01 June 2011(From Dexter's Mum's blog)
19 days and counting
Continuing along with the emotional roller-coaster theme of things, Day 19 sees me feeling sad yet hopeful.
A friend asked me how I was doing today and it got me thinking about everything. I realised that above everything, I’m sad with what we have missed out on as part of being new parents. To some, they might seem like silly things, but to me they were important.
As grateful as I am for the fantastic nursing staff who have been caring for our son, I’m also jealous of them and of what they have done with him. They changed his first nappy; they cleaned him up for the first time; they saw his eyes open for the first time; they saw him before me; they got to hold him before me. They see him when he wakes up and feed him when he goes off to sleep. They get to comfort him in the middle of the night. It shouldn’t be like that.
I pictured us laughing as we changed that first shitty nappy, having been told absolute horror stories from my sister and her friends. I pictured feeding him when he wanted and as much as he wanted; as opposed to every hour, through a syringe, the amount dictated by the doctors and nurses. I pictured the three of us leaving the hospital together, not leaving him at the hospital on his own. Not once did I think I would have to ask permission to hold him, and that is probably the hardest thing of all.
My days now consist of expressing every few hours and sitting and waiting. I’m familiar with what alarms to be concerned about and what ones to ignore. I now know medical terms I don’t want to be familiar with! I know when handover occurs and when doctors are doing their rounds. I understand the boredom the nurses must feel when the babies are behaving themselves and the only thing they have to do is a milk check every hour. I see and understand the familiar look of numbness of other parents and I see and want the look of happiness as babies are upgraded to the ‘fattening up’ ward or ‘hatched’ out of their humidicribs.
Every day is different. There is a song from the early nineties, “opposites attract” and it has the line ‘two steps forward, two steps back’ – this is my life, and everyday this stupid song goes through my head!
Today for example, his milk was increased to 9mls an hour when I called at 6.30am. When I got there at 9.00am, it had been decreased again to 7mls due to a small vomit. This decision had me in tears and on the phone to my husband saying I wasn’t sure how much more of this I could cope with. However, throughout the day, he tolerated his milk and was back up to 8mls by the time I left. He hadn’t vomited and was doing well. We held hands and chatted and ended up having a good day.
And so now I realise I need to look at the good moments and hold on to them. I need to remember the things like; the arguments he had with his dad about trying to pull out his gastro tube, that he won; the fact that he hates having the CPAP machine on so much that he actually managed to push it so hard that he dislodged the nose prongs, finally getting his way with the nurses and rewarding himself with 30 minutes off the machine; and my favourite, the fact that he squirms around so much, but when I put a hand on him, he settles and then I feel a tiny foot on my arm as it seeks me out and rests and relaxes.
It’s a hard process and something that I would not wish on anyone. I may look like a freak sitting on the bus and bursting into tears over the slightest thing, or bursting into tears when someone says something nice to me, but we are getting there! I’m hopeful of him reaching his full feeds (10mls) soon, so that he can come off his drip. I’m hopeful that the CPAP will make his lungs stronger so that he can get off it. I’m hopeful of being able to transfer back to Wollongong as soon as possible so that we can be back with our families. And mostly, I’m hopeful that we will be able to take him home before his actual birth date. There will be a time that we can do everything that we missed out on, it will just be a little delayed.
And to end, here are some details to make you laugh. I did some rough measurements today. His legs are 18cm, my hands are only 17cm! His hands are 6cm, the same as my ears!