A bit of background - second attempt!

Right, second attempt. This time in a word doc so there’s (hopefully!!) no chance of it going awol before I can post.

So Millie. The title comes from a phrase you will hear regularly in our house when our 8 year old does one of her mad things and we say “oh, that is so Millie!” You’ve probably guessed the blog is mainly going to be about Millie, but I’m sure I will use it to talk about other things as well.
A bit of background first - I suspect this will be a shorter version of what I wrote last night simply because I can’t be bothered to write it al out in detail again. Despite losing it I found it quite cathartic to write because I have found it impossible to write in detail before. I have some photos of Millie from when she was born that I want to scrapbook but I can’t bring myself to do it yet.

I had a very easy pregnancy with Millie with no problems at all. The only downer on the whole thing was when I went for the 12 week scan and they did a nuchal fold test without telling us anything about it. We were given a 1 in 32 chance of her having Downs Syndrome but we chose to have no further tests as we didn’t mind if our child had any problems and didn’t want to take any unnecessary risks with our baby.

She was born after a very quick and easy hour labour in the early hours of 24th April 2000 and we decided to call her Millennium April, or Millie for short. The midwife came to visit that afternoon and commented on the fact Millie was quite yellow. I wasn’t too worried as my previous three babies had been jaundiced and it hadn’t been too serious with them. The MW said she would do a blood test to check her SBR (serum bilirubin) levels the following day but if I felt it needed doing sooner then I should call the maternity unit in the morning.

The following morning my instincts were telling me to call the unit but my rational side was telling me they would want reasons and I couldn’t give them any. She didn’t seem more yellow and she was waking for feeds. Eventually I gave in to the nagging in my head and rang the unit. The MW I spoke to said it was too late to have it done as the courier was collecting the samples in an hour to take to the lab at RUH in Bath. I accepted this, I had made the call, and I wasn’t that worried still.

About half an hour later we got a call back from the unit asking us to take Millie over there and they would have the sample couriered over especially. Off we traipsed and she had her bloods done and we went home to await the results. About 5pm we got another call asking us to take her back to have the test redone. They thought he sample had been contaminated on the way over as the levels were so high. I was advised to go home and pack a bag while we waited for the results of the new test. I was surprised and asked could we not wait until the morning to take her in. I didn’t notice the hint of panic in the MWs voice as she told me that no it couldn’t wait until tomorrow until afterwards.

At 9pm we got a call from RUH telling us to get Millie over there as quickly as possible and to take her straight to NICU (neonatal intensive care unit). So off we went on the 45 minute drive to the hospital. As soon as we got there we were ushered into a large room at the back of the unit. We later discovered this was where the most seriously ill babies went, then as they improved they moved through a series of small rooms towards the door. I was trying to take Millie’s clothes of while answering a series of questions and obviously taking too long so a nurse offered to help me. I looked away from Millie for about 5 seconds and when I looked back she had been stripped to her nappy and was in an incubator having drips and things inserted.

I was beginning to realise that things might actually be quite serious now but it wasn’t until a Dr came to see me a little later on and explained what was happening. Millie’s SBR levels were very high. At 150 they start treating with phototherapy, at 350 they do a blood exchange. Millie’s had gone up to almost 600.…. I was advised to prepare myself for the worst because it was unlikely she would survive such high levels. IF she survived then she would almost certainly be severely brain damaged. The absolute best outcome which was very unlikely was that she would be profoundly deaf. They had blood on its way from the blood bank and had several nurses and two paediatricians ready to do the exchange. Her levels continued to rise to 700. I was told to try and get some sleep on the post-natal ward and they would phone when they had finished.

Amazingly I did manage to get some sleep and when I woke up the next morning there was been no phone call. I tried not to panic telling myself that if it had all gone horribly wrong they would have called to tell me. I went down to see her and she was sleeping. She looked so huge in that incubator especially compared to the teeny tiny babies around her. How could she be so ill?
Over the next week she stayed in the big room as her SBR levels were monitored and she received triple phototherapy. I was allowed to feed her but only for 10 minutes at a time. No chance just to cuddle her, as soon as she had finished her feed a hovering nurse would grab her and put her back in her little plastic box.

Amazingly she had survived, but we still didn’t know what damage the jaundice had caused. As she improved she was moved through the series of rooms until we could finally take her home.
At about 6 weeks she had a hearing test which showed no damage to her hearing, and she showed no signs of that severe brain damage but of course it was still early days and it could show later on.

When Millie was about 6 months she started to display some of the odd behaviour that was to convince me that we hadn’t got away scott free. She suddenly stopped allowing us to cuddle her. I could hold her to feed her but that was it. As soon as the feed was over she wanted to be put down. If she was crying we couldn’t pick her up to comfort her. Over the next few years she continued to refuse to let us hold her. We couldn’t hold her hand. If she hurt herself we had to leave her to cry as she wouldn’t allow us to cuddle her. No one else could touch her either which was quite difficult. If she fell over at toddler group other mums would go to pick her up and I’d often have to shout across the room to the mum telling her not to touch her - it must have made me sound crazy but the resulting tantrum because someone had touched her wasn’t worth it.

After we moved to Lincolnshire she started at a local playschool. I explained to them that they mustn’t try to touch her when she started but they hadn’t believed me at first. After a week or so one of the staff told me that they could now see what I meant about not touching her. They’d thought I was over exaggerating until one day when she was crying they had tried to cuddle her and she had gone into meltdown.

There were other strange behaviours - almost every single night for about 18 months she would smear the contents of her nappy around her bedroom. Nice! And I had a glass display cabinet that she would rearrange to how she wanted it. If I put it back the way I wanted it by the time I walked past it again she would have moved everything again. If I left it she wouldn’t touch it, until I tried putting things back and they would be moved to her liking again.

When she started school she had her little rituals she would have to carry out before she could sit down for the register and she would do odd things like sitting for hours pouring glue from one container to another. There were lots of other things we noticed over the years but every time I asked the school if they thought there may be a problem they always said no they didn’t think so. If I spoke to a Dr they would always ask if school felt there was a problem and when I said no they said she was probably fine.

So for years we were convinced that there was something “wrong” and no one seemed to listen to our concerns. Until about 2 weeks ago…..