Sunday 8 July 2012

2 Months Down, 2 Weeks to Go

Hasn't this blog been busy the past 2 months? I've blogged every day near enough, I've been busy in my every day life too. I am currently working hard on my Health and Social Care Diploma, working part time as a support worker, looking after Joseph and blogging my heart out. June was exceptionally busy with 4 trips to London, amongst other things!

But did you know that every day I have struggled to keep my head out of the NICU. This time 3 years ago we were 7 and a bit weeks into our neonatal stay with Joseph. And now, I find myself reliving it every year. I try to strike a balance, between letting the feelings and the memories flow, and also keeping busy with our life in the here and now. It's not easy.

This part of Joseph's stay was really hard. Progress was very slow. Around this time we had a terrible weekend, that will stick in my memory forever. Joseph was still in the High Dependency Unit. On this particular weekend there were three babies in the Intensive Care Room, which wasn't normal, they tried to only have one, or one stable and one for assessment. News came through another baby was on its way. The unit was so busy that all us "long termers" just pitched in and helped each other, which was great.

One baby sadly passed away. The unit was so busy they didn't have time to clear the unit of other parents, and I will never forget hearing the mother when she was told that there was nothing more they could do. That will stay with me forever. Another baby was transferred out, and I never found out what happened to her. Another baby died before she could reach the unit. It was just heartbreaking, and I felt such a horrible mix of guilt and gratefulness.

I'd got to the point where I had just had enough. It was getting really hard. My heart was heavy, my head was in bits - looking back, I probably should have got help, but there was none to be found, no support group or family worker anywhere.  Joseph wasn't poorly anymore, I'd had 2 months of visiting hospital, catching 4 -8 buses a day, not getting enough sleep, not being able to nap as I was always on a bus or a hospital chair, doing my driving lessons, I was at breaking point. By this time I had friends on the unit which was great, but it was hard to know their stays would be 2-5 weeks, and for the most part they had extended family support. I have never felt so lonely in my life.

On the Monday one of my favourite registrars returned from holiday. He was a straight talker, I sat him down and said "right, what are the next steps to discharge I've had enough, I need to get my baby home". He told me straight - feeding, weight gain and a heart murmur. At that point my supply was so low, and understandably so, I discussed it with the nurses and we decided to supplement with formula.

I finally caved and introduced bottles. Whilst I regret giving up my dream of breast feeding, I could see the nurses so happy that I'd finally "seen reason" and given up this crazy dream of mine. And Joseph began to grow. Every weigh in he was much heavier than the weigh in before, he was thriving.

It wouldn't be long before those magic 4 words were uttered "discharge planning in place". 

1 comment:

  1. Oh kylie, what a difficult decision but obviously the right one to make. I too had to make this decision with luka, doth completely different reasons. For you, it meant your boy could leave hospital, for me it was keeping him out. You do what u have to do and you have been through so much. no wonder this time is so hard for you.