Wednesday 1 December 2010

The Hardest Part

Its cold and snowy here at the moment, last night I cheered myself up by looking at how long it is until our trip to Australia in February. 75 sleeps. I was amazed its that close and was thinking how quickly time will fly. Then, a thought crossed my mind. Joseph was in hospital for 76 long sleeps. How slowly that period of time went for me then.

I am not sure many people realise this, but, in the vast majority of hospitals in the UK, you cannot stay in hospital when your baby is in special care. There are no facilities for parents to stay. There is an anomaly, because in paediatric hospitals and untis parents are encouraged and even expected to reside with their child during their admission.

There are lots of difficult things about having  a premature baby. The fear of the unknown, watching your baby go through unspeakable medical procedures, not being able to hold your baby. But for me, the hardest part was not being with my baby at night, leaving in the evening and going home. It was made more poignant that our car park was also where parents parked who were taking their babies home. Day after day I saw excited parents with bouncy babies taking them in their car seats and going home. It was tough. When I caught the bus I deliberately got off at the main entrance so I could avoid that door during the day, when the vast amount of discharges take place.

I was "fortunate" to be ill enough to stay in hospital for the first 7 nights of Joseph's life. It was lovely to be near to him (albeit a floor away) and I could pad down during the night and see him. The visits at 2 or 3 in the morning were my favourite ones, the doctors would be there, but busy between special care, A & E and the children's ward, so sometimes there were only 2 staff on duty. I was left alone to just stare at my gorgeous little baby.

Once I got home, the wheels fell off. I am not sure how much of this was the medication I was on for high blood pressure, normal post pregnancy hormonal imbalance, and how much was immediate post traumatic reaction, but I lost my grip on reality, particularly at night. I woke up my first night at home asking for a nurse to help me get up so I could see my baby. I routinely got up looking for the elevator so that I could go to the unit.

Later on, one horrible night, I had a nightmare. I can deeply recall it. When Joseph was in hospital, I had a self-imposed Google ban. I thought no good could come out of looking up potential problems, if I didn't understand something I'd ask one of the staff, a doctor, ring my GP or ring Bliss.

But this one night, I had the most vivid dream. One of Joseph's doctors had some MRI scans up on a screen, Joseph had a break in the spine at T3/T4 (thoracic spine, the middle of the back) and it looked like a fluid filled tumour. It would mean Joseph would probably not be able to walk, and it accounted for some of his breathing problems. I stood with the doctor trying to digest what this meant. The doctor left the room, and I woke up.

I had tears all down my face, I was shaking, it felt so real. Then, in my muddled state, I thought, maybe it was real, maybe it had happened during the day and I just couldn't remember. I lay in bed, deeply frightened and confused, and had thoughts spinning around my head. So I rung the ward. Fortunately it was one of the senior midwives, who knew my husband's family well, had had pre eclampsia herself, and was very kind and understanding. She listened to me, reassured me that Joseph was fine, and hadn't had an MRI and there certainly were no issues with his spine.

Very kindly, in the morning, one of the doctors did an examination with me present so that I could see there were no problems. But they thanked me for flagging it up. Apparently this is a problem in some premature babies.

Now how did that dream come about? I hadn't read anything, or researched spinal problems. Why was it so detailed? It still sort of haunts me, how my subconcious works.

Before I fell pregnant I was considering doing a degree in nursing, and I went to a talk at the University of Manchester. The lecturer asked us what the most important day in hospital is, from a patient's point of view. I knew the answer, but sat quietly to see what people said. One person said "every day", another said "the day they get a diagnosis", and another said "the day they have their operation".

No the greatest and most important day in the life of a patient (or in this case the patient's mummy) is the day of discharge, the day they finally go home.


  1. Jaysus woman stop making me cry!

    Beautiful heartfelt post!