It was Kangaroo Care Awareness day a couple of days ago – and I missed it because I was ill in bed. The other day marked 2 years since Bryn died and I have filled facebook with his picture, which makes me smile. But I had an idea for a post about our experiences of kangaroo care and why it is important that a kangaroo care top is part of the NICU Memory Boxes.
Whilst doing my La Leche League Leader training I read the book form their library on Kangaroo Care. It was amazing looking at the pictures of the tiny babies snuggled up to their mums, dads, aunty or grandmoters chest. And the results were amazing, more babies surviving and growing strong.
Knowing Bryn was going to be in intensive care, albeit after a possible operation, I knew kangaroo care was going to be a priority. And I felt pretty confident that I had the knowledge and skills to be able to do it.
I packed a variety of slings to take with me, stretchy, woven wrap and rebozo and looked forward to the day I would be able to hold my baby close.
So it was with immense pleasure I found I could hold my baby the day he was born! Unbelievable, the omphalocele , that THING that had caused so many issues and so much stress through the pregnancy, that had resulted in me not having my home birth and being induced in a scary hospital, far from friends. Was not an omphalocele at all but a hernia that was fixed in the incubator with a bit of pressure and a couple of stitches. So riding high n all this I got to hold my baby. Bliss!
But minutes later, horror. Alarms went off, nurses came scurrying over and gently, but quickly removed him from his cosy nest. He had stopped breathing.
I don’t know if I can explain the guilt, the horror, the devastation, the utter, utter feeling of failure this left me with. It was just another thing on the list of ways I had failed my baby. I couldn’t skin to skin him. I wasn’t good enough.
Gradually though the reason became clear. He had low muscle tone and couldn’t hold himself up in an upright position. And probably best if I held him in a lying position and on a pillow from now on. Gutted. Bummed. I could feel the dunce hat being fitted on my head with the words FAILURE MUM written on it (of course not in reality but it was there in my mind)
And then another baby got an infection and we weren’t allowed our babies out for cuddles. It was kind of a relief for me that. To have an excuse not to hold him. I could touch him and rub him and sing to him. Gaze at him and get to know him. But I didn’t have to hold him. A reprieve.
So when we got to Ipswich and he was thrust into my hands after nearly dying in the ambulance I was shell shocked. I don’t want to hold him, quick put him in the incubator, attach the tubes and the monitors I am Failure Mum, I can’t perform the magic that other mums can all over the world. No not me.
But gradually I could, I got used to picking him up out of the incubator, juggling the wires. Trying to find a snug position, get him as close to my skin as possible. BUT DON’T HOLD HIM UPRIGHT was always at the forefront of my mind. He can’t do it (and nor can you whispered that critical voice)
So when it finally came to trying him out in a sling it was an odd carry to say the least. But hey he was in the sling, Midge trailing along after me with a hand held oxygen monitor and us tentatively walking up and down the short corridor and the almost relief of taking him out of the sling.
This was not how I had dreamed of it. And I should have known by then that dreams don’t come true and this was Bryn and he had brought a different story with him.
Once we got home though I spent a good week with him snuggled up to me both of us naked. I got covered in wee and poo and learnt a lot about his signals and cues. (that can be another blog post)
But I also gained back my confidence. At home taking my time. Thinking, being with him. And being able to work holding him in arms in an upright position he gradually strengthened up, relaxed and was able to be carried upright.
So what could have helped me have skin to skin earlier? I think straight away – a suitable top or item to help me hold him in place. The top I first wore was loose and baggy, it didn’t serve to hold him at all. If you look at the pictures of babies in skin to skin they are supported via a kanga or other material. Held gently but firmly in position so the mothers can even walk around (or fathers, or grandmothers or grandfather – any relative)
When I spoke to people about how they did it I often heard – any t-shirt or top. But As I could barely dress myself – in fact I wore my nighty for two weeks with a cardigan over the top and often had a nurse sidle up to me and whisper that I had this or that inside out. The last thing I could have done was fish around my wardrobe looking for a suitable top. And I don’t think I had anything – not that was loose enough to post baby down or then tight enough to support. And I certainly didn’t have the ability to go into town to try and buy something.
Next a suitable chair, something that had the ability to recline a bit to help a wee bit with positioning – I know not strictly necessary but would have helped – I think the chairs at Addenbrooks did recline but I didn’t have the strength of thought to work those out and maybe not enough support to try that rather than opt for a laid down hold.
Knowledge and experience– now this is tricky – I had the knowledge of how beneficial kangaroo care was, but not the experience of ways to go about it. The nurses had the knowledge and experience of handling little sick babies but not necessarily any knowledge of kangaroo care itself other than it was beneficial to hold a baby – there didn’t seem to be the knowledge of skin to skin rather than holding – or maybe they did but my fear was such that they didn’t push it. I certainly didn’t see any encouragement of skin to skin when I was on the ward. But a friend who had a prem baby a year or so before had successfully achieved regular skin to skin.
So the idea with the skin to skin tops in the NICU boxes is first of all to give access to the knowledge of skin to skin and its benefits. And a way to achieve this with a suitable item of clothing. Something simple to use but secure enough to hold a baby in an optimum position (airway not blocked, comfortable, easily accessible, easy to achieve with lots of wires and tubes attached) and easy for all caregivers to use.
For many reasons stretchy wraps are out, and a large piece of cloth like a rebozo or kanga has a high learning curve and is just not suitable for the stressed environment of NICU. I have looked at various different tops and talked to another Babywearing consultant friend who had her baby in NICU too. It’s hard to find the exact answer – we can see pros and cons of various different ones, and never come up with a ‘perfect’ design.
My two choices, so far, are an elasticated band type one that is secure enough but would mean baby would need to be lifted high and away from parent’s body to be placed in and out. This is a big stressor for a term baby and brings on startle reflex and I wonder how much of the benefits of skin to skin would be undone by this manoeuvre. This would also likely need to be sized for different parents – small, large or medium, so not so easy to decide which one to put in and gives a problem of trying to change to a different size if necessary.
The other is a two piece you have a triangular wrap that is used to tie around the baby so very reminiscent of the kanga and rebozo but a much smaller piece of material and then a short sleeve top to go on over the top that wraps round and keeps baby warm. I need to explore this one more – see some videos of it in action. The benefits I see is the baby can be laid straight on to the parents chest and secured by the cloth – the cloth is fairly large so less of an issue with sizing and as the top is wraparound it is more likely to fit different size people – also it is only secondary so instead of that top a parent can use a cardigan instead. Then the baby is unwrapped to be put back into the incubator so less chance of having the shock of being lifted out and away after being snuggled up so nicely.
I’d like to talk it all through with NICU nurses as well, hear their thoughts on them. Talk to parents and hear their thoughts.
What I am learning though is this is all a long, slow process, no rushing – it works in the time zone you find yourself in hospital, slow, laborious. It’ll get there. We’ll get there. Plenty of time no needs to rush.
I’d love to hear your thoughts and experiences though – each one of us has had different experiences and all thoughts are valuable, so do please feel free to share.
(Edit: I never did finish my La Leche League training – it just didn’t feel right in the end)