When Stephen and I found out in May that Jacob would most likely not survive we prepared as best we could. We met with a group of people at the hospital that help form birth plans for babies who are not expected to live. We thought we had everything covered but there was something large that we did not plan for and it is causing a lot of regret. We were told Jacob would either survive or that he would die shortly after birth. We were never told to plan for him living a few days and ultimately having to decide when to take him off the ventilator and have him pass away. We were not prepared for that and it has left me with a lot of guilt and regret. We never discussed having to take him off a ventilator until an hour before we did it. Everything went down hill so quickly we really did not have time to think about things, ask questions or plan. It has left me wondering if we did the right thing. We are pretty sure he was gone before we did it, that when we took him off it was just his body left and it was slowly shutting down. But it has left a lot of "what if's". I guess once we read the medical report it may clear up some of the questions we have about the last few hours/minutes and if we did the right thing. No parent should ever have to decide when to take their child off life support. I know I never could so I am thankful Stephen was able to. It really was peaceful after we took him off, he was with mommy and daddy in his last few minutes and I know he knew who we were and that we loved him. I am very thankful he did not struggle or gasp, he just peacefully laid in our arms before meeting Ty. It still does not make anything easier, of course we wish we never had to decide. We wish we still had to go to the NICU everyday to see him and that we'd be getting closer to bringing him home. But instead we sit and wonder, we feel guilt, anger and regret....again.
There was a part in my book last night that brought this all up. It was about having to make life and death decisions, it was a chapter I thankfully did not have to read after loosing Ty as we had no decisions to make in regards to his life. I hadn't read it before and it really brought up a lot of questions. It made me wonder if Jacob ever suffered, if he ever felt pain. I sure hope he didn't, we didn't want that and I would like to believe with all of the medicine they gave him that he never really was uncomfortable, he surely never showed it. He always looked like he was at peace, like he was just resting and trying to get better, until the end when we could tell he was gone. I have so many questions, I really hope get some answered soon, I need to get on with my grief and in order for that to happen I need some answers.
We have had no cable for a week now, can't say I really miss it. We've still been able to watch the few shows we like because they are online and in fact we have had more time together because now we do other things. I really think no cable is the way to go. We don't sit mindlessly for hours watching brainless crap, it's nice! We do have movie nights but other then that our TV is more of a decoration now. Going through situations in life really makes your views change. I thought I would never be able to live without cable but being at the hospital and not having it there made us decide to get rid of it at home because it really is not important. There is so much more to life then sitting and being couch potatoes. The occasional show is okay but to have it on hours at a time is just not worth it. Family time is much more valuable then any TV show.
The remembering the children's service for the hospital today was....okay. It was very awkward for me because we were the only ones with infant loss. Everyone else seemed to know each other from Children's Hospital and it made me very uncomfortable. Even worse, they were all talking about memories of their children and it made me realize even more just how much we missed out on with the boys. We didn't get any time with Ty and only two days with Jacob and all these other people had memories of their children for years. This is the same reason I do not like going to Mother's group. All their children are older and it hurts to hear them talk about their memories because we didn't even get that. Given, there are a few of us with infant loss but the majority are older losses and yes the loss of a child no matter what age is hard but for us who loose children as babies, please don't forget that we don't have memories, or we have very very few. Most of our children never made it to the holidays, some of them never even took a breathe. So it is very hard for us to hear about years of memories. But we went to respect Ty and that is what we did. After an hour of crying we left, got Chinese take out and went and sat with the boys at their graves and ate. We stayed about an hour and I started to envision how I want to decorate the children's garden they have. It is very pathetic looking and needs a lot of love so that is one of my goals for this fall and next spring, to make the children's garden beautiful for all of the children buried there.
Another thing I have learned, though it's more of a feeling, is true love. Sure I have loved people all my life and said it many times but how many of us really feel it, within the depths of our souls? I mean truly felt love for someone. There are many different kinds of love for each person in my life. The way I love Stephen is different from the way I love my parents and my brother, different from the way I love our cats, different from the way we love our friends but no matter what kind of love it is, I really really feel it now and it is an amazing feeling. So many people have come through for us the last year and we have gained so much more love and it can be a very over powering emotion. I am so thankful I get to have that in my life. We are surrounded by love and for that we are truly blessed. It is such a great feeling, I am in love with being in love and the love I have grows everyday. Now if that love could get rid of the guilt and frustration I'd be set....