As I've travelled this journey as mum to premature baby, I've found it hard, at times to fit in, with baby groups, with parenting websites, just doing normal every day things, sometimes I find its hard to explain myself, and my point of view. To the outsider I'm just another mummy, with my son in a pushchair, doing mum things, but often life is different for the mum of a premature baby. Here are some of my thoughts.
1. We've seen and heard things other mums haven't. We have seen our babies go through horrible procedures, even simple things such as having a naso gastric tube, whilst a routine procedure from a neonatologist point of view, is a big thing for a mum to see and deal with. Having lines fitted, having numerous blood tests, each procedure tugs at our heart strings.
2. Often, we have been given news, bad news. And that bad news leaves an imprint on our hearts, even once our child is no longer at risk. As I've blogged about before, the words "we are not sure that your son is going to live" left me broken, and I've never quite recovered, and in fact, I feel a catch in my throat, and the tears sting when I see him standing up playing with his cars on the sofa. The little person who is such an enormous part of my life, with such a huge personality, nearly wasn't here, and I'm not sure how you recover from that.
3. We have instructions. On discharge we are told to be careful about mixing, not to allow our children to be passed around, to be very careful about colds and flu. We wash and sanitise our hands, and we require others to do the same. Are we paranoid? No, we are careful, and we require the same care in others. If we pull the raincover over the pram in glaring sunlight, or wear our babies in a sling close to us, it may be because that is the only way we can stop people touching our babies without following the rules. If your told by a parent to stop and wash your hands, don't take it personally, just do it.
4. We have our own sort of humour. Survivors of any sort of trauma or difficult situation sometimes have "trench humour", we're not trying to minimise what happened, its our way of coping, of trying to lighten what we have been through. Just because I joke about being able to eat brie in at 29 weeks pregnant does not mean I wanted a pregnancy in two trimesters, and I am not being frivolous. Sometimes, it helps to laugh.
5. We missed physical contact with our babies for weeks and months. We had to ask permission to touch and hold our babies. Yes we may hug a little tighter, we may be reluctant to give our babies to others, but be gentle with us, we have been through a lot. Unless you have ever had to ask permission to hold your baby, don't judge us.
6. We know a language that we share with doctors and nurses, and perhaps writers of medical programs. We pop words into sentences you may not understand. We're not doing it to be clever, or to alienate you, that is the language we know.
7. Every little achievement is a massive deal. Today I took pictures on the webcam of Joseph using a beaker. When he was 2 weeks old I was told he would never eat or drink, and would be tube fed for life. He used a beaker, no lid, no teat, just a normal beaker! And he can dip his turkey sandwich into his milk if he wants (I don't recommend it). To me, this is incredible.
Sometimes the world of term babies seems so alien to me, that it's easier just to associate with people who have walked in my shoes, and are now walking in my shoes. How I long to know what its like to have a baby that comes home with you, that doesn't have lines going in and wires coming out. I wouldn't change what I've been through, and the mummy I am now, and I sure as hell would not change my baby, but sometimes, I just wish I could have stepped in someone else's shoes.
1. We've seen and heard things other mums haven't. We have seen our babies go through horrible procedures, even simple things such as having a naso gastric tube, whilst a routine procedure from a neonatologist point of view, is a big thing for a mum to see and deal with. Having lines fitted, having numerous blood tests, each procedure tugs at our heart strings.
2. Often, we have been given news, bad news. And that bad news leaves an imprint on our hearts, even once our child is no longer at risk. As I've blogged about before, the words "we are not sure that your son is going to live" left me broken, and I've never quite recovered, and in fact, I feel a catch in my throat, and the tears sting when I see him standing up playing with his cars on the sofa. The little person who is such an enormous part of my life, with such a huge personality, nearly wasn't here, and I'm not sure how you recover from that.
3. We have instructions. On discharge we are told to be careful about mixing, not to allow our children to be passed around, to be very careful about colds and flu. We wash and sanitise our hands, and we require others to do the same. Are we paranoid? No, we are careful, and we require the same care in others. If we pull the raincover over the pram in glaring sunlight, or wear our babies in a sling close to us, it may be because that is the only way we can stop people touching our babies without following the rules. If your told by a parent to stop and wash your hands, don't take it personally, just do it.
