Thursday 2 December 2010

NICU Mantras

I have really started to embrace Twitter, its a great place to interact and meet people you never otherwise would have met. I have met this wonderful mummy via another via this lovely mum and Nicu nurse. I met Jenny whilst she was pregnant with triplets. She threatened preterm labour and managed to hang on until 28 weeks. Her three little babies are currently in NICU (neonatal intensive care unit) and doing very well, however they are subject to the usual NICU issues that all premature babies face, little setbacks, various health problems, and just the slow business of growing and learning lifeskills that full term babies take for granted - you know, life skills - like breathing, maintaining body temperature and the all important feeding.

Yesterday, on Twitter Jenny was feeling a little low, post c-section, babies in NICU, expressing (for three!) takes its toll. She mentioned that her mantra was "tomorrow will be better". It got me thinking, what were my mantras in NICU? What were those little snippets that helped me through those long days?

I am the Mummy - I repeated this over and over. It is very hard to feel like a mummy when your baby is kept in a plastic box, doesn't look like a baby and you are not doing normal mummy things. But you are the mummy, very much the mummy and no one, no matter how qualified, how experienced, can do the job you do. However dedicated the professional, they do not, and will not, love your baby. That's your job.

Now is not forever - It is very hard to keep a sense of perspective, especially when you know that your baby is likely to be in hospital until their due date, and that is 3 months away. I remember my sister blogging at the time "she is learning to be a mother to a baby who lives in a hospital". And feeling desperately sad. But it wasn't forever. And now, its just memory, story. It happened, it was real, it hurt, but its over.

The rule of three - One of the things I really struggled with was information, particularly about things that came down to opinion. Every nurse does things differently. And every nurse thinks her way is either the only way, or at the very least the best way. I was told to throw out bags of milk as I had frozen them after being in the fridge for 24 hours. At the time I didn't know how much he was taking so didn't want to freeze them straight away as fresh is better. One nurse said it was fine, the other said it was dangerous. I accepted the second nurse's opinion as gospel and chucked it. Several others subsequently said it was fine. So I then operated a rule of three, if three people said the same thing, I accepted it as truth.

I know my baby best - Although your baby might be in special care, with things happening you don't understand, you have known your baby since it was conceived, and you can still trust your instincts. If you are concerned, speak out. One of the doctors wanted to do a lumbar puncture on my son, because they believed he had an infection. At this time Joseph was on pretty much the full spectrum of prophylactic antibiotics. I made the doctor tell me what indicators Joseph had of infection, and he told me he was having seizures. Now by that time I was spending up to 7 hours a day with him, so I asked him for dates and times. Some of these "seizures" had happened whilst I was there. I was sure it was constipation. It looked to me, to use the local dialect, that Joseph was "thrutching". During these "seizures" he was awake, he was looking at me, and his tummy was tensing. As it turned out, he was constipated, in the next 48 hours he did several poos, and the "seizures" stopped. No need for the lumbar puncture.

You are not alone - When you are going through special care, you can feel desperately lonely. In our case our unit only had room for one long term NICU patient so no one else was going through what I was. However, I found support from unlikely sources. Cleaners, chaplains, one of the maternity doctors who used to lurk outside the unit for a cuddle and a quick catch up, even fellow bus catchers. I met one lady whose son had been in hospital for six months, and she went nearly every day to see him. We would swap notes, and give encouragement. She was in her 70's and her son was 40 and in long term psychiatric care. But I felt a strong affinity with this mummy, who was having very similar experiences to me, the feeling of social isolation, fear of the future, and disconnection from her son. And having to deal with things she didn't always understand.

Its all character building - Sometimes I wondered why this was happening to me. But then I asked myself "why not me", if it has to happen to somebody let it happen to someone who will roll with the punches, who will learn from it, who will come out the other side with a richer character, and an appreciation of the whole experience.

I would never, ever wish having a premature baby on anyone, its hard, its sad, and what the baby goes through in order to survive and thrive is tough. Most mummies cry when their babies have their injections. When Joseph had his injections, I was completely calm, grateful that was all it was.

However, having a premature baby can be exhilirating, watching them grow and develop, and learn, its amazing. So whilst I would not advise going out of one's way to have a premature baby, use the experience, if it is thrown at you, to grow as a person, and importantly as a mummy.


  1. Some good mantras!
    We used to celebrate everything good at the end of the day, even if that was simply that we had made it to the end of that day. But all the little things that seem huge at the time, opening their eyes, putting on minute amounts of weight, or drinking a teeny bit more.

  2. Absolutely love all your blogs and they bring back so much memories and feelings, etc!

    Oh that's so true, I remember with both all the little things were huge for us - going from 2mls to 4mls coming out of their plastic box and going into their fish bowl, moving rooms-getting closer to the exit (don't know how other neonatals are set out, but Aberdeen's you move down rooms towards the exit. I was able to take all my experiences first time round and it made me stronger when unfortunately we went through it all again in August, which helped as this time there was more issues.

    I remember both times getting really upset and feeling useless (1st time) and really irratated (2nd time) with one person saying one thing and then the next day being told something completely different or with my youngest being told she had a open heart duct and then somebody else a few days later saying she has a heart murmur! We now know it's the same thing but why can't the same terms be used???

  3. Don't get me started on the heart murmur! We had that too. I was so confused for ages.

    And then it just went. No one explained that the murmur was caused by the PDA and the PDA had closed of its own accord, it was only when I got the discharge notes that I understood what had happened.

    In our NICU you go further to the back as you progress! And then finally the rooming bed are near the exit!

  4. Hello, really interested to find your blog, my son was born 29wks weighing around 1 kilo. He's 3 now and fine but it was a life changing experience. I can see I am going to have to come back here and do some more reading when I have a bit more time! Have added you to my RSS reader.