It was the best of times, it was the worst of times…

Look at us. A mother and son cuddling, such bliss. But of course this pic tells little of the realities of having a newborn. I don’t want this to be a negative rant, but I do want to share what we are going through right now… I mean, this blog may be filled with positive Audrey stories, but it’s really about our life and how having a child with DS doesn’t make our life that different to other family’s. So although I share a lot of positivity, it’s not because I’m sugar coating, she’s a joy.

Where we are now: Rex is 1 month old. He only sleeps in the sling (preferably whilst someone is pacing) or on us with some additional pats and jiggles as required. He likes to feed every 2-3 hours and he doesn’t like to lie still on his own for longer than about 5 minutes. He is currently a very difficult newborn and I am soldiering on with breastfeeding despite the early part being incredibly hard. In fact, it’s still hard. But they say it takes 6 weeks to establish breasfeeding, so in a couple of weeks we will hopefully be in a better place. I live in hope.

I recognise that each stage with a baby is a tiny speck of time in context of our lives – one day this kid will be festering in his teenage bedroom and I’ll be dragging him out of bed. But right now, I am dealing with the hardest thing I’ve ever had to do… and I’ve dealt with a surprise Down’s Syndrome diagnosis and my father dying… But this, this is another level – it’s intense 24 hour work. 

Of course Ted is a massive help – he is now in charge of Audrey am and pm before and after his full working day and all day on days off. Because very often, it’s only boob that will work for Rex. And that in itself is so hard. I’m striving to make breasfeeding work; to give him the best start in life etc,, increase our bonding, secure his immunity to various things… That’s all great, but oh the commitment to being there for him every 2-3 hours, when it can take an hour to feed and then settle him! And when he can’t be put down – where is the respite for me? I use that word – because with a “disabled” child you are given a lot of leaflets about support etc and respite care comes up a lot. Hey, maybe in the future Audrey will be a handful and we’ll want that option, but so far, no need. A newborn however – can they send over a respite carer for us now?? 

I guess I also feel robbed. We had a rough start with Audrey, I thought our “typical” baby experience would involve more blissful bonding and time to appreciate the life we created, no grieving, no confusion or worries, lots of gazing at him lovingly. But Rex isn’t letting us enjoy him. He is too needy for gazing. I’m genuinely terrified about how we “crack” the sleeping issue. How will he learn to sleep lying alone and still, when he currently sleeps upright and moving? Even on me in bed I spend much of the time patting him when he stirs (so often my sleep time isn’t real sleep time, it’s like being on watch for enemy attacks and dosing in between).

As I type this post I am pacing the house with Rex in the sling. Audrey is watching kids’ TV with her mouth open. If I sit down to rest, Rex starts grizzling and I have to get up and pace again. I’m exhausted, emotional and can only see a long stretch of this ahead of me…  I’m partly documenting this so that in a year or so (whenever the crazy thought arises) I can make a sensible decision about getting broody again; i.e; two is enough! Don’t let me do this again, please!!

It’s just a phase (we hope!)

So here we are. I’m a mother of 2, we’re a family of 4, Audrey is a big sister.
Such a big leap from being a tired woman with a bump and a non-toddling toddler – to being a tired woman with a newborn and non-toddling toddler! Thank goodness for paternity leave – my beloved husband has never been so needed!

So far, I feel like this time around is much harder than my experience with Audrey. I realise that it’s totally crazy sounding to say a c-section, unexpected Down’s Syndrome diagnosis and three weeks in a special care baby unit is easier than a vaginal birth and a healthy baby being at home within 48 hours. I guess it’s true what they say about childbirth fading from memory.

The main difference is that Audrey was a sleeper – I had to set alarms to feed her. Rex doesn’t have that problem. He is getting better (we’ve had a couple of 3 hour breaks between feeds – a miracle!), but unfortunately his keen feeding nature in the early days means I’m currently in cracked nipple hell! Again, something Audrey didn’t put me through…

But don’t get me wrong, Rex is delicious. I still appreciate his peach fuzz head and big baby blue eyes. He’s another perfect tiny human we made, but wow, his sister didn’t prepare us for a tricky baby! In fact, she tricked us into thinking babies were easy!

Audrey has been an absolute angel. She can say and sign Rex, she regularly says “Hi Rex!” And asks “You ok?” If he is crying (and to me too if I’m crying – like I said, I’m a hormonal wreck at the moment). She is so loving, gentle and sympathetic; she makes me cry just by being her, I’m bursting with pride and I miss her! I’m so often feeding and tending to Rex, Audrey time has diminished. But it’s a great chance for Daddy to get some Audrey time of course.

We are in the middle of a difficult stage – only 10 days in, it’s quite a shock to have a newborn in the mix. Will keep you posted, but I know things get better and I have to keep reminding myself “it’s just a phase…”


Welcome baby Rex!

Eek, I don’t have time to write a blog post (although you could say I have more time, given my awake time hours!!).

But I have to announce the birth of Audrey’s baby brother, Rex Graeme. Born 26th February 2016, weighing 7lb 13oz.

Please excuse the still in theatre shots!

It was a long labour, but we avoided a c-section, which is the main thing.

Currently exhausted, he’s 4 days old and doesn’t like sleeping as much as his sister did at this age. Audrey has been an absolute star, she keeps asking me “You ok?”. I am an emotional, hormonal wreck and I miss my Audrey time! Daddy has been wonderful as always. 

We are a family of 4 and are working hard to get through these tough early days to the fun stuff!