Thursday 20 October 2011

Above the Beeps - Return to NICU

I have discovered, on this journey with Joseph, my premature baby, that there are three kinds of parents of premature babies. Firstly there are those who have their premature baby, get through NICU, go home and get over it. They disappear, they don't go to support groups or post on websites, they carry on. Then there are those who want to be active, but have children with severe problems and do not have the time and energy, and that's fair enough. And then there are those who get involved, who seek to support others and who campaign (and blog!). Since having Joseph and getting better I have been involved in a number of projects for Bliss and for Tommy's. I feel an obligation to share what I've learned, to support others, and to campaign so that more babies like Joseph have the fabulous start he had, with the very best in neonatal care.

So tomorrow I am attending a meeting with Bliss and the Manchester Neonatal Network discussing a number of issues. The meeting, no doubt, will be interesting, and there are a number of things I am eager to see covered, including how the Network are planning to manage the closures of hospitals like Fairfield. I am also eager to see their response to the Bliss research about the reduction in nursing jobs that I blogged about on Monday.

Part of this meeting involves a tour of the unit. This is daunting for me for a number of reasons. This is the unit Joseph should have gone to. When we arrived at hospital and my condition was diagnosed, the consultant felt that this hospital in the centre of Manchester would be more appropriate, but I was too poorly to be moved, and then I was warned that Joseph would be moved as soon as he was born, and then I would be moved a few days later. However, Joseph was well enough to stay at our local unit, and remained well enough. And, fortunately, our unit had enough space at the time to keep us.

I have been talking to my friend Jane who runs this inspirational e-magazine, A String of Pearls.  About my fear. I am afraid I will walk into that unit and fall apart. I won't have Joseph with me, I will be with professional people. I am quite possibly the only person in that group who has sat on the side of an incubator watching and waiting. Listening to the beeps.

Jane sent me a number of inspirational messages, she is just that sort of person!

A great opportunity to 'see' how far you & JT (joke teller, its a long story!) have come. An opportunity to allow gratitude to heal much, to free you for action. Choose not to be . This can empower you as you move forward rather than let the experience hold you in the past.You need to be an example  for those you now seek to help. This then can be seen as a pivotal moment. Do some head work to change your paradigm.
 And I feel I have sought to do this, to see what happened to us as an opportunity, a postive thing. I look on our NICU journey with an element of fondness now. As my husband said to me last night "it was a life changing experience". I certainly have learned to take nothing for granted.

But, on the other hand, one's reaction to experiences is primal. Smells, sounds, sights can trigger reactions that we cannot always control, and the one that gets me (and mothers of premature babies all over the world) is the beeping. Our babies didn't cry when distressed, they beeped. There is not a premmie mother around who could not tell you about bradys (bradycardia where the heart beat slows down) and desats (oxygen desaturation often accompanied by a desat - the beep is different when they occur together).

I know that the babies I will meet tomorrow will beep. I know that there will be mums and dads at various stages of their journey. I know I must be on an even keel, not too happy, certainly not too sad. I am there to listen and to learn, and to ensure that the voices of parents and babies are heard, above the beeps.


The meeting was a very positive one, and it was great to learn more about how the Neonatal Network operates, and the research and thought behind it. I was shown the unit, and it was beautiful, lovely large bedspaces, and I saw some sweet, sleeping babies, and some families. And, I didn't flinch or cry, the beeping didn't worry me at all, so I must have progressed a great deal in the last 12 months or so!

1 comment:

  1. Well done, Kylie. I mean that from the bottom of my heart. :-)

    I'm really glad that the experience was positive for you today. I'm also really glad that you're the 'third kind' of mum. You have always been such an inspiration to me. Even though Joseph's not really that much older than Molly, because you were further down the journey, you seemed to always have so much more knowledge than me. I feel you have always been a great support and more importantly a great example to me, especially in the early days. Thank you.

    K x