Dear NICU,
I am angry. So angry. I know I shouldn't be but there are so many things I want to say to you. Maybe it's not healthy nearly 2 years on but I need to get this off my chest.
You denied me my role of motherhood. You took away my basic rights as a parent. You can SAY I'm still the mum, but how was I really being a mum just sitting? Sitting and staring. Watching and waiting. That's not parenting.
Do you know how demeaning it is to ask for permission to touch my baby? Not even hold, but touch? And when told, albeit gently, no not now, no not today, how you snapped my fragile heart and stamped over it before brushing it aside for dead.
How patronising and sad it is to have cuddles put on a rota, as if it was another chore to tick off. 15 minutes a day; 3pm after cares.
How I felt as small as a gnat, no smaller, as worthless as a flea because I wasn't breastfeeding. I couldn't even do that and you didn't care. You didn't even say, don't worry because it wasn't important as long as my child grew.
You smashed every one of my dreams and preconceptions of my first child, my baby I will never ever recover or now live. My innocence was lost within hours. It doesn't matter if I go on to have another baby; I will never get those hours back with her.
You were rubbish at sharing. All those weeks and I could only visit. Every night I had to leave. Every night I had to leave my baby with someone else. Someone very kind and very skilled but a stranger. Every night I had to accept that someone else would comfort my baby because I couldn't be there to do it, and might get to hold her precious hands while I wasn't allowed.
You had the most important job in the world looking after tiny vulnerable beings that were each the centre of someone's universe and yet you had no compassion. Day in day out some babies would get sick. Worse, some might leave this earth. Why didn't you do something? Something more?
You weren't me. You might have cared for my baby but you will never love her and you took her from me when she needed love the most.
Kind regards,
but maybe not that kind,
Mouse
ps. By the way, thanks for y'know, saving my baby's life and looking after her. Thanks for giving her the chance to live so we could both be happy today. More than happy. Um. Maybe you could just ignore all of the above?
*screws letter up and throws it in the bin*
Sigh.
I LOVE THIS POST!! am so using it to educate our local unit on parent led care. Could it have been different at your unit too? (and yes..i know...they were great, saved her life..eternal gratitude and all that) But what would it have been like if they had taught you how to read your babies cues so YOU COULD DECIDE when to take your baby out for a cuddle? what would it have been like if they had expected(not offered) you to aspirate and feed your own baby? would that have made you feel like you had the control?Like you were the Mum? i know it would have me and i think writing like this illustrates how nurses need to learn more about DOING LESS.
ReplyDeletejolly good post x
Yes to all of the above! I know they are under immense pressures and the staff rotate so quickly, but I wish so much I had been able to get more involved. In my experience, on the first few days all the parents were terrified out of their wits by the experience so were happy to watch the nurses do more. The trouble was, then it was really hard to negotiate doing anything. I suspect I could have been doing cares since at least day 2, rather than nearly a week because no one thought to ask me if I was interested in doing them. I remember being given a shedload of Bliss info about containment holding....but could I get near enough to bloody containment hold?! No!! It's not (exactly) a criticism, but it still haunts me and I think it always will, how little I did for her in the early days because to me, they still count. She was definitely 4+ weeks old at least if not more, before it dawned on me that when someone was distracted I could just sneak my hand into the incubator without begging for permission. I think it's really important to practise as much family lead care as is medically possible, when it is agreeable for the family and staff. This is why staffing cuts anger me a lot: because by stretching the limits to the max, it is the parents who suffer because no one can spare ten minutes to supervise something precious. x
DeleteGreat post.we got to do quite a lot from around 2 days old and were encouraged to do as much as possible. Could hold her hand whenever we wanted.
ReplyDeleteFirst set of cares was scary and took a long time for us to be brave enough to turn gemma over. A brilliant male nurse refused to turn her one day as she was ours and we should do it! Encouragement a little time is the best thing they can do. Of course,other than the save her life stuff we are eternally grateful for!
I would come in and move her after a while as young nurses didn't stop the monkey.always wanting to face the right! A fantastic experienced nurse had explained how important it was and how to wedge her with blankets etc.
