeply for these families. It is truly too large an ethical dilemma for me to wrap my head around.
All I can do is hope that families going through what we went through know that there are families out here who have happy, thriving, loving children who have parents who honor, cherish, and love them unconditionally. I know I was searching for these families two years ago and it was because of them that I was able to make it through the difficult statistics and stories that were thrown our way. It was the nurses who helped keep us positive, who told of the kids who were so sick and came back running down the NICU halls that got us through the rough days. It was the stories I read on these blogs and the pictures and videos of all the amazing former preemies and their families that helped us visualize what we had to look forward to. It was these people who helped me believe that everything was going to be okay, even if okay didn't mean "typical." And boy were you right!
So after our visit, I hope the nurses and the NICU team remember Serena and Edwin, once tiny 23 weekers whose prognosis was so uncertain. I hope you keep them banked in your memories so the next time a family comes in as scared, uncertain, and in search of hope as we were, you can tell them about the joy we get to feel every day because of our children. I hope you tell them that a disability does not define a person and that there is so much children can overcome. I hope they know that this doesn't have to be the end of their life as they hoped for, but rather it's life taking another turn that can be even more amazing than imagined. And I hope you'll refer new parents to this site via my email so that we can provide some glimmer of hope to others. That just maybe Serena and Edwin's smiles can bring a little light into their lives during the frightening NICU time.
For some of those smiles please refer to previous post :)