4. We have our own sort of humour. Survivors of any sort of trauma or difficult situation sometimes have "trench humour", we're not trying to minimise what happened, its our way of coping, of trying to lighten what we have been through. Just because I joke about being able to eat brie in at 29 weeks pregnant does not mean I wanted a pregnancy in two trimesters, and I am not being frivolous. Sometimes, it helps to laugh.
5. We missed physical contact with our babies for weeks and months. We had to ask permission to touch and hold our babies. Yes we may hug a little tighter, we may be reluctant to give our babies to others, but be gentle with us, we have been through a lot. Unless you have ever had to ask permission to hold your baby, don't judge us.
6. We know a language that we share with doctors and nurses, and perhaps writers of medical programs. We pop words into sentences you may not understand. We're not doing it to be clever, or to alienate you, that is the language we know.
7. Every little achievement is a massive deal. Today I took pictures on the webcam of Joseph using a beaker. When he was 2 weeks old I was told he would never eat or drink, and would be tube fed for life. He used a beaker, no lid, no teat, just a normal beaker! And he can dip his turkey sandwich into his milk if he wants (I don't recommend it). To me, this is incredible.
Sometimes the world of term babies seems so alien to me, that it's easier just to associate with people who have walked in my shoes, and are now walking in my shoes. How I long to know what its like to have a baby that comes home with you, that doesn't have lines going in and wires coming out. I wouldn't change what I've been through, and the mummy I am now, and I sure as hell would not change my baby, but sometimes, I just wish I could have stepped in someone else's shoes.
You've made me cry. So true. So true, all of it. Xx
ReplyDeleteIm crying my eyes out hear, so so true, another excelent blog,
ReplyDeletethis is all so true, i too have tes in my eyes, its like the unwritten rules what every parent of a prem knows
ReplyDeleteNever a truer word spoken on each point, my little ones were not quite as prem as yours but even so I can relate. Mine are now 7 and 4 and I still stand staring at my eldest and think 'my god, we so nearly lost you more than once, and now look at you'.
ReplyDeleteThese prem babies go through more in their first few months of life, most of us don't go through in a lifetime and yet they just get on with it x
I tried to comment on this yesterday but it crashed out on me. As the other preemie mum's said - so so true, every point.
ReplyDeleteYesterday, after reading half the list I had to stop at the last sentence in point 5 and give my little girl a hug. It's true, I've never found anything so heartbreaking as being told that I wasn't allowed to hold her certain days when she'd been too unstable with her desats. x
Oh yes, Joseph was a great stealth brady and desatter, and cuddles were often banned, it was so hard to understand sometimes, and no one really explained it to me
ReplyDeleteWow. We had a hard time with our twins who were 3 weeks premature, but they & we had to go through nothing like this: really puts things into perspective. Great post: Love & Strength to you!
ReplyDeletePS: I found your blog through a link from "Welcome to the World Esther and William"
I'm not surprised this did so well. Brilliantly written, and so emotional. It makes it easier to understand things from your perspective. A must read!
ReplyDeleteA post that has words, thoughts and paragraphs all far too familiar to me. With 27 week twins I know more than most what it is like to walk in your shoes. 16 months on and I am still terrified when Esther and William get a cold. Now with a new baby on the way will be very strange if as we dream we are allowed to bring them straight home x
ReplyDeleteyou've made me have tears in my eyes. my poor mum :'( from an ex 24 weeker born in 1984 :( :)
ReplyDeleteAs I've just tweeted you to tell you, I found this incredibly difficult to read without stopping, coming out of the window in tears and then returning. You three have been through hell and you are amazing. He is amazing; what anabsolute miracle baby!
ReplyDeleteWhat a beautiful post x
ReplyDeleteOddly, because my first baby was a full month late, parts of this brought tears to my eyes with my own memories of a very traumatic birth. They kept me from my baby for a week due to infection. I suspect no one but another mother who has been denied access to her newborn could possibly ever understand. Thanks for sharing.
ReplyDeleteA very moving post. I don't know how you got through it, and obviously you live with the fact that your baby was premature every single day. But one thing that shines through for me in this post is how much you love your son, and you clearly have a very special bond. You may not have been able to hold him in your arms at first - but you held him in your heart from the start and that is very clear x
ReplyDeleteI had a prem too (actually 2) and it took years to get over them. xx
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Wow reading this as a mum who had a prem and 2 stillborn many of the feelings are the same BUT I
ReplyDeletehope I can 'recover' the main thing is my baby is here that's the best recovery I ever had x
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