Thursday 29 March 2012

The Things That Scar

It still hasn't left me, that time in the neonatal unit. It's nearly 3 years on now, and it's interesting how much that time has impacted on me personally.

Occasionally, not all the time, I still see Joseph as that vulnerable little baby, and a wave of fear washes over me. Last night Joseph was very upset going to bed, because I've been on nights and he is waking up and I'm not there, when I am there he wants me with him all the time, especially at night. He finally settled. When I went to bed at 10 I had a panic as I couldn't hear him breathe so had to go check. Although he's a big boy now, it still hasn't left me, those little worries. It pains me that maybe he felt abandoned when he was tiny. I wasn't there for him all the time.

Now the weather is nicer Joseph is starting to wear cropped pants and t-shirts. I still worry about the scars. They are not major ones, just from iv lines, but they are quite raised and noticeable. Sometimes people ask me if he's been bitten by insects. I never really know what to say. Whether to say "I don't know", to explain, to just shrug it off. I don't want him to be hung up by them. Strangely enough the one I was worried about, from his hernia surgery, has been so well done that its invisible!

On one of my blogger forums this week there has been a discussion about whether we would allow non-formal milk sharing, or allow our baby to nurse on someone else. Quite rightly, most of the mothers have said no, nursing is too intimate. That caught me, that I lost all that intimate new born time because of Joseph's prematurity, and I'll never have that. I had to share him with nurses and doctors. To me that leap to have allowed him to nurse from someone else seems a very short one.

That old sadness is haunting me again. Close friends have had babies recently, and it hurts, all over again. Of course I share their joy, and I wouldn't want what happened to us to happen to anyone else. I wouldn't want my dear friends to have a premature baby just so I would have more in common with them.

However its my old grief, and more than that, that I wanted better for Joseph, a better start, with me and with his dad nearby all the time, safe in the closeness and intimacy of our family.

No wonder I still get separation anxiety when I leave him. It brings it all back. I find it hard to enjoy time away from him.

Sometimes I wonder if it would be helpful to have another baby, whether it would help erase some of that stuff and replace it with something new. But then what if it happened again?

Lately a lot of people have asked me when we are having another and are shocked when I say no more babies. I don't think people realise just how scary it is having a premature baby, and just how much it hurts to see what happens to them. They aren't just put into a baby nursery and left to grow, there's so much active medical treatment, and so much risk to the baby of complications, of things going wrong.

And its good, that I still remember, that I can still feel the hurt and the pain and the fear.

And I still feel very much the joy, of having a baby, of watching him grow, of developing a bond. What happened to us happens to so many families around the world, the way we care for these families, support the mothers, the fathers, the siblings and the babies needs to improve.

At times I feel lost, neglected, that I need a blog to read or a hand to hold.

It still hasn't left me.


  1. I know exactly how you feel kylie. Marcus has so many scars and I always get people asking about them. I am so scared about him going to school and not coping. I think a lot of preemie mind will relate so much to this post. I would love another baby, but I am so scared of it happening again.

  2. Michellethemonica29 March 2012 at 08:36

    Im so glad im not alowne in theese feelings, just in the last 3 months these feeling of not being able to protect my elder son (born 26 weeks early due to PM and HELLP) have reseviced with an insident at school, my son has now been but in the Child in need program, The school dont seem to understand mt feelings so when i took in some info in a file i "accedently" left a picture of my son at 24 hours old with all the help he had vent lines etc, know i think kind of the have a tiny understanding they never will unless the go throw it themselves. As always a good artical

  3. Samantha Wallace29 March 2012 at 13:43

    What a great post, so personal. I agree with almost all of it, I still hate being away from Gemma although she is nearly 2. I need to be away with work for 3 nights in May and am dreading it.

    If you haven't been through it I think it is difficult for people to understand why you won't have another baby. Its not that you don't want one (it aches that I will never have a newborn baby of my own to cuddle straight away) but you can't risk the same happening. I don't think it would be fair on Gemma, a new baby or our relationship and we need to learn to deal with that. Answering peoples questions about it is not easy especially as all they see is a cheeky wee toddler who is "fine now"!

    Gemma has her scar from her stoma and it is hidden most of the time and I tend to forget about it until someone mentions it if I am changing her nappy etc. Luckily most of her IV line scars are just small white dots.

  4. charlotte.cheshire29 March 2012 at 18:44

    As you know Kylie, I really can relate to this. Even though Adam was not premature, the fact that a perfectly healthy pregnancy was followed by a Group B Strep with Meningitis infection, weeks in neonatal and so many losses doesn't go away. That's why I still blog, sure it's partially to update friends and family on how things are going with Adam, but it's also therapy. There are many losses in my mind because of my experience, I desperately wanted (and intended) to breastfeed Adam but he was at first too ill and then simply unable to learn how - his entire experience had been "I'm hungry...oh, now I'm full" as milk was poured down his feeding tube. It was a struggle for him to learn to feed from a bottle, never mind the harder work to feed from my breast. I didn't have the "innocent" bonding time, just sitting watching an incubator and waiting to know if he would live or die.

    I would love to have another child, but despite the precautions that I know would be taken, I'm terrified of repeating the experience - even just having another child in neonatal for monitoring even if they were healthy would be so hard. The memory doesn't go away and the fear stays for a long time, but as you said to me (wisely) earlier this week when I wrote a similar post, with time the pain gets slightly less, it becomes possible to cope and eventually the times of joy start to outweigh the painful memories. It never goes away but hopefully, becomes more manageable. Keep on loving Joseph and keep him as safe as you are able and he will be a very fortunate boy.


  5. Thank you for your reply. I think now it's weird. I'm not sure what it's like for you but in Josephs first 18 months the pain and the trauma were there all the time, and that was kinda manageable, because I'd wake up and know I'd feel awful.

    Now nearly 3 years on I am fine most of the time and then it blindsides me, and I feel sad, guilty and jealous all over again!

    I just want to be better now! But I guess trauma isn't like that, it becomes part of that.

    Thank you again, I am so glad you dropped by.

  6. Thanks for your thoughts Samantha. I feel bad even mentioning the scars, Joseph managed to avoid stoma surgery, and the scars left after that can be quite big. People can be thoughtless too.

    The decision not to have more is a hard one, but in our case it was very much a joint one, we just could not do that again, and I have an 80% chance of recurrence. I'm getting used to the idea. I'd only have another if someone could guarantee me a fat termie!

    It never ceases to amaze me how people cannot empathise. I know that its hard to appreciate if you've never had a premature or sick baby, but surely people can see how hard it is.

  7. Oh Michelle I am sorry you are still having problems. Are people that stupid? I guess maybe they are. I think its important that everyone has an understanding of where our babies have come from and what they have gone through. Good for you leaving the picture for them.

  8. Don't feel bad mentioning the scars. You don't want your wee one standing out and being labelled,it is hard work explaining to strangers - until her NG tube went last month I was always explaining. Just saying she was born early and had trouble feeding was sometimes not enough for randoms on the bus....
    No more children was a joint choice for us,the consultant said she would hope to get me to 30 weeks and no chance of a termie. I don't think hubby has that same ache about not
    having another baby although I am positive I couldn't do it again.

  9. Daisy is head to toe in scars I wish could take them all away, I found a huge one the otherday on her ankle a one I hav enever noticed before, I often wonder when I will have found them all. The other thing I often think about and say to our family who think all it should all be forgotten about is although I have no physical scars the emotional ones run very deep and I wonder how long it takes these to fade.... Its three years in August but I still cry hysterically watching the perfect water birth on OBEM. Time will tell. Excellent blog though it was like reading my own mind xxxx

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