Tuesday, 31 January 2012

With You Not By Me - A Post for #dosomethingyummy

Yummy Mummy Week is a fundraising campaign run by CLIC Sargent, the children's cancer charity. It takes place from the 10th - 18th March. The lovely Nickie at I am Typecast is hosting a series of writing prompts, and I am very pleased to be joining in. Last year I attended my first ever blogging conference, Cybermummy, and Nickie read this post , intensely personal, it was the absolute highlight of the day, and fair to say, not a dry eye in the house. I have chosen the prompt imagine your child can't be home with you. This is based on Joseph's time in NICU
 

Hastily grabbing a pot of freshly expressed milk, I start my short trip down the stairs to the neo natal unit. I am stopped by one of the grandmothers, here supporting her newly delivered daughter.

"Good morning, how's little Joseph getting on today?", she asked kindly. "Well thanks, not much change, I am going home today". Her face changed, she looked at me, shocked. "What? You can't go home, you have to stay here, with your baby, or take him home with you. You can't possibly leave him here all on his own." Tears welling in my eyes, I hastily explained that there are no facilities for parents to stay and this is what is expected. "Well that is just cruel, you should not be leaving your baby here, with strangers".

I carry on and walk into the unit, gazing at my baby lying in his little box, oblivious to my presence. I drop my milk in the fridge, and proceed back to my room, packing away the pyjamas, clothes, and cards that I have amassed in my week long stay. My husband arrives and takes me home.

The next day, I get up early, express again, put the milk in my cool bag, and pop into town on the way to the hospital. I need a changing bag. I go to our local bag shop and look at the bags. The owner, not known for his stunning interpersonal skills, approaches.

"Oh you don't want one of them, that's a changing bag, you know, for a baby". I smile "yes I need a changing bag now, I've had a baby". He looks at me wide eyed, incredulous. "What? You? When?", through gritted teeth I reply "last Friday, he's just over a week old". I divert my attention to the bags, checking every detail, looking at the stitching, the little dogs on the front, the price, thinking to myself "just go away, go away go away", he says it, I know it's coming "so why isn't he here then, where is he?" I explain. He tells me I am a bad mother. I should be with him. Every minute. I buy a bag (I really shouldn't have done) and I leave.

I go to the unit, I sit by my son's incubator and I try, very hard, to swallow the tears that are welling in my eyes. I quietly open the porthole door and stroke his foot. I talk to him, I sing to him, and then I leave. Without my baby. Alone.

Every day I make the journey to the hospital. Usually alone, splitting the visits with my husband so that Joseph has me there in the morning, and Corey there at night. Every day I smile, I put on a brave face. "How's Joseph today?" people ask me, "oh just fine", I say. Yes I know what people are thinking. "If he's fine why is he in hospital?". It is so hard to explain, the need to grow, to be protected, for medication, for tube feeding. It sounds so dramatic, so acute, but it isn't. It's normal. Our new normal.

For 76 days, my baby is not with me. I go home alone. My husband and I tiptoe around each other. We are tired, we are drained, we are parents, yet we are not parents. We go out for meals, we go out for Sunday lunch, trying to have some normality and some company. We are driving each other insane.

We see people out with their babies. One day, whilst out shopping for our baby sling and toys, we sit and have a meal, there's a mum and dad cooing over a baby. We smile, as my milk leaks into my breast pads. "How old is he", my husband asks "Oh he's six weeks, born on the 8th May", they grin, proudly. "Oh same day as our son", my husband says. You can see these parents gazing at us, looking around. There is no baby.

Quickly I explain "He's in hospital, he was born at 27 weeks", then realising we now look even more daft, sitting eating Sunday lunch, talking about our baby, who is not here, when we should be there with him. They look uncomfortable, they finish their meal and they hot tail it out of there.

Walking around with a hole in your heart, a great gaping gap in your family, it's hard. "What to Expect When Your Expecting" doesn't talk about this. There is no chapter "How to Behave When Your Baby is Not By Your Side", and maybe there should be.

There are whole communities of parents who know how it feels, to have a baby but not a baby. And there are communities of parents facing much, much worse. And we think of them, and we support them, and we raise money so that we can do something to help these special parents, and these special kids. It is all we can do.




23 comments:

  1. Hi Kylie
    I have been following your blog for some time and find it truly inspiring. My daughter was born at 34 weeks and your thoughts and comments have really helped me deal with a lot of emotions that I have kept locked away for 5years. It really helps to know all of these emotions, especially the ones you have just mentioned are normal for those of Us who didn't bring their beautiful baby home.

    Keep blogging!
    Kelly x

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  2. It's hard to describe the complete heartache of not having ur baby home with u. Leaving the hospital when I was discharged with my "it's a boy!" baloon, blue teddy, single blue fabric flower and no baby was excruciating but the following 5 months of having to leave him brings me to tears even thinking about it now 14.5 months on. I hated being at hospital because it meant our boy was sick and I hated being at home because he wasn't there. The comments from friends that we would bump into in the supermarket (proof that while I wanted everything to stop, life indeed went on) such as "wait till u get him home, that's when the really hard work starts!" would reduce me to a angry blubbering wreck. How folk can imagine that having a baby in NICU could in some way be easier than what u sign up for when u become pregnant, having ur healthy, newborn baby at home is not just stupid but also cruel as it implies we should "make the most" (another fab comment) of having others care for our baby when just getting thru the day is a struggle and the thought of using the hospital as a babysitting service is just rediculous as any enjoyment was non excistant untill he came home.