X
this post is brilliant, it made me sob because it's so true and so sad x
ReplyDeleteI hope you feel better for writing this. I know the NICU saved Wriggles' life and that you are grateful fo that, but it doesn't negate the other stuff. I think in some ways this letter is for NICU as a place you don't want to have to be in, not THE NICU where you were.
ReplyDeleteYou have 100% hit the nail on the head. And yes, I do feel better. Onwards with entertaining the small now-toddler!
DeleteI will never forget the time when Adam was starting to grow stronger from the GBS infection and he had been moved to the nursery aka departure lounge. I had been discharged from hospital and, like you, endured the agony of walking away from hospital leaving my son behind to be cared for by others. But every day, I arrived as early as I could and sat beside his incubator all day. I had a nursing cushion and, as he was strong enough to be held and by that point I knew how to manage the wires (and refused to ask for permission!) I used to lift him out of that horrible little plastic box to sleep on the cushion on my lap. He slept deeply and restfully with me and clearly was not having his sleep interrupted in any way. One of the young nurses came into the room and told me it was time to put Adam back into the box "so he could rest" ignoring the fact that he was fast asleep. I replied that I would in a moment and pointed out that he was asleep. She said he would rest better in his own bed! No actually, that is NOT his own bed - it's a plastic box. And if you honestly think he will rest better on his own in a plastic box than in the arms of his mother, you are an idiot! ::breathe Charlotte breathe:: It still irritates me even now.
ReplyDeleteI understand why! That was what really hurt me: the assumption that plastic boxes were the best place! I think in reality my NICU wasn't too horrendous at family centered care, or at least once we got towards going home time in the nursery room they were better at getting you involved. But the bit at the beginning I felt like such a spare part, and that is the bit that in my head really really mattered. It's not their fault, or a particular failing but just a very unfortunate situation and I do appreciate that a higher level of staffing might have been different.
DeleteOh how I remember that feeling. My NICU were rather better than this, but even so, i remember it very well (and my Amy is 20 this week). With my head I understood where they were coming from, but oh with my heart .........
ReplyDeleteI think that's just it, the heart! I'm sure my NICU were better than I have made them sound, but it is so emotive that your emotions quite carry you away from rationale and reason. I know why everything was done as it was, but it doesn't stop me feeling a little bitter and hurt that I feel like I missed out on weeks of being at the least, maybe more involved. Maybe I should have pushed more then and been more outspoken or persistant, but it is such a funny place that your normal reactions are very off kielter.
DeleteHappy birthday fellow-Amy!
Oh I am so sorry for your experience :-( The Boy was born late and I had a horrendous time back on the ward with cold-nosed and heartless nurses and midwives. They seem to forget that we are humans and that these are our precious little bundles. I would have hoped they would be better on a NICU ward and this is shocking. Have you had any counselling?
ReplyDeleteThank you and yes I have. Written down it does sound shocking, but actually they were in reality pretty good at letting us get involved. I think the harsh reality is that being on such a ward is just an enormous shock to the system and is so far removed from what you ever expect. Every rule put in place was done so with the babies' best intentions, as over handling could be a potentially dangerous stimulus and they were very fragile, it just is very at odds with your maternal instincts! I think as a mother, particularly a (young) first time mother, you keep expecting things to become quite rose-tinted and when it doesn't, even with good reason, it seems very shocking and/or cruel. But at the end of the day, they saved her life and kept her well looked after and safe longer than either my body could, or I would have been able to as lacked the medical expertise or machinery! x
DeleteWe all understand the issues around staffing (I just wrote something in reply on the FB group as well) but a little bit of kindness would go a long way. It would not take too long for them to gently explain that they've got ventilated triplets coming in and that right now is impossible, we would all understand and say "quick! you go nurse and I'll catch you later!" It's the lack of communication and empathy and sometimes, yes, being made to feel that we are in the way. The amount of times I was told that I didn't need to be on the unit all day every day. Of course I bloody well did, that's where my baby was.
ReplyDeleteStudies show that containment, kangaroo care and the continued presence of the mother correlates with stable oxygen levels and body temperature. If our baby is being denied the contact then they are not getting the best care. And that makes me angry too...