Sunday, May 9, 2010

Happy Mother's Day to me.

Yep, it's that Hallmark inspired, somewhat contrived, but still monumentally painful holiday for all of us bereaved mommies out there. Mother's Day.

I got a bouquet of pinky-white roses and a nice card from Brian (& Aidan), and a gift certificate for the movie theatres from my own mother.

I wish my boy was still here though...I was suppose to be 26 weeks pregnant today. This was the week we were aiming to get to in order to have an MRI to see if Aidan's lungs had developed at all. It was also the week I was going to consider hospitalizing myself if an emergency C-section would have helped Aidan's chances. I keep thinking of life that way: "suppose" to vs. "not suppose" to. I'm suppose to be x weeks pregnant, I'm suppose to be decorating a nursery, I'm suppose to still be working and looking forward to maternity leave. I'm not suppose to be able to fit into these jeans, I'm not suppose to be planning our summer vacation with only Brian and myself in mind, I'm not suppose to be this sad. It's hard to get over that. It's so hard not to imagine the rest of our future in terms of suppose to vs. not suppose to. Aidan is suppose to be here...he's not suppose to be dead.

On a totally different note however, this week in our city's paper there was an entire section dedicated to the children's hospital where I work. They do it every year around Mother's Day/Nurse's Week. It probably helps to draw big donors, and it provides convenient heartwarming/uplifting/never-say-die stories for journalists to write about. Plus the photo ops are WAY cute.

In the section it had two stories that interested me/really bothered me. The first one was about triplets who were born at 25 1/2 weeks gestation (2 weeks more than Aidan) and are now 2 1/2 years old. All three of them have significant cerebral palsy and require intensive therapy. These children were featured with their parents who expressed how much these children are loved and how much they have invested into taking care of them, and how happy they are to have them alive. All three children are described as likely to need wheelchairs, two of them haven't started to speak (likely because they can't hear), and all are described as 'not having much control over their bodies'.

The second story that affected me I had a more personal interest in. It was about a little boy I took care of in our NICU, who was also born very prematurely. He is almost 11 months old now and has never left hospital. He had a number of problems resulting from his prematurity that caused his liver to shut down. He ended up needing and getting a liver transplant just before I went off on sick leave in January. His mother wrote in the paper how she tells people who are amazed at her son's continual ability to recover from near death episodes by saying "he must know how much he has to live for".

Of course, both of these stories made me think of us and Aidan. How, with a few more weeks of pregnancy we may have been in that situation. We may have had a child with special (and time consuming and expensive and heart wretching) needs that we would be responsible for the rest of our lives. We may have had a son whose day to day future was uncertain. We may have had to watch Aidan struggle and depend on medical technology to keep him alive, only to watch him 'code' multiple times or be faced with making the decision to 'stop' treatment.

I read these articles and while I wish, more than anything in my whole life, that we still had Aidan with us...I wouldn't bring him back if it meant he had to live like those children. As much as I want him back...I want him back with a future that has possibilities...not one that has him (and us) struggling so much. But it's also hard to watch these mothers and fathers, SO HAPPY that their children are alive, even with all their trials and tribulations. Am I missing I horrible mother to be 'glad' my son is dead, rather than suffering (but living) in a hospital, or confined to a body that will never do his bidding. I mean, don't get me wrong, the last 2 1/2 weeks since Aidan died have been the most painful of my life...but were they worse than watching my baby spend 11 months in hospital hooked up to machines? Were they worse than taking care of my wheel-chair bound child for the rest of my life? It makes me wonder why these parents are (or have) struggled so hard to keep their preemies alive. Death is awful...but I feel, if I had to watch Aidan struggle like that, it may have been worse.

The newspaper section was supposed to be very moving and positive...but I felt so sad reading it. I wrestled with this problem as an NICU nurse, but it was never on such a personal level. My nursing buddies and I would often talk about the children we felt were going to have a very rough time of it...children who we felt bad for continually 'saving' with medical technology. The children who we, as nurses, felt were 'better off' dead, whose existence was so filled with pain, infections, medical technology, procedures, and so very little hope. Perhaps that's what makes Aidan's passing easier to bear...we had so little hope that he would survive. From 17 weeks onwards we knew we were fighting a losing battle. Maybe if he'd made it to this week, born at a gestational age that had more 'hope' attached to it, it would have been harder to let him go. It's still hard of course...but I can be glad he didn't suffer. That was our gift to him.


  1. thank you so much for sharing these thoughts so honestly. my son was stillborn at 25wks on may 1 (my due date was only 3 days before yours). my water broke out of the blue and within minutes his cord prolapsed. that was it. a completely normal, healthy pregnancy with no issues whatsoever, and then this happened with no warning and suddenly my son was dead. i've thought so much about the fact that had things happened even a little bit differently, he might still be alive - but he would be in NICU. and i have wondered if i was horrible for being relieved we wouldn't have to go through that, that we would not have to raise a child with so many of the medical and developmental issues you have described here. it just kills me that i never got to look into his eyes, feel him grasp my finger, or feel him breathe against me as he slept on my shoulder. but in some ways i do think his death was better than the alternative - i just can't get over the guilt i feel whenever i think that.

  2. Don't ever feel guilty that you are glad to escape the NICU experience. It's not a nice one. Yes it can result in some miracles...but it can result in a lot of tradgedies and heart break too. And you'll never know which one you'll be until you are in it. It's a sucky situation all around. I guess that's what I was trying to say in my post. It sucks that my son died...but I kind of think it sucks too that their children live like that.

  3. Thanks for sharing those stories. I am new to your blog so trying to catch up on your story. My son had to be born prematurely at 25w+6 days when his heart stopped in fetal surgery on 1-3-11. The NICU team tried hard to get his hard going again but he never responded. I think all the time what is life would have been like if he would have came back and how many problems that would have caused him being born prematurely. But then I also think if it wasn't for his severe spina bifida we probably wouldn't have even had the surgery to correct and he might still be alive, but alive with the all of the problems that spina bifida brings with it.
    I just can't imagine that poor child being in the NICU for so long and what those parents must be feeling. It must be hard as a NICU nurse to see this. I am going to try and start volunterring in the NICU tomorrow and not sure how I'll do since recently losing my son and then seeing other babies struggling to live.