    What a wonderful piece of writting Kylie x

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  3. Ohh Kylie, I have no idea but that just touched me so much. I am so glad you took this experience and decided to help others, you are a real inspiration with all your work you do to help parents of prem babies. Mich x

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  4. Thank you so much. Those comments are so hard to take aren't they? Nothing is harder than having a sick baby in intensive care, I don't think. No amount of endless feeding, reflux, changing clothes, nappies etc would ever be more difficult to me than those months away from him, and I am sure you feel exactly the same. I felt like my life was on hold until we got Joseph home.

    It's funny with the "babysitting". I found that my husband and I could say that, and make light of it - our sort of trench humour I guess, but anyone else, it was insulting and upsetting.

    Thank you so much for reading x

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  5. My son is now 5 and life limited due to very complex medical conditions. He was born at 28weeks and spent 9 whole months in NICU. I still get upset thinking about those times, and I think I always will.....

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  6. im strugling to hold back tears here kylie :( my poor mum bless her :( as she had to do most of the journeys and visits alone as dad was working :( youve opened my eyes mate :( :) :) xxx ((((hugs))))

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  7. I still get upset thinking about it too.8 and a half months before gemma came home and each night was awful. My heart still aches and pulls thinking about it.
    I have just gone back to work part time and feel the same leaving her which I know is silly since she will be 2 in May!
    I think we will always get upset remembering the times however much your logical brain says "but look at her now".
    We are like you Kylie and won't have more as can't bear the thought of putting ourselves,gemma and another child through that. We might not be so lucky next time. People who have not been through what we have can't understand that.

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  8. I still get upset thinking about it too.8 and a half months before gemma came home and each night was awful. My heart still aches and pulls thinking about it.
    I have just gone back to work part time and feel the same leaving her which I know is silly since she will be 2 in May!
    I think we will always get upset remembering the times however much your logical brain says "but look at her now".
    We are like you Kylie and won't have more as can't bear the thought of putting ourselves,gemma and another child through that. We might not be so lucky next time. People who have not been through what we have can't understand that.

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  9. 76 days must have been so difficult for you. i have a Joseph too and i hope yours grows up to be a strapping lad like mine!

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  10. Hi Kelly

    I am glad you've found it helpful, I think a lot of times we're shell shocked and don't have time to process those emotions. And it is completely normal x

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  11. I hate complaining about my 76 days, 9 months is such a long time, especially knowing that once you are discharged, you will be it, doctor, nurse dietician, therapist etc. I have a dear friend who spent 13 months in NICU and once they got home, their house was basically turned into a hospital. Thank you very much for reading.

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  12. Bless her, I really feel for women like your mum. We have blogs and networks like Bliss, she must have felt so lonely and isolated.

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  13. I think the night times are the worst aren't they? I know I barely slept, and I used to ring mum in the middle of the night (she's in Australia) or friends. I hated not being with him at night. It's not silly, I think it brings it all back, even though we know that they are fine now and in good hands!
    I get so annoyed when people ask when number 2 is coming and then feel the need to tell me that I won't get pre eclampsia again, and everything will be fine and blah blah blah. Unless the pregnancy fairy comes along and guarantees a 37 week PE free pregnancy, then we're not going again!

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  14. Thank you so much Paula, he is looking great at the moment, so I am sure he will. The 76 days was tough, and so many mums go through it, and some much longer.

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  15. I've read this twice now and everything I want to say seems so inadequate. When we left Rachel at the hospital I had that pang of guilt every single time but I needed the break. I was physically drained and had to be literally dragged out of the ward. I was convinced she was screaming for hours but the nurses took loads of photographs for me to prove that she was fine plus, just as I had spent time with other children on the ward when their parents took a break, those parents chatted to my daughter too. The support was amazing.

    I really wish people weren't so shocked or judgmental and thought what they would do in your situation. You know you did the right thing. There was nothing achieved by being there 24 hours a day, 7 days a week.

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  16. Thankyou so much for sharing Kylie. I can't begin to imagine what that time must have been like for you but I appreciate the insight you have given me. Thanks so much for supporting the #dosomethingyummy campaign.

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  17. Thanks Nickie, I think its sort of good that in NICU the doctors and nurses do expect you to take time out, no one "on the inside" expects you to be there 24/7. An older child knows you are there, has needs that need to be filled by a parent, grandparent or close friend, but a baby in a box......

    I think for most people, they think of a baby as a big bouncy thing that needs snuggles and cuddles, these premature babies are so very different. It's just a different world.

    Thank you for reading and looking forward to the next prompt.

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  18. Thank you for reading Nicola. I am just so glad its all behind us now!

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  19. You're right. There should be a chapter about this. I am sat here in tears reading this, thank you so much for sharing. Big hugs lovely XxX

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  20. Thank you, it's so much more common than people would have us believe, I just with it was more "normal" and that's why I keep blogging!

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